Angel Elli

One year

2009-08-19T10:25:00.000-07:00

Elli,

It has been one whole year since we were at the hospital awaiting your arrival. I remember how scared I was up to and while you were being delivered. I didnt know how one little hand grasping my finger and recognizing my voice would affect me so much.
It has been a long year in one sense but really fast in others. Cassi and I miss you so much and will never forget the time we shared, short as it was. I have found on several occasions that this computer is not very comforting. It is not nearly as soft as you were when you were finally put into my arms.
just leaving you a note to tell you happy birthday little one.

Loving and missing you ,
Breathe easy

Mommy and daddy

Long Overdue

2008-12-17T14:54:00.001-08:00

Hello Everyone!

I know it has been forever since I posted, not really sure why, guess didn't know what to say since this blog is supposed to be about Elli, not necessarily us. It seems as if though people tend to still care about the boringness of the Reed life. Not up to much, still finishing up on the house, which I am thinking might be a never ending project. We did get a new dining room table this weekend, quite the project getting it all put together, not to mention the 10 chairs that we got. We are hosting Brian's family Christmas at our house this year. It just seems so hard to get into the Christmas spirit for some reason. As for decorating, I have done minimal. The tree is semi up, Brian put it together last night while I was at work, but the branches are not fluffed, no lights, or ornaments. I was hoping that we could just for-go it this year, but Brian insisted since our nephews will be here for Christmas this weekend. I thought it would be okay to just have a present "corner" instead of having them under the tree. Speaking of presents, I am pretty much done shopping, which I am so glad about. Our Christmas's are this weekend for the most part, so I did my shopping last weekend. All presents are wrapped and ready to go, now if I was just that ready.

I had a little bit of a melt down today, poor lady didn't even see it coming. I have been going rounds with St. Luke's billing department. My portion of my labor and delivery bill is 500 dollars, which I paid the day after I got the bill. I didn't want to drag all this drama out over the holiday season. Needless to say, 6 phone calls later, and 4 late payment notices, I finally snapped. I was bawling and yelling at this billing lady on the phone. The deal is that I payed it a month and a half ago, and the check cleared nearly 3 weeks ago, yet they say they still haven't received payment. If one more call about it i will literally freak out. This is ridiculous, that was the reason that I paid it so quickly, which evidently means nothing.

I am becoming quite the night owl. I started working nights a few weeks ago. Man that first night really kills me because I wake up normal time and am up all day and then go to work all night. It was what I did when i worked in Maryville too, but it seems to be getting to me more up here. Really I do fine until I am on my way home, I start fading fast when I hit Treynor (about my half way point). I really like the ICU, and the responsibility that goes with it. I feel like I learn so much everyday. The doctors respect you so much and ask you what they need to do. Basically I called the doctor last night with this woman's issues and he asked me what I thought we needed to do...um start Dopamine and get a CT of the chest (I am thinking the lady threw a pulmonary embolism) and he said that sounded about right and that I could titrate the Dopamine to what I thought was appropriate. How different nights are, the docs really rely on the nurses to take the initiative to do what the patient needs. Either way it is going well.

Brian is still enjoying "farming" which entails a lot. This week he started hauling grain to the elevator. Our weeks seem to flay by, especially with me working nights, I am leaving when he is coming home and he is gone before I get home in the morning. He hasn't done much hunting, but his deer season is coming up. Supposedly there is a 200+ inch deer running around on our property. We get so many calls from people asking if they can hunt. On that note, no one will be hunting around our house considering we have a ton of baby calves running around. Oh yeah I forgot to mention, we live in a gated community of 1. My dad put gates up at the end of my driveway so he wouldn't have to fence both sides of the driveway considering that would be an extra mile of fence. In my opinion, it would have been worth it, I have to open and shut the gates every time I go anywhere. Oh and there is a gate up by the house too, so that is 2 gates that have to be opened and closed. He said that he is going to get me an automatic gate that is basically like a garage door opener, but that is yet to happen. As if you couldn't guess, I hate opening gates, and the calves are supposed to be here all winter.

My camera is officially out of commission. For some reason it just stopped working after Elli passed away, I can no longer get it to charge, so I am afraid after 5 years I am going to have to get a new camera. I really need to get a new one, so I can upload pictures of our house. It is so great, very grown up, no beer cans or booze bottles for decorations like in college. I have been experimenting with vinyl wall lettering. Brian got me a Cricut Expression, which if you don't know what it is, here is a link. It is pretty much the most amazing die cut machine for scrap booking ever made. Well I can also make vinyl wall art, even better then UpperCase Living if I do say so myself. I have been making a lot of stuff, not just for me, but friends and family too. Yesterday I made a sign for my friend Darci that would have cost over $50 from UL, and it basically cost me $.75 in materials, and it is so much more custom. I am a little bit obsessed with it right now. Hopefully my walls will not be covered with it, I need to remember moderation. Right now I have all Christmas and seasonal things on the wall. I am trying to think about a good saying for my Dining room wall. I am thinking of this one....

Our family is a Circle of Strength and Love,

with every birth and Union the circle grows,

with every death and crisis faced the circle grows stronger.

Or this one....

Home is where you can be silent and still be heard

Where you can ask and find out who you are

Where people laugh with you, about yourself.

Where sorrow is divided, and joys multiplied

Where we share in love and grow.

I just don't know yet, either one will be quite an undertaking for me. Hopefully when I get a camera I can show everyone my handy work, I am so excited. I have decided I must be bored, because I am thinking about painting one of my walls in the living room. I want to paint the wall with the huge window Red. I think I am going to have a super hard time finding the red I want for the curtains, so if I paint the wall red, I can get khaki curtains to hang up. We'll see with the boy says, he is not a huge fan of bold colors, but he seems to like his "hunting room" which I painted a barn red. It is so cute, and once again as soon as I get a camera I will post pics. Come to think of it, maybe I should have asked for one for Christmas, oh well, my birthday is in January, it has always been nice anything I didn't get that I wanted for Christmas, I would just ask for it for my birthday.

Sorry this post is so long, I guess I had a lot more to say than I thought. I almost forgot, we got Elli's headstone put in the other day. It is beautiful, but pretty annoying. I mean it seem so dumb for the lack of a better word to be visiting our precious Elli at a grave instead of cuddling up with her on a cold winter morning. The headstone turned out beautifully. Since the cemetery does not allow any headstones to stick above ground (I guess for mowing issues) we had to get a flat one. It is a custom size, bigger than the normal "grasser" as the monument company calls it. We didn't know if they were going to be able to get it in before the ground froze or not, but I guess they did. Brian went last night and cleaned the snow off it, he said that it looked really nice in the moonlight, the black granite against the fresh snow. I didn't stop since i was on my way to work, but I am sure it was a tear jerker. Well I see it is getting to be that time...work time. I worked last night and work tonite and tomorrow.

Brian and I hope that everyone has a safe and happy holiday season, give all your children an extra hug on Christmas morning, take too many pictures, buy too many presents, and take time to really enjoy this time of year spending it with friends and family.

I just remember this: When someone you love is in heaven, a little piece of heaven is with you every day. I miss Elli so much, and never imagined my life without her. These times faced can only make Brian and I stronger. I think I finally have a comeback for the old saying "God does not give you more than you can handle"nope he doesn't "give"you anything. Stuff happens and he helps you handle what you are given.

Thank you to everyone who continues to think of us and posts even though we don't. It is so awesome to think there are that many people who still care so much. We are so grateful to have this amazing support system. We would no doubt crumble to pieces without each other and all of you, Thank You again and have a blessed holiday season.

Love Brian, Cassi and Angel Elli

Too Much Too Soon?

2008-11-06T18:31:00.000-08:00

Wow, I had now idea how different working in the ICU would be from working the small Med/Surg unit in Maryville. Today was a prime example. The patient that coded on Tuesday, is still in the ICU on the vent, well today the Neurologist came in to test brain function. Needless to say, there was only a very small of deep brain stem function left. This is basically the part of the brain the controls the primitive controls of the body including blood pressure, heart rate, and temperature. All of these things are even fluctuating a lot too. I was in the room when the Neurologist told the family his findings. He started talking about "brain death" and "decisions" that needed to be made and "withdrawing care" Once he started talking I was like..Holy Shit, and started feeling like I couldn't breathe and someone put about 7 winter coats on me. I felt that feeling in the pit of my stomach, and knew I was about ready to burst. I had no idea the amount of tears the my eye-sockets could hold without the tears trickling down my cheek, but they must have held about a gallon, because I was able to hold it together until I got out of the room. Then it started, the gut wrenching crying. You know the type, the tears literally come from the bottom of your stomach, and you start learching because you are crying so hard that you cant catch your breath, and to add insult to injury, the nurse I was orientating with looked strait at me and said "Oh my God, are you okay" Well that comment didn't help at all, I just shook my head, and pointed to the bathroom. And always being Classy Cassi, I sat on the toilet and bawled for about 5 minutes, and then finally pulled myself together, washed my face, and went back onto the unit. I think even the people in coma's could tell that I had just bawled my head off.

I really thought that I would be able to control all my emotions and feelings, but all the talk about withdrawing cares, I was right back in the NICU at Children's. I could literally hear the doctors telling us about Elli, and her "quality of life" and our "decision". I felt so bad for that family, but moreover, I felt bad for Brian and I. It all just hit me at once, and out of the blue. I guess that it might just be too much too soon. I already decided I don't want to be in the room if the family does make a decision tomorrow when I work. They will extubate him and let him slip away, and that thought of Elli has already crossed my mind. I thought about it all the way home from work. I remember the look on her tiny face as she looked up at me and took her last breaths lying in my arms, and it is like I am right back there in that rocking chair with Brian's arm around my back and his hand on Elli's head telling her it was okay to go. I said that I never wanted to see that sight again, gasping for breaths, and to see my patient doing it even while he is on the ventilator just made it all come flooding back. I have seen people pass away in the past, but it was nothing like seeing Elli quickly slip away from me, to never have the life that she was supposed to have as Brian and I's beautiful daughter. So needless to say, I will hopefully be taking a different patient tomorrow. The "coolness" of ICU has so worn off, and now it is hitting a little too close to home. Oh and about the nurse I am orientation with, she is so nice, and knows about Elli, we were just really busy trying to discharge another patient and didn't realize that I had started to well up in the room and was shocked to see me in that state. She started crying and so did the other nurse working with us. So there I go again, making people cry, I should really work on that.

Wow Elli- This has been such a hard day, so many emotions and feeling creeping up on me that I thought I had control of, but in reality, I have control of nothing. I miss you so much, it's crazy sometimes how much I think of you. I picture you in my arms and those last hours we spent together. I cant believe we were able to make the decision to "let you go" and I forever hope it was what was best for you Elli. Just know that Daddy and I were only trying to do what we thought was the right thing to do. I never thought that I would have to make a decision that I would have to think about every day. People ask all the time, I don't know how you could do that or I could have never have made that decision. The truth is Elli, that we really had no choice, it was already made for us. We just had to follow through, and we deal with it because we have to. Of course we don't want to deal with it, but we have no choice sweetie. We no longer get to have you in our arms, but Daddy and I have you forever in our hearts, I just wish that that was as good a substitute to rocking you to sleep each night, but in reality it's not. I hate that this is how this whole situation had to turn out, but it is and there is nothing that we could have done to prevent it or change it, it is just what it was, You, Me and Daddy for 20 amazing days. We miss you daily and think of you constantly Elli. We love you forever and are so thankful for the days you were here and are so glad that you are no longer struggling and in pain. Good night sweetie, be with me tomorrow and the days following while I am at work to give me strength to be there for not only my patients but their families. All our love. Breathe Easy-

Reed Family Update

2008-11-03T19:51:00.000-08:00

Wow I guess it has been a while since I updated anything. So many people have been asking how work is going, and it is going so well. I love it, but think I am going to dread making the switch over to nights, for right now I am on orientation on days. Three days a week goes by so fast and I love having 4 days to spend with Brian.

As if I had not already announced, I am in the Intensive Care Unit. It is challenging, but I really enjoy having to learn new things every day. I cant believe how much I didn't learn in nursing school. The good news is that it only took me a couple of days to get back into the routine of working 12 hour shifts and doing nursing duties. I had to start my first IV in over 3 months yesterday, and of course got it on the first try, must still have the touch.

The hospital that I am working at is much bigger than where I came from, but it isn't huge. Basically we will see everything in the ICU except open heart surgeries and transplants. Other than that pretty much everything else is fair game. They do a lot of heart caths, so we see several patients like that who will have to be transfered for bypass surgery to our sister hospital Methodist in Omaha, NE.

Today started out pretty slow, but there was a code in the ER and at least one of the ICU nurses has to respond to the code, so I went down to help out. What an adrenaline rush, for lack of a better word, it was fun. (for me, not the patient).

I thought that being around all the specialized equipment and the monitors would bring back memories of when we were at Children's Mercy, but it hasn't really until today when they were setting up the ventilator. It was pretty hard hearing the ventilator, not the alarms, but the actual sound of the air going though the tube. I guess the reason is that because when we finally got to hold Elli, they switched her over to the conventional vent, and I remember everything about those few hours, and the sound of the vent today sent me right back there. Luckily it wasn't my patient, but I am going to have to get used to it, considering it is coming on flu season and pneumonia time, where we will have several patients on the vent.

Brian has been so busy with harvest. He has been working pretty much non-stop trying to get corn out right now. They finished up at my house today, so they have moved on to yet another field. The corn seems to be yielding pretty good considering some of it got a lot of hail damage. I have been keeping Brian company on my day's off by riding in the truck and tractor with him. We have been seeing a lot of deer around and my dad says that he has seen a "huge" buck on every field, although Brian has yet to see any of them. Hopefully he will be able to find one and try out his new muzzle loader he got when we moved up here. He has been so busy he hasn't even had time to shoot it.

Trigger is still grounded, I want to let him and Molly out, but I am too afraid he will run off again, so they have to stay kenneled up when we are gone, which on the days I work is ALL day. Wish that little turd would just stay around the house. Gabby our cat is doing well also, she is so vocal and will sit at the living room door and meow constantly. She still thinks she is supposed to be an inside cat, considering we kicked her booty out when I found out I was pregnant last December.

Hello Elli my sweet. First off I just want to let you know how much Daddy and I miss you baby girl, but we are so glad that you will never have to suffer through any more surgeries, or spend a life time struggling to breathe. As hard as it was to let you go, it would be so much harder knowing that you would have to live a life of pain and suffering, so knowing that you are pain free and able to enjoy being a baby in heaven brings comfort to Daddy and I. I thought of you so much this weekend. I wish that I could have put you in a car seat and we could have taken Daddy lunch and went for rides in the tractor. I can just imagine you sitting on Daddy's lap learning how to honk the horn and pretending to drive and it puts a smile on my face just thinking how cute the two of you would have been. I really like my new job sweetie, even though it is hard to see sick patients, I know that I will be able to help most of them get better, and those that don't, I will be there for them during their entire stay on earth, just like the amazing nurses at Children's mercy were there for you and us during those last days. You know all that milk that mommy pumped for you Elli, some other sick babies are going to get to use it since you weren't able to. I got word today that I passed my blood tests and that I will officially be donating my milk to a bank in Ohio. I am so glad that all that work will help some babies, and not be wasted. I got some pictures hung up this last week, and put two pictures of you in your room. They look so good, chocolate brown frames on the light pink wall. I leave the door open so I can catch a glimpse of you when I walk by on the way to put in yet another load of laundry. Well Elli, I thought on Friday that you were finally going to get your headstone, I was on my way to have lunch with a friend from high school and followed a CLA Monument truck from Henderson to Carson, but it didn't turn to head to Treynor, just kept on going north of Oakland, so I will assume that they were not going to deliver it that day. I keep my fingers crossed that they will be able to place it before the freeze, because if they don't, we will have to wait until the spring. I think about you all day Elli, and especially when I use the hand sanitizer at work. I know that sounds weird sweetie, but we use the same kind that they used at CMH, and after you rub it in, it kind of smells like baby powder. I hope the other nurses don't catch me smelling my hands on occasion just to get a whiff of Elli Smell. I have told a couple of nurses about you Miss Elli, but not everyone yet, but I will in time. I miss you so much Elli, and wish things would have been so different, but enjoyed every minute of those 20 days you were with me. I miss you always. Breathe Easy Elli. Love Mommy and Daddy

Woo Hoo!!

2008-10-26T20:27:00.000-07:00

Cassi and I got back tonight at about 9:45 she was riding in the truck and the tractor with me today and we were petting Molly our black lab and all the sudden I had a big yellow dog squeeze up between me and Cassi. Trigger is back!!!... and officially grounded. There will be no more galavanting around the neighborhood. Either way I got his and Molly's new collars with the current address and phone number so at least if it happens again we will have comfort knowing that someone could get ahold of us. So that close call has been averted. Thank you for your prayers and good thoughts of getting him back.

Also thanks to Jason Newman for spearheading the raffle in Elli's honor, and also all those who helped with selling the tickets and to all those who bought the tickets. It has all been overwhelming the support Cassi and I have recieved through this trying time.

My Country Song

2008-10-24T12:51:00.000-07:00

TRIGGER IS MISSING

FYI he is wearing an apron from when I used to be a waitress

As of a about noon on Wednesday, our Trigger has been missing. I am royally pissed about this. He is such an awesome dog. He practically went into depression when we were in Kansas City for 3 weeks with Elli. When we finally got home, he followed us around like a "lost puppy" and seemed to realize that something was wrong and missing. He helped us through the last 6 weeks so much, and now he is gone. Brian is pretty sceptical and thinks someone may have picked him up on the highway. God I hope not. He is notorious for gallivanting around the neighborhood, but is always back in an hour or so. We have spent countless hours and gallons of gas driving around looking for him, calling his name, whistling, and honking the horn, but still no Trigger.

My mom is going to help me put flayers up around our small towns to see if anyone has seen him. We did see that another yellow lab went missing last week also, god forbid someone is picking up these dogs. Seriousley, we live out in the middle of nowhere, why should we ever have to lock up our dogs. My dad owns the entire section, and pretty much everything to the east and west of the section too, so it's not like he would be invading on someone else's property.

I feel like my life is a bad country song, I lost by dog, I lost my baby, the sun wont shine, I got no money, my house wont sell...you get the picture.

So now not only do I have to spend my days missing Elli, but now Trigger...jeez cant a girl get a break. Guess not... Well I officially start working in the ICU on Saturday, so I will let everyone know how it goes. I am so excited to be productive and get out of the house. Today is my first day off this week and I seem to be going crazy already. It has been a crappy week with the weather, and Trigger gone missing. Hopefully the sun will shine again and Trigger will come jogging up the drive way.

I am actually getting some pictures and junk hung on the walls, so that makes it feel a little more like home. Still haven't got our house in Missouri sold yet, a couple people have called on it but nothing solid yet. It would be so nice to get it sold before the winter, but who knows.

As if you don't all have enough to worry and pray about, if you want to add another person to your list, my best friend Darci's great Grandpa is in the hospital with a broken hip and he is not doing too well. I hope that he can pull through this and be out of the woods before Darci goes on her honeymoon the first week of November. All you St. Francis nurses reading this...take good care of him, as I know you all will. I miss you guys, and hope to come for a visit and a little "Girls Night" action again soon. Thanks for all the continued support, letters, texts, comments, and phone calls, you guys are my rock of support. Well I had better get back to the laundry. I know I am cool, and you are all jealous of my fabulous life of doing laundry and Swivel Sweeping my floors. By the way if you don't have a swivel sweep, get one they are the most amazing invention next to the Shark Steam Mop...yep officially a dork. Who thinks cleaning products are cool...probably no one but me....oh well.

Shoot...Miss TMI

2008-10-21T18:48:00.000-07:00

It's about time...finally updating the blog and getting to desperately needed chores. This weekend I finally made the time to clean up our yard...we were looking pretty trashy with so much junk sitting outside our front door from moving. Stuff we didn't know what to do with we just left out in front of the house in this old "flower" bed. I quote the word flower because really it was a trash bed with two nasty bushes. I dug out the bushes and put in several items and plants that we received at Elli's visitation and funeral. Here's my handy work!

I love this little statue of a baby sleeping in Angel Wings. We received it in loving memory from our softball team that we played with in Maryville. We played co-ed softball for 3 years, so much fun, one thing we will defiantly miss living up in Iowa. Thanks Bridget, Stuart & Tiffany, Mooney, Laura, Becky P, Becky C, Jeremiah, Shelia, Julie C, Marge. & Jill.
We got this praying Angel from my parents, we picked it out because we thought it looked so innocent just like Elliott was.

This is jumping around a bit, but that is how the pictures uploaded. This is several decorations at Miss Elliott's grave. The pumpkin of course is from mommy and daddy. The sorghum on the pole is from Grandma Teri and Grandpa Aaron. You can't see it very well but there is a purple Angel Wind chime hanging from the Shepard's hook from Brian's cousins Craig, Andrea, Ryder and Cheyenne. The tiny white pumpkin ( used to be painted purple but washed off) is from Shana, a girl that goes to my sister's before and afterschool program. The rest of the decorations are from Elli's Aunt Staci. It was so incredibly bittersweet decorating Elli's grave for Halloween. It actually made me pissy the rest of the day. It seemed for lack of a better word, Dumb to decorate a grave when I SHOULD be decorating a room or picking out a Halloween costume for Elli. I think it would have been funny to have Elli be a monster for Halloween instead of something super girly or pink, while she would be cute as a butterfly or princess, I think a little monster would be even cuter, so in my mind she is the cutest scary monster ever!

Here is the front "Elli Bed" I love the bark, it was donated by my mom since I was too much of a cheap skate to buy it myself, but it looks AWESOME! Even Brian was proud of my handy work. All of the plants are mums. Two were from our friends Brian and Diana Schmitz and Eric and Beth Hornbuckle. The other was from a family friends Curt and Sharron Husz.

We also received these two markers from my parents and they were set up at Elli's Visitation. This one says:

If Tears Could Build A Stairway

And Memories A Lane

I'd Walk right Up to Heaven

And Bring You Home Again

Our Hearts Still Ache with Sadness

And secret tears still flow

What it meant to lose you

No one can ever know

The little rock with Elli's name and an Angel picture on it is also from our softball team, Thanks guys! Oh and yes, those pumpkins are real. I am a super dork and spray paint them clear so they don't rot as fast once it starts frosting in the mornings. Brian says they look kind of fake but I think it makes them look cleaner...who knows.

This little plague is what the Angel is looking down at. We received it from friends of mine that I worked with at St. Francis Hospital...Thank you so much Andrea, Melissa, and Ambrose...We love it and it is such a true quote.

And now for what the title means....I made three people cry today. Let me back up for a second. I have been doing more orientation at my new job and there are three of us doing it. The other two are girls about my age, one is going to be a CNA and the other a Unit Secretary. Anyways, we had to tell a little bit about ourselves, and when it was my turn, I didn't really mention the last 3 months other than I had just moved. The questions got progressively more personal and then the dreaded question...."Do you guys have any kids" (both of the other girls each have children but are not married, so they assumed me being married at least had one)

I knew this question was going to come up sooner or later at work, and I am sure that they were thinking that I was an idiot because I didn't answer right away, I mean it's not like it is a trick question or something that I would need to ponder but I just stared back at them for a moment. Then all the sudden I gave a fairly detailed explanation of the last 7 months of my life. Well...20 minutes later and 4 crying women, I had told Elli's story to 3 complete strangers. A simple yes but she is in heaven would have sufficed, but for some reason I felt compelled to tell them almost everything. We spent another 15 minutes talking about Elli and CDH (the nurse doing the orientation had never even heard of it and she has been a nurse for 20 years!...I hate that). I am sure that those girls are thinking OMG, TMI (oh my gosh, too much information)

Brian has been so busy with harvest, basically working constantly trying to get the crops out. So far we are done with beans and working on corn. He actually got home fairly early today because it rained today. It was nice to get to see him before I was crawling into bed. He looks so cute in the tractor, I will post a picture later. Oh my camera is dead, officially. I cannot get it to charge up, I don't know if it needs a new battery or what, but it hasn't worked since we were at Children's Mercy.

So much going on and time is flying by. I don't get to start actually taking care of patients until next weeks some time, so I will keep everyone updated on how that goes. I know it has been a while since I updated, but just couldn't seem to make myself sit down and type so sorry this is so lenghty, guess I need to get some stuff out. Still checking up on all my CDH babies though, so far so good for all them. Also, I had a great lunch and afternoon with Liviana, her mom and brother and sister last week. She is so cute, you would never be able tell the she battled CDH. It was so nice to see a healthy baby survive this terrible thing.

~Hey Sweet Elli~ Can you believe that you have been away from mommy for 6 weeks. It feels like an eternity since I got to smell your sweet baby smell or feel you angel soft baby hairs, but I got to do both of these things the other day. Some of your amazing nurses sent us everything that we left behind in Kansas City. In the box was several items, a plaster replica of your foot and hand, the clothes they put on you for mommy to hold you after you were already gone, the blankets they wrapped you in, your binki, one of your little stuffed animals they used to position you, all the things that were hanging in your room, and even your blood pressure cuff. I know it sounds weird, but I sat on the living room floor and just smelled all of it. I can't believe how much the blood pressure cuff smelled like you. The other stuff didn't really, because you were not in the little onesie very long. I couldn't believe it Elli, but it was a preemie outfit. I guess Mommy never realized what a little girl you were. In the box was also a memory book with a lock of your hair in it. I wanted to stroke and kiss every hair under the piece of tape, but didn't want to ruin it. Elli, I am so mad. I don't want all that stuff, I want YOU, and I cannot figure out why you are not with me. Sorry that I don't visit your grave everyday, but that too makes me so sad and mad. It makes me furious to know that you are just a few feet below me, but I cannot touch you. The dirt there on the ground is so dirty, you are prefect and I hate that that pile of dirt is what is being displayed. There is still no headstone either. I feel so annoyed that I have to decorate a grave when I should be dressing, and decorating you. Your daddy and I have been racking our brains trying to figure out what we did wrong to dissever all of this, to have a beautiful baby suffer in pain with this disgusting defect. To have you ripped from our lives, to never know the sound of your little feet on our newly refinished hardwood floors. To have to live in constant wonder of what would have been. To have the eternal ache in our arm and hearts. To want so badly to have other children, but live in fear of losing yet another baby. To try to justify in our minds why this had to happen to us. To have to rely on your Sugarbear to cuddle with because you are not here. To know that this will happen to other families and babies, and know there is little we can do to help. To never hear you call out for your mommy and daddy. To always think of you when we are at a wedding and the father daughter dance comes on, knowing that daddy will never have that moment. And to Always miss you. I wonder if you miss me too, Elli. I wonder if when I get to heaven if you will still be a baby and I can raise you for eternity, be a part of all that was taken away from me, or if you will be all grown up. I wonder if you will recognize me, or if I will have changed too much for you to notice me. I think of you always, every day. Elli, I hate the rainy days, they make me remember the day you were taken from us, that drive home was 3 of the worst hours of my life. My body was drained, physically, emotionally, and spiritually. I feel like I am getting filled back up, but it is still so hard for me Elli. I don't know how I am supposed to rejoice in a Lord that would make you suffer for days and they take you for his own. I am still certain that I need you more than he does. I don't care that heaven would be boring without young people. Or that people say "oh she was too beautiful for earth". I beg to differ. You were too beautiful to be taken away, I wanted to show your beauty to everyone I ever came in contact with. It amazes me how pretty and tiny your little features were. I love to think about your perfect skin, nose, lips, and eyes. I can't believe that your daddy and I were able to make such a precious little girl, luckily you got most of your looks from mommy! Well sweetie, it's getting late. I am going to head to bed and most likely dream of you which is what I spend most of my nights doing. Daddy sends his love and kisses sweet Elliott. Breathe Easy~ Mommy

CDH News

2008-10-09T18:52:00.001-07:00

Here is the Pumpkin that I made for our little Elli in honor of the Pumpkin Run/Walk this weekend. I put it up at her grave site. Not too bad for a Sharpie!

Hey all it has been a little while since I updated: Please keep Brad, Kellie and baby Carter in your thoughts and prayers as he is really battling since he was born a couple days ago. Also Ava who had a reherniation needs lots of prayers also as she is extubated but still very much fighting for her life. I hate CDH. In other news, I was at my sister's pre-school today visiting some of the kiddos and one of her preschoolers cousins was there to visit. She was 8 years old and a CDH survivor...What a small world. She had her repair surgery, a reherniation surgery and most recently a spine surgery for her scoliosis. Even her aunt whom she was staying with didn't even know what her birth defect was called. Man we really need to get the word out about CDH

There is a yearly memorial walk in Kansas City called The Pumpkin Run/Walk. Brian's cousin Jenny is going to be there to hand out CDH Awareness wristbands and information on CDH. I really wish that I could be there too, but I am in my best friend's wedding, and it is going to take me all day to get beautiful. We hope to raise even more awareness by everyone being able to visit Elli's blogsite and then visiting others from there. If anyone in the KC area is interested, stop by and show CDH support.

Hope all is well with everyone. Oh yah, I thought that it would be cool to know how much gas is around the country. So anyone that reads this post, add a comment on where you live and how much gas is in your area, because I think we might have about the cheapest. It was 2.69 in Treynor Iowa today...must be because of the election coming up. Yep I am officially a dork and I need to get back to work so I have something constructive to do with my time instead of wondering about gas prices in other parts of the country.

Just a Quickie

2008-10-06T18:59:00.000-07:00

Hey all still no internet but I thought I would post a quick update from my blackberry, so it will be short and sweet. Things are still going well, I don't officially start in the ICU intil the 20th, but have to do computer training and all that jazz before I can start working. Still trying to get all unpacked and start decorarating, but of course I want so much new stuff so its getting expensive,I feel like I go shopping everyday. This is pretty dangerous considering we are inbetween jopbs and we finally both get paid on friday...thank goodness I had to blow on my credit card today at Target because it was smoking from overusage. Brian is really liking the farming business, he even got yesterday afternoon off so he could get our maikbox put up,so now we can get mail...yeah! This weekend is my best friends wedding that I am in. Drum roll please...the dress fits perfectly! She ordered my pre-pregnancy size,I think as a modivator for me to lose all my baby weight. Still don't have any shoes but hey,I will just go shopping again this week. Several people asked for our new address so here it is: 36498 Brothers Ave
Henderson, Ia 51541

On a side note I got Brian a new blackberry too and he is so funny, he is downloading old rap ringtones for all his friends...he is playing them for me while I type this post.
Please all keep Ava Helmeck and baby John in ypur thoughts and prayers. Ava had surgery in iowa and babyJohn is a new CDH baby - he is at www.carepages.com.if anyone wants to check out how he is doing, so far things are looking good.

Hey Sweetie-
It was raining here today, I can't believe how much it made me miss you. It hasn't rained here since the morning of your funeral (or at least I don't think so). The nights have been so long without you here to give me a reason to be awake at all hours of the morning. Daddy even woke up oin the night to find mommy crying, but I don't even remember it, I must have been dreaming. I mainly dream of what might have been. I am having such a tough time with all of this Elli. I don't know if I believe everything happens for a reason, there is not one reason for you to not be lying in my arms right now. I know there is no answer so I should stop searching for one, but I can't seem to get it out of my head that I need to find some justification on why this had to happen to you my little sweet. Daddy sends his love and kisses, we know that you hear us everyday, just wish we could have heard your little voice. Sometimes I wake up in the night and swear that I can hear you calling for me, I hold my breath to listen better, but all I hear is the roar of silence in the house. Elliott sweetie, I love to dream about you, you are perfect and healthy in my dreams. I look forward to watching you grow and thrive in my dreams for years to come. I think of what you would be doing if you were still here with me, you would be smiling and no doubtedly laughing at your daddy's silly face and crazy anticts. Well pretty girl I could talk to you for hours on end. Breathe easy baby girl. We will miss you forever...love mommy and daddy

An addict in need of a "Fix"

2008-10-01T11:34:00.000-07:00

Wow, I feel like it has been forever since I updated/checked out all my other CDH babies. I realized that I am addicted to blogging. A lot has been going on since the last post so I will try to keep this update as organized and short as possible.

First off, we are in our new house. I didn't know if it was really going to happen since I procrastinated so much. When our families arrived, they just threw all of our junk into boxes and I got the pleasure to sort through them later, not really knowing what was in any of the boxes. There were so many little "projects" to finish up when we finally got moved up. Putting in the appliances, putting up shelves, building the dog pen, putting up our Direct TV, and on and on.

The pets are finally getting adjusted. Trigger took the move the hardest, he was moping around until yesterday, now I think he finally realizes that we are not going to leave him behind. Gabby acts like nothing is new, and neither does Molly, so that is a relief.

I have most everything unpacked. I did decide that since our house is not huge, but bigger than our old house I had no choice but to use Elli's pink and brown room. We put a daybed that I had from college in it, along with my scrapbooking supplies and table. It was so hard opening the door and seeing the crib that my parents had set up for us, but we just took it down and are going to store it for now. It still seems so weird that I walk by the door and there is no baby stuff in her room. I sat in her room for a while this morning and just cried, not knowing what to do. The house seems so empty without her there. On Sunday night, Brian and I finally got a chance to think, and that didn't go so well. It was so overwhelming, we let out a good cry and talked about Elli for about 2 hours before we finally fell to sleep from exhaustion.

About my interview, it was yesterday and it was so long, almost 3 hours. The interview went well I think, only cried once...yeah she asked me about my current employment status which led to a quick discussion about Elli. Anyways she said that she would let me know in a couple of days. Well not 20 minutes later she called back and offered me the job. I told her that I had to think about it and discuss it with my husband (so I didn't sound too eager). Either way I called back and accepted the job this morning. It is an ICU position and Jenny Edmunsen in Council Bluffs (30 minute drive from our house), and I start orientation on Monday. I am excited and nervous at the same time. I am so worried that I am going to get "flash backs" of some sort because of the hours spent at CMH. I sometimes still wake up in the night to the sound of the monitors going off and it makes me sick.

Well tomorrow I have my last day at St. Francis, it is going to be so sad. I am going to miss all of my girls there, hopefully the nurses will be that awesome at my new job.

Sweet Elli~ It has been such a crazy past couple of days, and it has been making me miss you even more. Daddy started his new job, so he has been working long days as a farmer. You would have loved riding in the tractor with him, and it would have been the cutest thing to see. When I see him driving around, I just imagine you sitting in the little seat next to him yacking his ear off and him sharing all his snacks with you just like your grandpa did with me. We went and visited your grave, I thought it would be a place that I would love to go, but it made me so sad. I cant believe that your tiny body is lying just below my feet. I wanted get a shovel out of daddy's truck and just start digging. I would give anything in the world to hold you in my arms again. I guess you being so close but being unable to touch you about made me crazy. The new house is so quiet without your voice there to fill it up, and that makes mommy so sad. Every time I walk past your room door, I stop and look inside just to double check to make sure you aren't there. This is so much harder than I imagined. Daddy and I had thought that we had prepared ourselves if you didn't make it, but we were so wrong. There is a gigantic void in my heart that I know will never be filled. My body literally aches for you to be in my arms and it is confused on why you are not there. Darn that mommy instinct, I wish I could just shut it off for a while. It is like I am constantly searching for you, and you are not there. Oh yah, Elli you got a new baby cousin yesterday, Ella Elizabeth, she is so much bigger than you were. Mommy couldn't hold her, I knew I would have had a break down thinking of you and wishing it was you in my arms. I still cant believe that I only held you for those few hours. I know that my arms were made to hold you, you were the perfect size to fit into my arms. I just know that we were supposed to be together, and no we are not. Well sweet baby, I had better wrap it up for I am getting so sad and mad at the same time. I miss you more everyday. Daddy sends his love like always. Breathe Easy~ Love you Mommy

oops, forgot to tell the dogs

2008-09-25T18:12:00.000-07:00

Okay, we must have forgot to tell the dogs that we were moving this weekend. Brian and I were taking down their pen this afternoon and they seemed very confused. We had their pen and houses loaded up and had to go to Brian's work and get a chain to pull the posts and Trigger must have thought we were leaving him behind because he chased us all the way to the corner of our land and finally stopped. Both he and Molly looked pretty relieved when we pulled back in the drive way a few minutes later.

Still on track to move this Saturday. I guess I am lacking motivation because I still haven't packed much. Okay I have not packed anything since before Elli was born. Shoot, I wish I was still nesting, I got so much done during that crazy week. I keep thinking that I will start any time, but it still hasn't happened. I guess that I will just wait for my family to come down and they can help me toss everything in boxes Saturday morning.

I went shopping with one of my close friends on Wednesday. Got a few house things, some new sheets for our beds, pillows for the new couch, and my bathroom stuff, well at least the shower curtain and some new towels to match. No luck yet on curtains. I "have" to get all new curtains and rods for every room. Went a few places, but didn't really see any that I had to have. Any suggestions for somewhere to get curtains and not have to take a 2nd on our house?

Still getting the "how you guys doing" question. I guess I am still breathing, standing, and fixing my hair, so I guess I am doing fine. But honestly how can I ever really be "fine" without Elli in my arms. Still struggling with this concept. My body (and my mind) keeps trying to tell me that I should be taking care of an almost 6 week old baby, but our house is silent with no baby in sight. I am having one regret, I wish that we would have contacted Now I Lay Me Down To Sleep NLMDTS, it is a non-profit photography service for bereaved parents. At the time, we didn't want to remember Elli after she passed away, we wanted to remember her with her eyes sparkling at the sight of her mommy and daddy. Now I really wish we would have had more pictures of her without all the tubes and wires. I was looking on the Internet last night at their work and it is not scary or gross (I thought at the time that it would be), they do it so tastefully in black and white and it is beautiful. I think that I just miss her and wish that I had more pictures to look at. I have a digital picture frame in my kitchen and I have stared at it for so many hours, I know what picture will be next.

Elli My Sweet~ We are moving sweetie, and you are going to be the easiest thing to pack, your memory travels with us everywhere we go. I know that you will be with us in our new house, bringing your warmth and spirit to it. I just wish you could physically be there with us, to feel the soft new carpet that we picked out just so you and daddy could play on the living room floor. Or to see the toy box that grandpa built so we could pick up all your toys when company came over, now we will just be putting blankets in it. I want to show you the room we painted for you, brown and pink, mommy's favorite colors right now. I want to show you everything sweet baby, but I know that you have already seen it all from heaven. It is going to be so hard to move into that new house without you, the only thing is that we will be closer to where you were laid to rest so I can stop and talk to you more, although I don't have to go there to talk to you, I do that everyday, everywhere. I am still so confused on why all this happened to you Elli. I wish that I had an answer, but know that I never will. So just give God a heads up, when I get there, it is going to be the 2nd thing I do, ask him simply..Why? What is the first you ask...why hold you in my arms and cover you in kisses, so he will probably have a good week or two before he gets my million dollar question, because it will take that long for me to put you down. Just remember Elli...Love leaves a Memory No One can Steal...I love you and miss you more every day. Daddy is so strong Elli, he is helping me so much, but he misses you so much too. We talk about you every day and thinking of all that you would have been makes us sad but also puts a smile on our face to think of you healthy, and perfect..free from pain and hurt. All the love in our aching hearts~ Mommy and Daddy

PS. we wont get the Internet for a while, so I will post new house pics as soon as we get the Internet back!...oh and sorry this was so darn long...oops

When Life Gets Too Hard To Stand...Kneel

2008-09-22T08:28:00.000-07:00

This weekend was pretty jammed packed for me at least. Went to KC to Darci's bachelorette shower, it was very fun, went out for pedicures and supper at the GrandFaloon and then just went back to a hotel suite where all us girls just sat around and gabbed. Before we met up with Darci, her step-mom and sister took me to The Primitive Peddler...the store is amazing, so much cute stuff and basically I wanted it all. It is a home decor store and everything is antique looking. I knew that I would not be able to get what I wanted considering I wasn't driving and the stuff I liked was pretty big. Good thing that the rehearsal dinner for her wedding is in the same town ( I already warned Brian that I am going to do a little new house shopping when we go). There was a room sign that I loved, and it basically summed my life up right now....

When Life gets too hard to Stand...Kneel

That is so how I feel! I have been praying more in the last 6 months than I have in my whole life (up until the age of 18 I basically NEVER missed church...so that was a lot of praying too!). At first when we were diagnosed I was mad, mad at the ultrasound tech in Maryville for essentially missing it, mad at the doctors for giving us such a good prognosis and then taking it away at every ultrasound there after (Elli started out with a 90% survival rate based on organ involvement and lung to head ratio and by the next ultrasound was below 50%, and finally we stopped asking about survival and lung head ratio because it just made me more mad) mad at myself for being so cautious (I had no showers, purchased next to nothing, and did not decorate a nursery) and at times mad at God. Why would God do this not only to us, but to an innocent unborn baby. They deserve no pain, it isn't her fault that this happened, and yet she will have to endure so much just in order to survive. Why would God ever do this to a baby? I guess this is the million dollar question.However our pastor made an interesting point, it is so easy to blame God for the bad in our lives, but hard to credit him with the good. The fact is that God made man, man made choices, and the choices are reflected in every day life. If CDH is caused by some sort of chemical or something along those lines (a researcher on sheep thought that it might be a chemical used on farms...long time ago, not widely accepted) either way man made those chemicals. God gives us life, it is what we choose to do with that life that is up to us. It is not God's fault, it is no one's fault and every one's at the same time. It is called life and humans. I guess if I am going to stick God with Elli's passing, I will also have to praise him for giving us the doctors and nurses who know so much to have kept Elli alive for those precious, unforgettable, amazing 20 days. He gave life to the person that invented ECMO, to the surgeon's hands, to Dr. K's awesome brain and insight. Of course when Elli was taken from me to meet her maker, I was blaming God, not praising him, but now that I have time to look pack (and calm down) I can see that there were good things that he needed to be credited for. Holy cow how did I get way off on this tangent...sorry.

Anywho, the bachelorette party went well, and on Sunday we traveled to Lamoni Iowa to watch my nephew Aaron play football, he had a sack and a fumble recovery, and his team won! I am not sure what position he plays but I know it was on defense. It was so cute so see all those little boys running around. He plays on the 5th and 6th grade team, and they even have cheerleaders ( my school was small and there was no little league football and def. no cheerleaders that young). Afterwards we all went back to Brian's sisters house for her husbands birthday. I got the pleasure of reading about 20 books to my nephews (Kyle and Kevin they are twins who are 3). It was good to be around them, but it made me miss Elli even more. It was so cute Kevin came up to me and was patting my belly (we had told him that there was a baby in there and he had felt Elli kick a couple weeks before she was born). He didn't really say anything, but just kept patting it as if to say...where did that baby go that was in there, because honestly I sometimes do the same thing too.

I got a call from the breast milk bank in Ohio, I think that Children's Mercy is finally going to get that milk out of their freezers. I was told that I could donate my milk, but I just figured that most large cities had milk banks. Not the case, the closest is in Iowa, but I guess they don't accept out of state milk. Either way, I did a phone interview of my pregnancy and lactation habits...I passed so now they are sending me more paperwork and I will have to submit a blood test and then they will be able to take all Elli's milk and give it to sick babies. I am glad to know that it will get used, man I worked hard to get all that, I would hate to see it all thrown away.

I go to the doctor this afternoon to get released to go back to work. I know it has only been 5 weeks, but since we are moving at the end of the week, I wanted my follow-up appointment to be with Dr. F in Maryville since he has known my whole pregnancy history.

Sweet Elli-

Last night was excruciating, my heart literally ached with sadness. I miss you so much. Reading to your cousins made me long to hold and touch you even more. I could imagine you sitting there on my lap between those two ornery boy just watching their every move. It has seemed harder lately, knowing that things will be going back to "normal" Mommy will be going back to work soon, and daddy starting a new job. It is going to be so hard moving to OUR new house. You were supposed to be moving with us. It is going to be so hard going into your room and not seeing your beautiful smile. I had to leave the door shut when I was there last week, it was just too hard to see. Looking at your pictures helps, but those darn frames are so pointy when I try to hold them in my arms. Daddy misses you too, we love to talk about you and what might have been. I insist you would have been a girlie-girl always in dresses, but he says that he would have taken you hunting and you would love cammo. We could compromise...a cammo dress. I picture you in every stage of your life and it breaks my heart. Last night lying in bed missing you, daddy asked what I needed. I told him that I needed my angel to come back to me. I know that is impossible Elli, but know that I dream of the day that I will be able to come back to you, back to where we all ultimately rest...until then, say hi to Parker and Will I know that you three will be the best of friends. We miss you dearly sweet Elli, breathe easy!- Mommy

Angel Elli's Mom

2008-09-19T18:34:00.000-07:00

This week has been pretty good, still having good and bad hours. I think that all the funeral business is taken care of aka the bills. Today we ordered Elli's headstone. It's nice, but not exactly what we wanted. Where Elli was buried doesn't allow any headstones that are above ground level, so basically we had to just do a marker. We ended up picking one that is a larger size than the normal "grasser" size so it might take up to 90 days for the granite to be cut. Hopefully it will come in before the winter "freeze", since they cannot install headstones from the end of December through the beginning of March. As for now Brian and I are putting up a temporary marker, hopefully no robbers get it (apparently people steal from cemeteries).

I think that I got all the Thank-Yous sent out, usually whenever someone gives me anything (even supper at their house) I send a Thank-you the next day. I am kind of a Thank-You nazi, anyways, not getting thank yous out until almost a week later was driving me crazy. I signed all the cards with ALL our names. Also I have been posting on many other CDH blogs and have been signing them Angel Elli's Mommy - Cassi. I don't want anyone to forget that I am a mom (including myself). I will always be Elli's mom, but to others I don't look like a mom, and part of the time I don't think of myself as one either. (no scolding, I am working on it!). Also, just to continue to babble, I have noticed that I am now on the "Angel" list on many other CDH blogs. When I was researching CDH I noticed these lists on many of the blogs. There are usually two categories...CDH Survivors and CDH Angels. I would have never imagined that our baby would be on the Angel list and the first time I saw it I started bawling. I am slightly getting used to it, but still get that feeling in my stomach when I see it (that feeling that you get in your stomach when you pass a cop while speeding, just knowing that he is going to flip his lights on and whip the cruiser around and slap you with a fat ticket....you all know what I am talking about). Bottom line, I am Angel Elli's Mom.

In other news, went out for the first time in quite a while with my girlfriends from the hospital and ended up running into many other friends including some sorority sisters. It was so nice to be out of the house, but as soon as I got home I started to feel guilty. What kind of mom goes out this soon after the passing of her beautiful baby? I am sure I was just missing Elli, and those 4 beers didn't help at all ( first beers since December 7th...and yes I remember the date..NWMUS Semifinal game) and I got really upset. I know that I have to continue to have a life and my friends were just trying to help get my mind off everything, but it is too soon to "get my mind off" Elli. I love talking about her, basically to anyone who will listen. I was even telling this lady who called me for an interview today about Elli, poor lady doesn't even know me and I was telling her about Elli passing away. Oh yah, I applied for a job at Jenny Edmunsen in Council Bluffs on a whim on Wednesday and they called me back yesterday and go for an interview on the 30th. Not a NICU position but it is an ICU position. Apparently Jenny Edmunsen is building a NICU in the next year or so, and as for Children's in Omaha, I didnt really see any openings.

Well this post is pretty random, and way too long. Just a house update, got the counter top in, and all furniture arrived right on time. Move in date is next Saturday. Brian is out with friends from out of town (boys night out) so it's just SugarBear and I tonight watching What Not To Wear...yep I am officially lame. Oh well, going to KC tomorrow night for my best friend Darci's bachelorette party (no stripper men..or so I am told), so that should be fun.

Angel Wings

2008-09-16T20:20:00.000-07:00

Another CDH Angel earned his wings today. After a courageous 29 day battle, Kaden Morrow passed away in his parents arms. He amazed doctors, nurses and his parents by his amazing determination and fight.

I am so saddened by the passing of Kaden, it seems like CDH is winning lately and it makes me mad. The last several babies that I have followed on my blog have lost their CDH battle, currently Baby Catherine who was born the same day as Elli is still fighting, and is doing well. She was extubated yesterday and is on the CPAP machine. I just wish that things were different and I was hearing more success stories. In the last few months, Ethan, Seth, Will, Elli and now Kaden have all lost their CDH battles. I feel like with all the technology and advances in medicine, CDH should be having a better chance for success, but there is still only an overall 50% chance of survival. One of our nurses at Children's was telling Brian and I that she had been a NICU nurse for 30 years and an ECMO nurse for 17 and the overall survival of CDH babies has not changed for over 30 years. These babies are the sickes in the NICU and the hardest to treat. Why is this devastating defect so unknown, I don't know the answer to that, but I hope to continue to spread CDH awareness in the name of Elli. I am trying to think of something to help raise awareness and start some sort of foundation. Lots of ideas, but nothing solid yet. We received so many memorials and I want them to be used to get the word out about CDH and raise awareness. Either way I guess at least Elli has lots of little boys to play with in heaven.

Elli Sweetie- I miss you so much, my arms ache with emptiness as I look at your perfect little face in pictures that I have set up around the house. Daddy is back at work, so that leaves me home thinking about you. I know that you are breathing easy in heaven, but I wish you were still here with me. What I wouldn't give to have you in my arms for just another hour. I feel like we were just getting to know each other when you were called to heaven. Every time I hold onto your SugarBear I think of how strong you were and I try to be the same. I love you sweet baby girl. Daddy also sends his love. We think of you every minute...

Now What...

2008-09-14T15:15:00.000-07:00

First and foremost, Brian and I must thank everyone for their amazing support during the last week. Knowing that so many people have continued to follow us on our journey and have never stopped praying for us has brought us to tears on numerous occasions. The outpouring of support at Elli's visitation and funeral touched our hearts so deeply. Seeing our friends and family has helped both Brian and I. So many people said "I just don't know what to say" during the last several days, but in all reality, Brian and I know that there are no words, but the heartfelt hugs have made all the difference. We are still in awe of the amount of people that have followed Elli's blog. We have received cards and letters from "bloggers" that we have never even met. It just blows my mid that our sweet Elli could touch so many people, enough for them to take the time to send their sympathies to her parents. We knew from the beginning that Elli would be a special gift, but we had no idea the impact this single baby girl would have on not only her family and friends, but an entire community and beyond.

For those who were not able to attend the visitation or funeral, just know that it was beautiful. We feel that it was such a fitting tribute to our little Angel. The morning that Elli passed away, the sky opened up and it was raining. We felt that it was so fitting that God mourn the passing of Elli as we were also in mourning. It continued to rain the entire week off and on and even continued during the visitation. On our way to Iowa Saturday morning, the rain had slowed, but it was still misting. As we were about to the cemetery, the sun finally appeared between two dark clouds and was shining down on the cemetery. We felt like this was a sign not only from God but Elli. We had been so confused and sad wondering through the week. It was like they both knew that this was a way of showing us that Elli was finally going to be laid to rest and that she was happy being right at home with the Lord.

As for the burning question, Now What? Brian is going to go back to work this week for the Township and I am going to finish packing up the house. We are not planning on moving until the weekend of October 1st. As far as moving goes, Brian already has his job lined up, he is going to be a Farmer with my dad, so harvest will help keep him busy. And for me...I don't know quite yet. My plan was to stay home with Elli so I hadn't even looked for a job. I guess luckily as a RN I will be in high demand, so finding a job shouldn't be that hard considering that Council Bluffs and Omaha have numerous hospitals and they are only about 30-40 minutes away from where we are moving. I am contemplating finding a job somewhere as a NICU RN. I want to feel like Elli's journey and passing were supposed to teach both Brian and I something. I don't know if our experience would be able to help others going through and facing difficult decisions. In one aspect I know it will be so incredibly hard to be around so many sick babies, bringing back so many memories of our stay with Elli at CMH. On the other hand, I feel like I have seen just about the worst things that can happen and so want to be around other babies. As for now I am still going back and forth on it, and might just go back to regular nursing and ease back into it. It just seems so odd. I know that I gave birth to Elli not even a month ago, and yet I am sitting home alone. The house feels so empty (Brian is out hunting). I had imagined months ago when I was just lying around waiting for Elli to come, that I needed to enjoy these last lazy Sunday afternoons, because once Elli was here they would be few and far between and I would be wanting to do "nothing" again. Now the quietness of the house is so disheartening and I feel like I need to fill the lazy Sunday afternoon with something to do. Maybe this is all coming to a head because this is basically the first time that I am alone. We have had family and friends around us constantly for the last week, or at least we were with each other. I knew that things would be going back to "normal" after the funeral but it is still so hard. I am glad Brian is out hunting with his dad and our nephew to get his mind off this whole thing for a while. I guess I am going to have to find a couple hobbies considering I am still on "maternity leave". Okay this is getting long and I could ramble forever, I guess I will clean the house (those of you who know me personally understand my OCD) considering I have neglected it a little the past few days.

Again thank you for all who have sent your thoughts, prayers, and attended the visitation and funeral. It all meant so much to us.

We will all continue to miss you Elli, every day, every hour, every minute, every second. You will NEVER be forgotten. Your mom and dad love you more than anything. We still get to see your beautiful smile in our dreams. Our hearts are still heavy with sadness, but we know that you are much happier in heaven than you were here on earth. We love you Elli- Mom and Dad

Driving Directions

2008-09-11T15:27:00.000-07:00

Just a quick note to let everyone know that we are "hanging in there" Things are going as well as can be expected and all arangements are made. Thought I would give some more details about the visitation and graveside service. The visitation is at:

Price Funeral Home

120 E. 1st Street

Maryville Missouri

Just a side note for those coming in from out of town from the south, Main street in Maryville has been closed for quite some time for road construction, so take the detour by HyVee to the East and take Market North to 1st street with the parking lot on the right hand corner of Market and 1st street.

The graveside service will be held at St. Paul's Lutheran Cemetary outside of Treynor Iowa. If the weather is looking really bad, were talking down-pour, check at the church first. In case of inclement weather, a service will be held at the church with a small family burial to follow. Friends and extended family will be asked to stay and visit at the fellowship hall until the immediate family returns to the church for the luncheon, but this is only the case if it is raining like crazy. Hopefully this will not be the case and we can just continue with the graveside service. If weather is an issue, anyone can contact the church and they will be able to let you know if there have been any change of plans.

St. Paul's Lutheran Chruch

12 Park Street

Treynor Ia

712-487-3880

St. Paul's Lutheran Cemetary

Driving directions from Maryville:

North out of Maryville to Hwy 71

Continue North on Hwy 71 North of Braddyville Ia

Turn West (Left) onto J-64. Approx 20 miles.

Turn North (Right) onto Hwy 59.

Continue North on Hwy 59 to Carson Ia

Head West on Hwy 92 towards Treynor.

Travel through Treynor past Casey's approx 1 mile.

The Cemetary is on the Left Hand 9south) side of Hwy 92.

Holding Elli

2008-09-10T22:54:00.000-07:00

Elli finally where she belonged, in her mommy's arms. She was a perfect fit in my arms and I could have held her for days on end.

There are no words to describe how much love I felt holding Elli for the first time. It is such a simple pleasure that most people take for granted, but it will be one of our best memories that Brian and I will have for the rest of our lives.

It was amazing the sense of calm that came over Elli as she was placed in her Daddy's arms. This is one of the most beautiful things that I have ever seen. The most strong and loving husband holding our precious daughter.

Elli was able to feel the warmth and security of her parents arms for about 4 hours before she was able to join the Lord and feel his warmth and security for eternity.

We know that Elli's death came to a shock to many, and I guess that is partially mine and Brian's fault. We could see that on Friday night that Elli was not doing well at all and continued to decline Saturday and Sunday. Over those three days Elli's oxygen saturations were averaging in the mid to upper 60's to low 70's and they were unable to get them back up. She was showing severe right sided heart failure, her pulmonary hypertension was worsening, and because of the amount of time that her oxygen saturations had been so low, the doctors were fearing she had sustained severe oxygen deprivations to her brain. Also, Elli had been so uncomfortable and grimacing that they were increasing her Morphine and Versed drips, giving her Fentanyl every 2 hours and started giving her phenobarbital (high powered drug to help keep her sedated) and even with all of this she would still wake up cringing and had her toes curled under and her fists balled up. I know that we don't have to justify anything to anyone, but we just want everyone to understand some of what we were facing.

Around midnight the nurses finally laid my baby girl in my arms for the very first time. I held Elli for almost 2 hours and she was so calm and content. Her body was relaxed for the first time in almost 2 days and she looked so peaceful. It was truly amazing to see the comfort she received by just being placed in our arms. Brian then held Elli and she became even more relaxed and you could just see it in her face that she was so happy. We were able to spend those last 4 hours with Elli comforting and holding her like we had wanted to for her 19 previous days of life. We are so fortunate to have had those last precious hours with our baby girl. A little after 4 am the nurses removed her breathing tube, and she was able to pass away peacefully in my arms, with her daddy whispering in her ear, that she was free to go, to join the lord, and that she would be forever pain free. That it was okay to stop fighting and that we would miss her. She opened her eyes before she passed away, to look at us as if to say "goodbye".

I am not strong enough now to explain the feelings leading up to these moments, or the emotions during and after, but can say that we were right there with Elli every step of the way. We are both so lucky that we were able to spend the time with Elli that we did. The past 20 days have taught us alot about ourselves, restored faith in the lord and humanity, and will shape the rest of our lives.

Arrangements Made

2008-09-08T17:40:00.000-07:00

Cassi and I have decided to celebrate and remember the life of Elli with a visitation in Maryville Mo Friday September 12 at Prices Funeral Home from 6 - 8pm.

Elli will be laid to eternal rest with a service being held at the St. Paul's Cemetery just west of Treynor Iowa at 11:00 am on Saturday September 13 with a luncheon to follow at St. Paul's Lutheran Church. (Directions to follow later)

In lieu of flowers we ask that those who wish to make donations do so in Memorial of Elli or to The Ronald McDonald House of Kansas City in memory of Elli Reed.

We are so grateful to all of our friends, family and CDH family that has been nothing but supportive during this difficult time and difficult decisions. Just reading all the comments this afternoon made us realize just how much our Little Elli touched so many while so few got to meet her. She will truly be missed. Although we held her in our arms only for a short time, she will be forever held in our hearts.

Mommy and Daddy miss you Elli, more than you will ever know. Today has been the worst and best day for us. Although you traveled to Heaven today, we were able to enjoy your last few hours on earth resting comfortably in your parents arms. Elli you felt amazing in Mommy's arms and I never wanted to put you down, but I knew it was time to let you go. Your dad and I only wanted what was best for you, we wanted to be selfish and keep you here with us, but we knew that you were ready to go and breathe easy in Heaven. You will never again have to feel any pain or discomfort, and that helps comfort Mommy and Daddy. We love you sweet baby girl and will think of you every single day until we can once again hold you in our arms forever. But for now rest in the warm arms of the Lord, knowing that he will hold you close until we meet you in Heaven. We know that you will be watching over us for the rest of our days. We miss you sweetie, you were so strong and brave and fought so hard, and we are so sorry that you had to endure so much in your short days here on earth. Our hearts are overflowing with grief, but we know that you are in a much better place. All our love forever- Mommy and Daddy

We'll Miss You Sweet Baby

2008-09-08T09:30:00.000-07:00

Elliott Arcile Reed passed away this morning at 5:10 am in her mommy's arms. After a long hard battle. We had seen her go down hill the last three days. After finding out we had exhausted all the means possible, were about to venture into the experimental side of medicine, her right lung was collapsing more and her heart was failing Cassi and I asked her and the doctors to stop fighting. It has been excruciatingly bitter sweet chapter in our lives. We are sorry it has come to an early end. We thank god for all of you who have supported us by any means, cards, calls, visits, posts, or just following our journey we are going to be sleeping and holding one another for the rest of the day. Details on funeral arrangements to come when we know more.

Day 19

2008-09-07T19:13:00.000-07:00

Elli had her ups and downs again today. The doctors are still very concerned that Elli is not showing any progress even with all the medication changes they have tried. Her pulmonary hypertension is still incredibly high, and they have not been able to wean the vent settings at all, even when this morning her gases looked great and her saturations were in the 90's. It seems like that any little adjustment the doctors try to make, Elli does not respond well to it. Still trying to sort out if there are any other medications to put her on that will help with the pulmonary hypertension, but since she is not eating it is limiting. Some meds that might help can only be given via the gut and since she has not eaten, that wouldn't really work. So now we are left to wait, not knowing if Elli will start responding to any of the interventions that the doctors throw at her. Tomorrow the Neonatology team is going to have a conference about Elli to see if anyone has any new ideas to help with the pulmonary hypertension. As of now, the HFOV seems to be doing more damage to Elli's lungs than good. They need to wean her off of it, but they can't without causing an increase in her hypertension. The doctors are trying some heavier sedation medications and have even toyed with the idea of temporarily paralysing her. Sorry this post is so late, Brian and I are at a loss for words.

No Changes

2008-09-06T21:48:00.000-07:00

Just thought I would put a picture of our dogs on Elli's blog considering they are soon to be "big brother and sister" to Elli. Molly is our black lab and Trigger is our yellow lab.

Oh yah we, or at least I miss Gabby our cat too!

Elli had her eyes open for a little while yesterday afternoon. Brian enjoying some Father-Daughter bonding time. It is so reassuring to see her eyes open, but so hard at the same time.

Her little black belly button is just about ready to fall off.

Elli spent almost 20 minutes yesterday just looking around and up at us, without being fussy. She is just so adorable, we did sneak a few kisses when nobody was looking.

Elli continued to have a fairly stable day. Her satruations have not dropped below 80% all day, even with cares and diaper changes. Her blood gases have stayed almost identical, so on that note, as long as the 1 o'clock gas looks the same, that will be almost 24 hours of acceptable gases...Way to go Elli! Talking to the doctor this evening, we know that Elli is still very sick, and this is still a very serious situation. It might be a "honeymoon" period for the new drugs, or it might be the rest that she needs to move onto the next step. Dr. A said that with the gases that Elli has been having, normally she would try and wean the vent settings, but with all that she went through last night, she is going to let Elli rest up and my guess is when Dr. K gets back tomorrow he will be making some changes, but hopefully they are small and slow. Today's chest x-ray looked a little better than last night. It still appears that Elli may have some atelectisis (collapsed lung tissue) in her right upper lobe, but the doctors still can't determine if it is that or a shadow from the hematoma from the ECMO cannulas. Her left chest cavity appears to have some air in it. It could be air around the left lung bud, or possibly the left lung bud was over inflated and essentially "popped". Either way, it appeared last night that all the extra air on the left side was squishing the heart and right lung. But now today it appears that the chest tube is keeping he air to a minimum and the heart is a more effective pump as evidenced by her better blood pressures and decreased pulse rate.

Since things are looking about as stable as they can be without actually being stable, I think that we are going to call it a night much earlier than the last several. It wont be too early considering that it is already after midnight now. Brian did get to watch part of the Bearcat game this evening, but it started at 6 and with shift change he missed part of it because the Internet at RMH is not near as fast as at CMH. Wanted to put Elli's NWMSU booties on, but she doesn't really have any hands or feet without anything on them (arterial line, midline IV accesses, and the saturation monitor) so maybe the next game she will get to show her Bearcat pride. Brian is sitting by Elli right now and she must like it because her saturations are 88%, that is about the highest they have been all day. Heck they just hit 89%, she must know that her daddy is sitting next to her sending his love. Guess that's about all I know for tonight. Just trying to take it one day at a time and enjoy the time with Elli each day, especially when she wakes up just enough for us to get a glimpse of her beautiful blue eyes, it seems to make the long day so worth it. Keeping the faith in KC. On a side note, Brian and I are so home sick, just letting everyone know that we are thinking about our family and friends and know that we miss you all very much and cant wait until Elli is stable for everyone to come down and meet her. I cant believe I am saying it but I think that I miss Burlington Junction. Looking forward to a restful night for all three of us. As always thanks for the continued support. Brian, Cassi and Elli

Day 18

2008-09-06T12:53:00.000-07:00

Brian and I finally called it a night, or morning however you look at a little before 5. Her next gas wasn't until 6 am so we decided that we had better get some sleep. Elli has been looking better this morning and into the afternoon. Her blood gases continue to be more stable, CO2 levels in the 40's and O2 levels in the 60's. They defiantly could be better but as long as they don't start going down, the doctors are willing to accept these numbers. Her saturations have dropped a little bit, they were in the upper 80's and now are sitting around 81-82%. The doctors did increase her Epinephrine just slightly to try and keep her saturations up. Also on her morning CBC her C reactive protein (indicator of infection) was up to 12 where it had been 8, so they once again switched around her antibiotics. They stopped the Flagyl and started Diflucan. The nurse Phylis has been giving Elli her PRN Fentanyl and Versed about as often as she can to try and keep Elli calm so we wont fall into the afternoon funk that has been the trend for the last few days. Not much else going on, getting a chest x-ray and keeping quiet. Much calmer than yesterday, but we'll see how the rest of the night pans out.

3:15 Gas

2008-09-06T01:17:00.000-07:00

Just got the 3:15 gas and it looked so much better. Elli's pH is in the normal range, no base excess, her CO2 was 40 and O2 was 56.9. So much better. Looking forward to more of these. Thanks Elli, now mommy and daddy can breathe.

Giving Us a Scare

2008-09-06T00:29:00.000-07:00

It's 2:30 in the morning, Brian and I have been sitting/standing by Elli's bedside all day. It has been a really rough day, Elli's saturations have been hovering in the low to mid 70's most of the day. When we got back from shift change Elli didn't look very good at all. She was dusky and bluish around the nose and mouth. The doctors were very concerned because of the consistantly low saturations, and by the looks of the x-ray at 10:00 and today's ECHO it looked like it was more a of a heart problem then a lung issue. The doctor flat out told us that Elli was in serious trouble and "in heart failure." Well 2 hours and 30 minutes later they started some new meds. Brian and I were very upset thinking that we were loosing our baby and when we asked the doctor about it she said that she meant that Elli "could" go into heart failure...very big difference from "could" and "is". Either way after much pacing and crying they started Elli on two new drips. They started Epinephrine to raise Elli's systemic blood pressure, and then started a prostaglandin to try to make the right side of the heart not pump as hard. At first it looked like it wasn't going to work, her blood pressure and pulse sky rocketed and her oxygen saturations dipped into the low 60's, but slowly the saturations started coming up and her blood pressure leveled out. It wasn't until after all the drips were started that the doctor told us that she had never tried this combination before...not too reassuring, but she had been discussing Elli with several other doctors in the NICU and PICU throughout the day. As of now Elli's saturations are sitting around 89-90 which is much better. The nurse is drawing blood gases every 2 hours, so hopefully the next one will look better. Elli was in metabolic acidosis earlier, but her pH seems to be rising slowly so that is a good thing. Dr. M would like to see Elli's blood gas level on oxygen in the 60's which it was 38 on the last blood gas. The next gas is not until 3:15 which we will be staying to hear the results.

As far as Elli goes, she looks comfortable and has not been grimacing or acting like she is in pain for most of the evening. There was a slight miscommunication between the resident doctor and the nurses. He told the nurse not to use the PRN Fentanyl that they didn't want her blood pressure to drop too much lower, well the last day and a half the game plan had been that any time the nurses were to do cares, before they even touched her they were supposed to give a PRN dose of the Morphine (yesterday) and Fentanyl (today). So when I was helping the nurse reposition Elli after shift change I noticed that she was very fussy and her saturations were dropping and I asked if she had given the Fentanyl yet, and she told me that the resident doctor had said not to. Needless to say after saturations dropped at one point in the 50's the resident doctor came around and asked why she was so low. Well clearly she was upset and had not had any pain medicine. Either way he said that he mis-spoke and that she could have her PRN Fentanyl when the nurse had to do cares. It only took 3 hours and two new medications to get her saturations up to where they started before her repositioning and diaper change. I hope that this information about the PRN's is well circulated through the doctors and nurses so Elli won't have to battle to keep/get her saturations up. I don't mean to vent, but for a while Brian and I were pretty ticked. It didn't help that we could clearly see that Elli was not doing good so that just added to the frustration. Things are looking a little better now, defiantly not out of the woods by any means. But as always Elli is a little fighter and is trying to hold her own. Trying to keep the faith. Brian, Cassi, and Elli

Day 17

2008-09-05T15:04:00.000-07:00

Elli had a pretty stable night last night, she seemed to really like the Dopamine and was even awake for about 30 minutes last night around 3 am. We stayed until almost 4, too nervous to leave, but our tiredness got the best of us. When we got here around noon, Elli was up to her old habits, having bouts of fussiness and saturations in the mid 70's. We have yet another new doctor today, Dr. M. She ordered another ECHO of Elli's heart, and basically it shows that her pulmonary hypertension is still very high. The doctors are trying all they can to help Elli be comfortable to decrease the resistance on the blood flow. Because the anatomy of her lungs is so different because of the growing conditions, her lungs are very muscular and sensitive. They essentially "spasm" every time that Elli is touched, in pain, or gets upset. They did change her PRN pain medicine from Morphine to Fentanyl, it is in the same family of drugs as Morphine but works quicker. The down side is that Elli will build up a tolerance to it quicker than she will on the Morphine, but as for now, the doctors are more concerned with keeping her as comfortable and pain free as possible. Our new doc, Dr. M did some brainstorming with some of the other Neonatologists on other teams here at CMH and they decided that they would try one more drug to try and relax the right side of her heart to decrease the pulmonary pressures. It is the equivalent of Viagra and has to be taken orally. So the nurse gave it through her OG (oral-gastric) tube and is leaving it clamped off for an hour. Also they decided to change her chest tube from bulb suction to a water seal chamber to see if she had an air leak because it stopped draining in the night. So far no leak, but very little output, so it might have a clot somewhere, they are unsure. They doctors have left the vent settings alone, thinking that it has more to do with lung/heart compliance and turning up the vent settings to try to oxygenate will only further agitate the already sensitive lung tissue. So of course we wait and hope that the fine tuning med changes will help decrease the pressures. This is so common in babies with CDH and we knew that Elli was likely to face this sort of problem. Basically we give the meds and her time to work things out, after all she is only 2 days post surgery. So of course more ups and downs, just tyring to rid this thing out. Keeping quiet, and our hands off. Brian, Cassi, and Elli

Shhh....Elli is Sleeping

2008-09-04T21:38:00.000-07:00

Well since the 4 o'clock gas things have been pretty rocky. Elli's saturations were down in the low 70's and hung out there for a good 4 hours. Of course today was going to be tough anyway knowing that Dr. K was going out of town, and then Elli decided that she wanted to "act up" Anyways 3 chest x-rays and and abdominal x-ray later it was determined that Elli's right lung was over inflated. This is a problem because over expansion causes the HFOV to not be able to "shake" her lungs as much thus reducing the amount of CO2 that can be blown off. So of course the doctors tried to mess with the vent settings, but really to no avail. Turning down the MAP and the Delta P up seemed to slightly help the right lung for a very short time period, but they were concerned that the left lung was now being under inflated. Several blood gases later it was determined that Elli was still not ventilating or oxygenating very well, but they couldn't really find a reason. They ran a CBC (complete blood chemistry) to determine if her white count had risen (would indicate infection) but it didn't really change. The doctors decided to stop the Gentamycin and change to a more broad spectrum antibiotic, and decided to add Flagyl (an anaerobic sensitive antibiotic that works on bugs found in the gut) in an effort to cover all possible infective organisms. Really none of the cultures or blood draws were leaning towards infection, they were just concerned about the recent surgeries and the fact that she did have a temperature during the night.

At 7 o'clock we had to leave for shift change which about killed us, knowing that Elli was still having saturations between 71-76%, and knowing the doctors really didn't know how to bring them up. They tried changing out her endotrachial (ET) tube because it was the one that she was intubated with at birth and it had developed an air leak. This was causing the HFOV to not be able to keep a constant mean airway pressure. Even after the ET change her saturations didn't improve and the doctors were considering trying Elli back on a regular vent since they had decreased the HFOV settings down to where it wasn't really doing a much better job than a regular. So we didn't know what to expect when we got back after shift change.

The new attending doctor on for tonight, Dr. M decided to try starting Elli back on her Dopamine (they stopped it). He was concerned that Elli's pulmonary hypertension was getting worse because of the over inflation and that the right side of her heart was having too high of pressures causing deoxygenated blood to be shunted to the left side causing it to mix with oxygenated and then recirculation in the body thus causing the overall decrease in her oxygen saturations and increase in the amount of CO2 in her blood. Well as of midnight her oxygen saturations have been looking much better averaging between 85% and 90%. And also her last blood gas looked slightly better, she was very acidotic earlier today and that is starting to get closer to normal range. Normal pH is between 7.35-7.45 and Elli's blood gases today have been running around 7.15, but the last was 7.25 so it looks like she is going in the right direction. Also her base excess (measures the compensation factor in metabolic acidosis) was around 7-8 and on the last gas was a little over 4, so hopefully the next gas which our night nurse Kelly (has been on the last 3 nights) is currently drawing, will continue on the same trend.

Elli seems much more comfortable, it looks like the increase in the Morphine drip has helped as well as the nurses staying on top of the pain with extra PRN doses of Morphine and Versed whenever they have to do any assessments. Basically we are trying to stay super quiet, and not do anything that could agitate her. This means no touching or talking. It's hard, but whatever is best for Elli is what we will do.

Brian and I both knew that this was going to be the trend for a little while, things look good then they take a dip and start to look better again. I guess we were just hoping that last night Elli was going to "turn the corner" so to speak and start steadily improving. It is so hard not knowing what exactly is going on, and seeing the doctors puzzled really puts a strain on us emotionally. This afternoon was pretty trying, but as of now Elli seems to be doing a little better, and will hopefully continue to become more stable as the doctors try to determine the best avenue to pursue. I am sure we are going to stay at the hospital late again tonight, even though we are unable to touch or talk to Elli, we feel better knowing that we are at least near her. As always taking it day by day and thanking everyone for continued thoughts, prayers and support. (sorry no pictures...it's kind of like a museum, no flash photography)

Sorry just one more thing, last blood gas just came back, looking better, seems like if this trend will continue she will be back in the acceptable parameters soon. But shh...we aren't going to tell Elli she is doing better, we'll let her sleep.

Pain Management

2008-09-04T13:31:00.000-07:00

Overall on a whole, Elli had a good night and day today considering she had surgery yesterday. Last night when Brian and I were getting ready to leave, I went to give Elli a good night kiss and she felt very warm to me. I took her temperature and it was 38.1 C (around 100.6 F) and I noticed that she was sweaty and had little tiny water blisters on her face. Of course this was around 2 and our nurse had just gone to lunch so another nurse was babysitting. I moved the radiant warmer off of her and she finally started to cool down. Needless to say we didn't leave until around 3:30 when Elli finally calmed down after another round of PRN pain medication. Last night at midnight Elli had her best blood gas ever, luckily they were cautious and didn't try to change any vent settings last night and let her rest and recover from the surgery.

This morning Elli was doing very well and the nurses were able to decrease the MAP on her vent settings (helps with oxygenation) and lowered the FIO2 (% of oxygen delivered via the endotrachial tube). I guess that once all the sedation meds from yesterday's surgery must have worn off because Elli started getting really fussy around noon, and her saturations were hanging in the low 80's. Even daddy holding her hand and humming a little tune didn't seem to help her calm down. She had been thrashing her arms and having a lot of facial grimacing, so Dr. K had the nurse turn up her Morphine drip to 100 and said that she could give her an extra Morphine bolus and that really seemed to help with the pain. She calmed down for about an hour until she had a wet diaper. For some reason she doesn't like to sit in wet pants...cant imagine why. Hopefully with a couple more Morphine boluses and increasing the rate, the doctors will be able to get on top of her pain which will help with her numbers overall. After they bolused her the first time her oxygen satruations were in the mid 90's, her blood pressure was lower (oh yah, Elli now is having high blood pressures 80's/60's, so they stopped her Dopamine drip) and pulse.

As far as her blood gases go, they have been pretty consistent, no real ups or downs. The next gas is at 4 but who knows what that will look like. It doesn't sound like Dr. K is to intent on weaning the vent settings until he can get Elli's pain manageable, so hopefully that will happen tonight. Brian and I just feel so helpless that we cant really do anything to calm or comfort our baby. Even just touching her makes her more agitated, so we have just been trying to let her rest.

As far as her closure surgery yesterday, everything looks good. Dr. K changed her dressing on her abdomen today and said that it looks nice and pink, no redness and it doesn't appear to be getting too swollen and tight, so that is good news. Also her chest/abdominal x-ray looks good. The hematoma appears to be almost gone, the right lung is well inflated and the left lung is still incredibly small but also inflated.

A lot of people have been asking us for our address at the Ronald McDonald house so I thought that I would just post it so whoever wanted it could copy it down.

Ronald Mc. Donald House

2501 Cherry St.

Kansas City, MO 64108

Attn: Brian and Cassi Reed Room 207

So it is a pretty quiet day down here in Elli's room, least wise we are trying to keep it that way. Still much of the same, staring at monitors, visiting with doctors, and holding our breath for the next steps, knowing Elli will take her time and progress at her own pace. If Elli is up for it I will try to get some more pictures to post, but as for now we are all trying to keep a low profile and keep Elli as comfy as possible. I guess we now need some Pain Management prayers. We continue to be in awe of the amazing outpouring of support. Thanks to all. Brian, Cassi and Elli

Goodbye Mr. Silo

2008-09-03T20:01:00.000-07:00

This picture was taken on Monday, thought it was a cute one. So Bright Eyed!

Right after surgery, so sleepy.

SugarBear and Elli showing off their stomachs.

Just a couple hours after surgery, so tired but need to sneak a peek of mom and dad. (I think I have seen Brian do the "one eye" look before too!)

Elli came through her surgery doing very well. They were able to fit all of her intestines, stomach, and spleen back into her abdomen by the aid of an Alloderm patch. The patch is between the skin and the muscle attached to the fascia. The surgeon said that her tissues will grow into the Alloderm patch and there will be no need to have it removed. They were able to close the skin over top of the patch so it just looks like a long incision below her left rib cage. Basically the only complications of the Alloderm patch is a possible hernia in that area when Elli gets older since the abdominal wall has been compromised.

Dr. K was by Elli's side during the surgery and didn't even have to change any of the vent settings. He said that Elli did great during the surgery and she had very minimal blood loss. The surgeons decided to remove Elli's abdominal drain but left in the chest tube. So far her gases have looked pretty good and they still haven't had to adjust any vent settings...GO Elli!

Elli is still pretty sedated, considering that the doctors gave her enough paralytic drugs to knock down a horse. She did open her eyes just a little bit tonight when the nurse and I were repositioning her. She is finally able to tolerate lying on her side without her saturations plummeting. She looked pretty comfy not lying on her back. Hopefully the nurses will be able to change her positions more often so some of the edema in her head will start to work it's way out. She has a pretty bad flat spot on the back of her head from lying on her back since her surgery on Sunday. Other than that we are pretty much just hanging out, hopefully the next couple days will be pretty slow, letting Elli rest and recover, and then we can work on weaning down the vent settings. The nurses did start some Nystatin powder for Elli's "double chin" since it was getting a little most from her neck and upper chest being swollen.

Well it's almost midnight, hopefully her blood gas will look good, so far she has been pretty quiet but woke up for just a bit, but seemed pretty agitated so now she is getting some happy meds to help her rest.

Thank you to everyone that has been following the blog not only today but Elli's ongoing journey. It seems like yesterday and yet a life time ago that I had Elli. Brian and I are just so in awe of how strong Elli is, this tiny baby enduring her 4th surgery in 2 weeks. She is such a blessing to Brian and I and has been an inspiration to both of us. She continues to amaze us daily with her strong will and fight. Thanks again for all the support...Brian, Cassi and Elli

OUt of Surgery

2008-09-03T14:23:00.000-07:00

Just got a call from Dr. K and she is out of surgery, came out with the Aloderm patch and seems to be doing well just have to wait until she starts coming off the medication. We will be able to see her in about 45 min.

Surgery Update

2008-09-03T13:39:00.001-07:00

Well Elli is in surgery...finally. We got pushed back because there was an emergency appendectomy. So as of about 3:30 Elli should be nicely sedated and the surgery starting. The surgeon said that he is going to put in an Alloderm patch (made of donor skin) and hopefully there should be minimal complications. Dr. K said that he is going to be there when Elli has her surgery since she is on the HFOV and because he wants to watch her oxygenation very closely. The surgery should likely take about an hour, and then a half hour or so to get Elli stabilized and cleaned up. Praying all goes well and Elli will be one step closer in her recovery. Will post an update when we find out how it went.

Getting the Kinks worked Out

2008-09-03T08:10:00.000-07:00

Just a quick update...Elli is doing pretty darn good. The steriods that they gave her seem to be kicking in and helping with the inflammation/oxygenation. The nurses and doctors have weaned her Delta P down to 30, so she is ventilating well. Her gases have looked pretty good throughout the night and she seems to be getting more stable as they try different things. The respiratory therapist also turned down her MAP (mean airway pressure) the amount of pressure that is delivered with each tiny burst of air to between 14-15. As of now her Nitric Oxide is still going and her oxygen is still turned up to about 100%, but her saturations have seemed much better throughout the night and this morning, we even saw them hit 98% for a split second. Since her oxygenation is so much better when she is calm and sleeping, the doctors decided to go up on her sedation. They turned to Morphine and Versed up last night, but it didn't really work. The night nurse ended up giving Elli 5 doses of PRN meds, so this morning they cranked them up again, but clearly our little Miss does not want to be sleeping. Daddy is currently sitting by her trying to get her to close her little eyes, but she is resisting. She was doing the same thing last night when we were trying to leave. Since Elli has been so much more stable through the night and this morning the doctors and surgeons think that is in Elli's best interest to get rid of the silo. The plan is to clean out any old blood or yucky drainage and put in a patch to allow room for the remaining intestines in the abdomen. Hopefully this will decrease the risk of infection and help Elli in general. So I guess the plan is to to have surgery this afternoon at 1:00 to close with a patch. Will post more when we know more.

Fine Tuning

2008-09-02T15:56:00.000-07:00

We are getting into the bad habit of staying with Elli until the wee hours of the morning. Last night we stayed until almost 3. Elli has been pretty up and down. She is either oxygenating or ventilating but not both for some reason. Her gases have looked pretty much the same, not horrible but not great.

This morning Brian and I went to the Community Blood Center here in Kansas City so Brian could give blood. He has been wanting to do this for the last week or so since Elli has been relying so much on blood he wanted to give back ( I am not able to give for another 4 weeks, but plan to then).

The Doctors decided that Elli needed to have her Nitric Oxide turned up to 20 because she was not oxygenating well. Dr. K thinks that her pulmonary hypertension is back. This is due to the fact that during development, her lungs did not form correctly. Because she has only one "true" lung, the amount of blood flow that normally goes to both lung is forced into the right and very tiny left lung. It is basically like trying to fit 20 gallons of water into a 10 gallon tank. The other reason Dr. K thinks that Elli might not be oxygenating as well is that she is having an inflammatory response to the amount of blood that is collecting in her chest. This causes increased release of white blood cells from the bone marrow that are trying to restore harmony in her body (since there was intestines in the space, the body wants to fill it with something, and it happens to be blood). They are hoping by tweaking the vent settings, keeping Elli calm (aka sedated) and by starting steroids that they will be able to reduce some of the hypertension and allow her lungs to relax a little more thus enabling her to have better oxygen exchange.

We are really hoping that they figure out what Elli likes because this afternoon her oxygen saturation ( the percent of red blood cells carrying oxygen) was down to 82% and hung out there for almost an hour (no.. we were not breathing during this time) Finally they adjusted the vent a little and her saturations have slowly came back up as high as 92% but they are hanging out around 89-90%, but Dr. K seems to be thinking that it is acceptable according to her blood gases. As far as her ventilation goes, her CO2 levels have been looking good, as well as her blood pH, blood pressure and urine output (all good signs).

Shoot.. one of resident pediatricians just came in and told us a little bit of news we didn't want to hear. The surgeons and Dr. K had been discussing the possibility of having surgery tomorrow to reduce Elli's slio and either close the abdominal muscle or put in a patch that goes on the skin to give a little more room for abdominal expansion. Honestly Brian and I don't think that Elli is ready for another surgery so soon considering that she really hasn't stabilized from coming off ECMO, we thought that Dr. K was on the same page, but I guess now they are going to do an "exploratory" surgery tomorrow around 1 ( don't hold your breath, I would be surprised if it even gets done tomorrow before 5). Either way the surgery team wants to go in and evaluate the silo, possibly irrigate some of the blood out of the abdomen and decide what the next step should be. We are hoping that if anything they use a patch to allow for more room in the abdomen and after Elli grows a little more, gets more stable, and her lungs have time to adjust to the workload, that they can go back in and do the final closure. The resident pediatrician said that they were going to do it in the OR, but hopefully they will be able to do the "exploratory" part here in the surgical suite so they don't have to put Elli through a big move. It's just hard to believe that they think Elli is ready for yet another surgery, sedation, and possibly the risk of more bleeding. It is all so scary, we just wish that she could have more time to rest between these huge procedures on such a little baby.

As far as tests today, Elli had another chest x-ray, which Dr. K thought actually looked better than yesterday. They have determined that the clouded area on the upper lobe of her right lung is just a shadow from the left-over hematoma from the ECMO cannulas that were in her neck. Dr. K also thought that both the right and left lung were well expanded, and the left a little more than before. Also she had another ECHO of her heart, and the results were about the same as they had been on the previous. The ECHO showed a slightly smaller left ventricle (the part of the heart that pumps blood to the body) and a higher pressure in her right ventricle (the part of the heart that pumps de-oxygenated blood to the lungs where it is supposed to pick up oxygen to take to the rest of the body) Well that is where the pulmonary hypertension is coming from. So really nothing new with the heart that we didn't already know. In other news, the blood culture from Elli's arterial line in her foot didn't grow any real type of bacteria. It grew out a little something, but if she were in "normal world" they would not use antibiotics on it, it would resolve on it's own. Since Elli has had so many surgeries and has so many lines she will continue the current course of antibiotics for about another week.

Ok this post is getting longer and longer, but Dr. K just came back in to talk to us once again. The surgery is not definite for tomorrow, he will have to okay it first depending on what kind of night and morning Elli has and let us know that they will be able to do the surgery right where she is. Dr. K even said "they do open heart surgeries in this room, they should be able to do this little procedure" I don't really think he wants her moved, and neither do we. On that note, we are going to be so bummed when Dr. K leaves. He was scheduled to be the Attending neonatologist until last Friday or Saturday but decided to stay until Thursday (since he thinks Elli is such a fighter, he wants to see her get stable). Seriously I must stop typing now...If more news comes up, I will put it in another post.

Delta P?

2008-09-01T19:39:00.000-07:00

Daddy's 1st Diaper Change...a little rocky, but went well none the less.

Kisses for Elli after the big Diaper Change.

Elli spent about 30 minutes this afternoon just looking around, she seemed pretty happy but...

...clearly she didn't like something. How can such a sour face look so darn cute?

Elli looking at her Mommy, thinking why wont this lady just pick me up already.

What the heck is Delta P? Brian and I have gotten very acquainted with Mr. Delta P. It is a HFOV setting that seems to determine what kind of gas Elli is going to have. (The Delta P is the amount of pressure behind each burst of air put into Elli's lungs) Currently Elli is receiving 600 tiny bursts of air each minute. No that is not a typing error, I said 600! Miss Elli has decided that she likes the Delta P at 40. Try and turn her down to 38 or 39 and her CO2 starts going up, and she starts really breathing over the vent, I guess she is just trying out her new diaphragm. The doctors really want to wean Elli every time she has a good blood gas but once they turn the Delta P down, she gets cranky and her CO2 is on the rise. The reason that they want to wean the vent settings, and won't just let her sit tight at a level she likes is that the HFOV tends to beat up the lungs. They want to least amount of pressure that Elli will tolerate with her numbers still staying in the acceptable range, so hence the constant trials to wean. As for right now, they are leaving the Delta P at 40 for a while, it has been there since around 6:00, so we hope that they let her adjust to it for a while. As far as everything else goes, Elli looks great on paper, her blood pressure has not had any issues since her blood volume has gotten back to where it needs to be and she is still peeing like crazy. Shoot, one of Elli's midline IV's just got pulled out, it was clotted off, so I don't know if they are going to try and start another one or what. And now I just heard that that her scalp IV that she is currently getting Vancomycin through is all red, so it's probably bad too. Darn it Elli, sounds like a few more pokes to come. The nurses have been giving Elli several PRN doses of Morphine and Versed to try to keep Elli from breathing over her vent, so I am wondering if they will end up turning up the drip rates pretty soon, but haven't heard any word of that yet.

Still back in the surgical suite all by ourselves. They had talked about moving Elli back into the ECMO room, but she is not stable enough yet, but hopefully she will begin to stabilize over the next several days. So as of now the plan is to keep Elli happy. With any luck she will be able to very, very slowly tolerate some lower Delta P numbers without her gases looking too bad.

One more thing, Brian and I put the hit counter on around this time last week and it is unbelievable, over 12,000 hits! That is amazing, we cannot believe that so many people are checking in on Elli. It is so refreshing to know that a baby that hardly anyone has got to meet can have such a great impact on others. She is truly a fighter and I hope that everyone continues to watch her progress, because we are all going to make it through this crazy journey. And everyone that has posted thoughtful comments, it has been a true help to Brian and I. These last few days have been so crazy, but it is nice to be able to sit down at the computer, pour out thoughts and know that there are so many people that truly care about all three of us. Thanks again, hopefully the next several posts will be filled with cute pictures and good news. Thanks again. Hope and Love....Brian, Cassi and Elli

Rocky Road

2008-09-01T13:18:00.001-07:00

We knew going into this that it was going to be an emotional roller coaster, but really we had no idea. Yesterday went from super low to pretty high. And today has been highs and lows each hour. Apparently Elli knew that we left last night because soon after we did, her gases started looking worse, the changed some vent settings and gave her some PRN morphine and versed, trying to keep her calm so that she was able to let the HFOV (high frequency oscillating vent) help blow off the CO2.

I called early this morning around 5 and she was doing okay, not great, but they were tweaking her settings a little hoping that it would help. Brian and I got to the NICU late this morning considering we didn't leave until around 2:30 last night and then had to have our nightly chat when we got back to RMH, so incidentally we slept in until almost 10:00 (luckily I hadn't pumped for 4 hours, so our alarm clock was a wet T-shirt if you know what I mean). Anyways when we got here, Elli wasn't doing the greatest. Her HFOV had been turned up, and so had her O2 flow it had been at 40% when we left last night and they had it turned up to 59%. Her blood gases were looking worse and worse, and I was freaking out. Dot our nurse for yesterday and today said that it all started going a little down hill since they came in and did an ultrasound of Elli's abdomen. They were looking at the liver to see if any of the swelling had gone down and looking for any possible active bleeds. The ultrasound isn't 100% back yet, but it doesn't appear that she has any active bleeds, because her Hemoglobin and Hematacrit have been excellent and her blood pressure is also holding stable without any extra blood or boluses (thank goodness, her little head is so edemetous just to rest your hand on it for even a few minutes, your fingers leave an indention).

Anyways, back to the ultrasound, when the ultrasound tech was doing it, she was pressing on Elli's abdomen making her very mad, also soon after she left Dot noticed a very large amount of blood in Elli's chest tube and on her bed (equivalent to almost 50 mL's). At this time Elli started destating (her blood oxygen level started to drop) and was down in the low 80's, so Dot turned her O2 up to 80% which helped a little, but only brought it up to the upper 80's low 90's. This is odd because typically Elli has not had a problem with oxygenation, it is with ventilation (CO2 removal). So of course she once again had the doctors scratching their heads. They did a chest x-ray to make sure that the pressure on her stomach from the ultrasound hadn't disrupted anything and to make sure that her lung wasn't collapsing or anything. The x-ray looked pretty good, Dr. A actually said that it looked a little better than last night, but the questionable area in the Right upper lobe is still there. They are thinking probably pneumonia or a small amount of collapsed area. Either way like I said last night the HFOV helps with both and she already has antibiotics on board that would cover the pneumonia. Also last night they did a blood culture of her arterial line (measures internal blood pressure and it is where they draw all of her blood from) and it was positive, so once again the antibiotics that she is currently on should cover any type of infections that are brewing.

Either way they have tweaked her vent settings and given her a round of PRN Morphine and Versed to help keep her from trying to breath over the vent, and it seems to be helping. Her last set of blood gases were all in the normal range, so of course when they look that good they have to decrease the vent settings just a little bit to make sure that she is still having to do a little bit, and not getting lazy on us. Currently her oxygen saturations look pretty good mid 90's and she is on 63% oxygen. Dot is going to get another set of blood gases at 4 to make sure that they didn't turn things down too much and that she is tolerating everything well. Either way I feel like I am living one blood gas to the next. Hopefully everything will get settled down pretty soon, but as of right now Elli is still extremely critical. Brian and I have pretty much been sitting by her bed talking to her and holding her hand since her surgery. She is one tough cookie, I actually wish that I was as strong as her. More of the Elli drama to come soon and some new pics (daddy changed his first diaper..Yeah!!)

She Likes It

2008-08-31T21:42:00.000-07:00

Right before shift change the nurses got a set of blood gases on Elli and her CO2 was back up to 74 so on the oscillating vent she went. Dr. P who has basically been in Elli's room all day pacing back and forth (especially those first few hours after she came off ECMO) discussed these most recent blood gases with the Neonatologist that was in house Dr. T and he decided that it would be best for Elli to go on the oscillating vent. Of course we had to leave for shift change and so when we got back they had done another set of gases that were only slightly improved, but as of 10:00 Elli's gases were PERFECT! What a little champ, she really likes the oscillating vent. Her color looks so much better and her blood pressure is finally up where it was before she came off ECMO. Also, it looks like her bleeding around the silo has pretty much stopped. There does not appear to be any new oozing from that area or around the abdominal tube (there had been a steady trickle from it earlier this afternoon). Apparently the Heparin is finally getting out of her system, and she is peeing like a champ which also helps to excrete the Heparin. So all things considered from this afternoon, Elli is pretty stable. Dr. P even turned down her vent settings at 11:00 and is going to get a blood gas at midnight to see how well she tolerates it. We are planning on staying at the hospital until that gas gets back, then we might go get some shut eye. Elli did wake up just for a few minutes this evening when she had a chest x-ray taken. Dr. P wanted to see what Elli's lungs were looking like. He showed Brian and I the x-ray and it looked pretty good. Her right lung looks well inflated with a questionable small area at the very top that looks like it might be a) collapsed b) pneumonia 3) hematoma area where the ECMO cannulas came out. He is going to keep a close eye on it over the next few days, but if it is pneumonia, Elli is on antibiotics. If it is a collapsed area the "jet" from the oscillating vent will "knock it out" so to speak. And a hematoma will resolve itself, so pretty much all bases are covered whatever the reason might be. Dr. P also seems to think that the little left lung "nubbin" looks like it is inflated. He showed us on the chest x-ray but it was pretty hard to see and you really had to squint. I guess any lung tissue on the left side is better than nothing and it wont hurt if it is helping the right lung out. I guess that's about it for tonight. Hopefully all will be well in the morning. I am sure that I am going to have to call at 2 and 5 when I pump just to make sure she is still doing okay. It's almost midnight now, waiting for the gases then off to the RMH. Thank you to everyone that has been checking the blog and leaving comments. I think that today was even more stressful then the day Elli had surgery. She is defiantly giving mommy and daddy some grey hairs, but they will be worth it when we get to take her home.

Off ECMO

2008-08-31T15:55:00.000-07:00

As of about 2:00 this afternoon, Elli has been off ECMO. Because of the increased bleeding from around her silo, the doctors were forced to speed up the weaning process, and the surgeons were called to decannulate at 1:30. It was a few rocky hours after coming off, her blood pressure dropped very low 30's/20's. The nurses had to give 2 normal saline boluses to try to keep Elli's pressures up while they waited for blood from the blood bank. Elli has gotten 2 blood transfusions and a unit of platelets since the surgery and her blood pressure is just now leveling out. It is not as high as it was before surgery but it should improve once her blood volume is back to where it needs to be.

As far as how well she has been doing oxygenating and ventilating, the oxygenation part is going well but the ventilation (blowing off carbon dioxide) is improving. Elli's blood gases have been pretty good, and are getting better. The last CO2 level was 65 down from 89 (normal range is 35-45) so they changed around the vent settings a little bit, and now are holding them where they are. Currently Elli is still on the conventional vent with nitric oxide, but the daunting "jet" vent has been pulled into the room in case it is needed. As for now, if her CO2 levels continue to decline, she will probably get to stay on the conventional vent. Elli is still pretty knocked out because of the amount of Fentnyl (pain med) that they gave her during her surgery, apparently little Elli didn't want to fall asleep for the procedure and they had to give her a couple extra doses to get her to cooperate. The nurse did end up having to put another IV in Elli's head because the surgeons were unable to place a Hickman central line during the decannulation, so we are still left with the midline placed earlier today and now a scalp IV. Super Brian (who got the midline earlier) is now attempting to put in a PICC line. X-Ray is here to verify placement, so hopefully it is in the correct spot. I guess that's all for now, will post later if there are any changes. We are praying for a quiet night, and that Elli will continue to prove how strong she is.

We're Weaning

2008-08-31T08:35:00.000-07:00

Got to the hospital this morning and they had already started weaning Elli off ECMO. They restarted the Nitric Oxide and have turned up her vent settings. The ECMO flow is now down to 150 and her blood gases have looks great so far. They are going to turn it down to 100-120 at 11:00 and will continue to do blood gases every hour. The plan is to have Elli completely off ECMO today and the surgeons are even going to take the cannulas out of her neck. The reason that they are sort of speeding up the process is that Elli has been bleeding a little bit more, her chest tube is still having a fair amount of drainage, and now she is oozing blood around her silo. The nurse today said that the surgeons came in this morning before we got here and repositioned her silo because it was coming out on one side. Hopefully that was causing the bleeding and it will slow down. Once Elli is off ECMO and the Heparin clears her system, her blood will be able to clot, slowing the bleeding even more.

Elli just got a midline placed, since she didn't have any IV sites besides her ECMO cannulas, it was imperative that they find some sort of access. One of the male nurses, Brian, got access on the first try. That was very refreshing. Seeing her little hand get poked should have been no big deal, but as of today, we had really only seen Elli poked with a needle the day before she went on ECMO. The doctors have also decided to restart Elli's antibiotics for prophylactic reasons. Other than that we are just waiting and praying that this is an easy transition. Will keep everyone posted on her progress.

Pleasantly Surprised

2008-08-30T20:11:00.000-07:00

Elli after surgery with her Silo, it's all wrapped up with gauze, but inside the plastic bag holds her stomach, small and large intestines and part of her spleen. The bag is sewn into her abdomen and when it is time, the surgeons will reduce or put the intestines back into her abdomen a little at a time. Elli doesn't seem to mind the new placement of her stomach, and actually her heart loves it!

Elli has been so stable it's almost scary. The doctors continue to be pleasantly surprised whenever they talk about Elli and how well she has done since her surgery. We have been holding our breath waiting for something to change...and well something did. Not major but Elli's chest tube has been putting out a little more drainage that it had been. 10ml/hr for the last 2 hours as of 10pm. Dr. H the on call doc for tonight thinks it might just be a positional thing because the nurses have Elli lying slightly to the left side, so it might have been a pocket of blood that is just now getting a chance to drain. Either way they are keeping a close eye on it and replacing the volume out with packed red blood cells.

In other news, the ECHO came back good, structurally Elli's heart is perfectly normal, other than it being slightly smaller that other babies her size. Dr. K said that now that we know it is structurally fine, it just has to prove that it can do the work it needs to do. And I guess we will be finding that out tomorrow. Yes that is right, Elli is going to start being weaned off ECMO TOMORROW!! Every morning they do an oxygen challenge on Elli and this morning she did awesome, her blood gases have looked great all day and they have the ECMO pump turned down to 300, and have had it there for most of the day and Elli hasn't been able to tell any difference. Her blood pressure continues to be stable and is a perfect 60/40 right now. The plan for tomorrow is to slowly turn down the ECMO machine while turning up the vent every hour and doing blood gases to ensure that Elli is tolerating it well. This was the plan this morning even before the chest tube started putting out a bit more than before. Dr. H said that if her chest tube starts to put out more blood volume than can be replaced (not the case now) than they will have to start the weaning process earlier and do it quicker. Dr. H also said that from how Elli has responded today and how well she did with her oxygen challenge, that she thinks that the weaning should go well tomorrow, but there is always the chance that Elli will have to go back on the "jet vent", nitric oxide, or other means to keep her airways open. We are still running the risk of pulmonary hypertension, which would be the reason to have the different vent. Hopefully everything will go smoothly and Elli will be able to tolerate being off ECMO with the conventional ventilator but we'll see tomorrow.

So tomorrow is going to be another HUGE step for Elli. Basically we are going to find out if her heart and lungs are able to support her, and we thought the surgery was scary! We will be posting more often tomorrow, I got a little lazy today considering it was so quiet down here in the ECMO room with no other babies around.

In other news, Brian and I did sneak away for a little while this afternoon and went and ate lunch at Famous Dave's and then went to Nebraska Furniture Mart. Since we are sort-of in the process of moving, we decided to get new living room furniture. We got a sectional, recliner, dishwasher and a stove. It was funny though, we spent a little while picking out the sectional and recliner, but by the time we made it to the appliances, we were ready to be done to get back to see Elli so we chose them in about 10 minutes. It's funny how much we miss her when we are away, and it was only for 3 hours! Either way we did the no financing for 30 months and all the items are going to be delivered to our new house the middle of September. It will be so nice to bring Elli home to a completely remodeled house with new furniture and appliances.

Mom's on Diaper Duty already. The nurse asked us both if we wanted to help change Elli's diaper, and Brian quickly said "I'll run the camera, you can do the diaper" Elli didn't mind a bit, but it was a little tricky with the silo, chest tube, abdominal tube, the cardiac lead wires and the temperature probe all to deal with, but I think it went pretty smooth.

In still other news, our first ECMO roommate Meghan, is doing very well, she has been extubated for a couple days now, has no more IV's and is drinking mamma's milk. She is doing so great and should be heading home relatively soon. Also, my friend Heather from St. Francis Hospital recently had her baby boy by c-section, he weighed over 9 pounds and was 23 inches long. So a big Congrats to the Archer family. And Brian just found out the the Koger family is back in the hospital with Wyatt, please keep their family in your thoughts and prayers as well, as he reherniated and had to have surgery this evening. He came out of the surgery with a super fancy patch (made of his other patches, Gortex, Alloderm and wire) and the plan is to extubate him tomorrow. There is a link from our page to his if you want to check up on him tomorrow. Well it's getting pretty late. Going to give Elli some kisses and then head back to RMH to try to get some sleep in anticipation for the weaning tomorrow. Thanks to all who have been so positive through our entire journey, the comments keep us positive as well. Thanks again! Brian, Cassi and Elli

Before...and After

2008-08-29T20:12:00.000-07:00

Elli's before and after x-rays. The After is on the Left side and the Before is on the Right side.

We finally got to look at some of Elli's x-rays today and I got the opportunity to take get a before and after picture. In the before picture, the cloud looking stuff on the Left side of Elli's chest is stomach and bowel. We found out from the surgeon that Elli's defect was so extensive that she was missing all of her posterior diaphragm, and the entire left side and had only a very small ridge anterior. They used an Alloderm patch and sewed it into the muscles of the chest wall and to the very small area of diaphragm on the front side of her chest. With this extensive of a defect we knew that the liver was "up" but didn't know to what extent. 2/3 of Elli's liver was in her chest cavity and actually went past midline and was behind her heart pushing on it during her development. This was much more that originally thought. Since the liver was so contorted, the inferior vena cave (large artery that supplies blood to the lower extremities) had been twisted, a possible reason for the low blood pressures. Now that the liver is back down where it should be, the doctors were concerned that there was restricted flow to the lower part of the body, and by an ultrasound of the liver yesterday, it showed decreased but adequate blood flow. Since the liver was in such an contorted angle, they believe that it had been getting congested causing it to become swollen. Because the blood flow from the spleen travels through the liver on it's way back to the heart, the spleen also had blood flow restrictions causing it to become swollen also. This is the main reason why Elli has a silo. Her liver was so large and swollen that it was the only organ that would fit back into the abdomen. So far Elli's profusion to the lower extremities looks good and all her liver enzymes and studies look normal. The nurse today told us that on paper Elli looks "textbook" and all her numbers look awesome.

Also by the chest x-rays, in the before picture, Elli's heart is very much on the right side of her chest and on the after, it is already making it's move towards midline. It should be pretty much under the sternum with the ventricles angling to the left side. The right lung in the After picture is becoming more inflated in each x-ray and the doctors are pleasantly surprised by it's size. The light shadowy looking area on the left chest in the after picture is fluid, NOT lung. This is not uncommon, the doctors expect the body to fill in that space with something, and as long as it is not blood, they are happy. Just to clarify even the very dark dot on that picture is NOT lung. The lung "nubbin" was very hard to see, even when the nurse pointed it out to us. It is a very light area near the Left clavicle. The doctors also noticed on the chest x-ray the size of the heart overall. Dr. K is concerned that Elli's heart is on the small size because of the amount of liver that was compressing it. Basically the right lobe of the liver slid up through the defect and around behind the heart causing it to become compressed. This may also be part of the reason for the low blood pressures. Each time the left ventricle would try fill, it was only able to expand to a certain point because of where the liver had been developing. The doctors are concerned that the left ventricle may also be on the smaller side, so they did an extensive ECHO of the heart today, but we don't have any results yet. Humm...is everyone overwhelmed with medical jargon? Sorry, some of this is repetitive, but I just wanted to try to get it all explained since I only touched on bits and pieces of it in earlier posts.

As far as the Silo goes, Elli will probably have it for quite a while. It will take some time for the liver and spleen to reduce in size and Elli will need to continue to grow to make more room in her abdomen for all of them to fit back in. Elli has had an awesome day, she is peeing like a champ, which shows great profusion to the kidneys. Elli is still showing no signs of bleeding. Her vital signs and blood gases have looked great all day. She didn't even get any blood this afternoon, only platelets. Basically Elli has not gotten any more blood products that she had been receiving before surgery. ECMO babies tend to "use up" blood and the machine tends to "eat up" the platelets. Some babies require blood and/or platelets every 6 hours but Elli has been on the trend to get blood and platelets once a day, and usually at different times.

Elli was awake off and on a couple times today. She was all bright eyed when Dr. K came to speak to us this afternoon. She was awake and looking around without being uncomfortable or agitated. She has not been cutting out the pump at all and her blood pressure has remained awesome. Currently it is 62/43 with a mean of 49...Way to go Elli! The doctors are still shaking their heads at our little lady. But Dr. K did make a good point this afternoon. He said that each of these CDH babies write their own book and it is his job to use his experiences to read what they are writing not use his experiences to try to guide them. That seems exactly what they have been doing with Elli, she writes a new page everyday, the doctors read it and decide what actions to take by what she dictates. We have been so impressed with the doctors here at CMH, they have been so great with Elli and trying to figure out what this little lady needs.

Brian and I are looking forward to a boring weekend of staying stable. We are hoping that Elli continues to look as good as she does. The doctors warned that after surgery, there are a lot of fluid shifts and the fluid tends to seep out of her cells and into her tissues causing her to get very puffy. Because this happens they are forced to give fluids to replace the shift, causing even more edema, which is a vicious cycle. So far Elli has had no extra edema other than her head. Her poor little head, the back of it looks like a little block, but as far as her entire body, she looks great.

Ok this post is getting excessively long, but I think think that I have all the details hashed out. Well it's after eleven, I think that Brian and I are going to stay until around midnight and then call it a day. It has been such a refreshing and uplifting day, which I think both Brian and I needed. I was saying last night that I felt like I was more tired than the night that I had Elli. I guess that we were just both getting worn down. Brian is now humming a little tune to Elli standing next to her bed, and it is so cute! He is such a proud Papa! Guess that's it for tonight. Let us know if you have any questions or just don't understand any of it. Thanks again for all the continued support, thoughts and prayers...I am pretty sure they worked yesterday. Now we are moving onto other prayers ~ lung growth and function, decreased liver swelling, and good reports from the ECHO and so on and so forth. Gosh Elli sure does ask for a lot, but her dad and I know she's worth it! Cant wait to hear more good/unexpected news! Take care...good night. Brian, Cassi and Elli

What Rules?

2008-08-29T09:24:00.000-07:00

Well, clearly Elli once again did not read the book on surgery on ECMO. Elli does not follow the rules but in a good way. She was incredibly stable through the entire night and still is doing well this morning. Elli has had minimal bleeding out of her JP drains and her vital signs are continuing to amaze us. We were worried that with all the fluid shifts from surgery that she would start to look really swollen, especially in her head, but so far not too much difference from before the surgery so that is a pleasant surprise. This morning they turned down the ECMO flow to 360, they had turned it up to 420 during the surgery to ensure that she would be as stable as possible. They also changed some of the vent settings this morning, but not exactly sure which ones. We missed rounds this morning because we slept in a little bit since Elli is doing so amazing and since we stayed at her bedside until after 2 am! We are now waiting for Dr. P to come around to visit with us and let us know any changes and what the overall game plan is going to be. As far as the surgical team goes, they said that they won't try to reduce her silo (putting her intestines back in her belly a little at a time) until she has been weaned off ECMO.

Brian and I are so blown away by how well Elli is doing, we were prepared for a long, tough night, but Elli proved us wrong. We actually had a couple of tears of joy this morning when we heard how amazing she had done throughout the night and this morning, it is still a long bumpy road, but Elli is doing exactly what she needs to do. She is resting up now, but a little bit responsive. Dr. T had the nurses turn her Morphine up to 60 last night as a precautionary measure to ensure that she would be nice and quiet through the night and not be kicking around. So as of now we are still playing the waiting game. Will post later any new news or updates.

Surgery Update #2

2008-08-28T20:42:00.000-07:00

Just thought that I would give everyone some more details on how the surgery went. As you can tell, Elli has a silo. It is pretty overwhelming to see at first, so we will post some pictures of that at a later date. Elli didn't have too much bleeding and is actually doing very well and has stabilized out, hopefully for the rest of the night. Her blood gases looked a little on the acidic side so they are giving her a normal saline bolus now, but her hemoglobin and hematacrit are looking good so far indicating that she is not actively bleeding anywhere. Her two drains, one in her left chest and one in her abdomen, are draining some blood but not too much so far. As far as lung tissue goes, unfortunately Elli basically has no left lung. The lung tissue that is there is very, very small also called a "nubbin" by the surgeon. So basically all oxygenation will have to be done by the right lung, which by the most recent chest x-ray after surgery, looks pretty good. Dr A. actually is very pleased with the size and said that in some cases, the right lung will grow to try to compensate for the lack of left lung. I guess this is the silver lining in this whole ordeal. The true test of it's functionability will be when the doctors start to wean her off the ECMO machine (24-48 hours from now) as long as Elli doesn't develop any bleeding issues. So basically we are back to the waiting game. As for right now Elli looks very stable, her blood pressure looks great as do the rest of her vital signs. The nurses are going to draw blood gases again at 1 to make sure that it was a fluid issue and not an oxygenation issue. So as of right she is stable and doing as well if not better than expected. Will post how she is doing in the morning. Thank you all so much for the continued support, just knowing that everyone was thinking of Elli and us was awesome. All the comments really made us feel so blessed that we have such a strong support system. Thanks again Brian, Cassi and Elli

Surgery Update

2008-08-28T18:03:00.000-07:00

Elli made it through her surgery which lasted about 2 hours. The defect was very large as we knew it would be. They used a Alloderm patch to do the repair, and because of the amount of liver that had been in the chest, the surgeons had to create a silo to put Elli's stomach, intestines, and part of her spleen in. She looks pretty stable for now, will post more indepth later..going to see Elli now.

On the Move ~Videos

2008-08-28T14:54:00.000-07:00

Brian took this video this morning while we were waiting for Elli to go to surgery.

It took a couple respiratory therapists and 3 nurses to move Elli literally 20 feet to the operating table. They had to make sure that none of her lines got kinked or crossed. Brian and I held our breath the whole time. We were so glad she didn't have to go to an actual OR.

Moving little Elli onto the operating table...more nervous mom moments.

It's started

2008-08-28T14:31:00.000-07:00

Elli stretching out before her surgery, that girl's got some long legs!

All cozy on the surgery table after they but a BearHugger under her and warm blankets on top. After they moved her she was pretty cranky, but once those warm blankets hit her she was right back to sleep and looked so comfy cozy.

Elli in her "New Room" ~ the surgery suite. She will be staying in this room for a couple of days so the nurses won't have to move her to increase the risk of bleeding.

All ready for surgery....just waiting on the surgeons.

We stopped by to see if Elli had started her surgery, and at about 4:00 the anesthesiologist and surgeon walked in...we gave Elli our final kisses, told her how much we loved her, and said one last prayer. So as of now, 4:32 she should be well on her way to a repair. Brian and I are waiting in one of the Parent rooms that they use before babies get discharged. The parents stay the night with the kiddo and do all the cares to ensure the parents know what to expect when they are at home with their baby. It has a bed and a TV so Brian is resting on the bed and watching TV, just waiting for the surgeons to come in and let us know how our little lady did.

Playing the Waiting Game

2008-08-28T13:22:00.000-07:00

So Elli has not started her surgery as of 3:25. She is in the room and everything is ready, just waiting on the surgeons to show up. I'm going to pump, will post when she goes, and we have some cute pictures and a video when I get back.

Game On

2008-08-28T09:26:00.000-07:00

We have the green light, Elli will be having her surgery sometime after lunch, the plan between 1 and 2, there is a baby in the surgery suite right now, but he will be moved out and Elli will be moved in so she can get settled and stabilized on the OR table for about an hour before her surgery. She is going to get to stay in the surgery suite for a couple of days pending there are no emergency cases that need the room. This is a big relief to Mommy and Daddy since she will be so critical after surgery and any movement will increase the chance of bleeding. After much debate this morning, the doctors and nurses decided that they would wait until after Elli's surgery to put in a central line. As of right now Elli only has her ECMO cannulas and one small IV in her foot. When it is time to wean her off ECMO, all her meds will have to find another way and since the IV in her foot is so small, and also TPN (kind of like her food for now) cannot be given through a peripheral IV, she needs to have a central line placed. We were hoping that they would do it before surgery since afterwards, I don't want her to get worked up, but I guess the decided that they didn't want to do it while she was on so much Heparin.

As for last night, I called and talked to Elli's nurses around 2 after I got done pumping and Elli had to have her ECMO flow turned back up slightly. Her blood pressures were staying fine, it was her blood gases that didn't look as good as they were with the higher amount of support. Last night her gases were slightly acidotic meaning that she wasn't able to blow off enough CO2. The reason for this is that because Elli's vent settings are so low because they don't want to expand that right lung too much which would cause the heart to be compressed, her lungs were not doing enough of the work to get rid of the extra carbon dioxide. Dr. P did not seem to concerned with this since none of the vent settings were changed, he wouldn't expect her to be able to do the oxygen/carbon dioxide conversion herself. So we didn't really take it as a set back, more of a trial run before surgery.

Elli has been really sleepy all morning, even when they turned her at 8:00, she didn't even wake up, which usually makes her pretty cranky. The nurses have not given her any PRN meds since they changed her cannula site on Tuesday. I guess she is just getting her rest for the big afternoon. I hope that she wakes up just a little bit before the surgery so I can get one last peek at those beautiful blues before surgery. Don't worry we will keep posting throughout the day with updates on Elli! Thanks to everyone for the comments, it was so awesome to see how many people posted when we got to the hospital this morning. Check back later..... Brian, Cassi and Elli

Finally...Daddy's got a job

2008-08-27T15:47:00.000-07:00

Since Elli has been sucking on her ET tube so much over the past few days, our day nurse decided that she might like to try a pacifier. The results are pretty evident.

This didn't really come to a surprise to Brian or I because Elli was constantly sucking her thumb in the ultrasounds, and I will admit; I too was a thumb sucker...for longer than I would like to say.

The only thing is, that with the ET tube, someone has to hold the pacifier in Elli's mouth because she can't get suction on it with everything else that is in her mouth. That is where Daddy comes in, he is now the OBH ~ Official Binki Holder!

The doctors made rounds this afternoon around 4 and the plan for Elli is to have her surgery around 1 tomorrow. Hopefully she will be able to have her surgery in the adjoining surgery suite, that is still up for debate since another kiddo may be returning to it after his surgery. Also they turned Elli's ECMO pump down more this afternoon too! It is now down to 300! Way to go Elli. Even the doctor that didn't give us much hope that first morning that Elli went on ECMO said that he is seeing some really positive things from this little lady and she is really holding her own. He said that he has renewed hope in her outcome, so coming from him, that is pretty amazing...but of course her mamma already knew she was resilient. The surgeon did say that Elli may come back from surgery with a silo. A silo is a bag that they will use to put in any extra intestines that don't fit back into her little tummy, so that might be an option we'll just have to wait and see.

Overall we are super excited and nervous. I think we have geared ourselves up for the surgery and are ready for Elli to get on with the healing process. We will be keeping everyone posted as soon as we know more news. As for now, we are going to spend a few hours with Elli tonight and try to get back to CMH good time in the morning to spend as much time with Elli before the surgery as possible. Hopefully no more switches in the surgery schedule!

Playing the Waiting Game

2008-08-27T10:46:00.000-07:00

SugarBear watching Elli sleep last night. She was pretty relaxed and stretching out her legs. This was after she got all worked up. They changed the dressing on her neck where the ECMO cannulas enter since they were saturated. Needless to say Elli didn't want any part of it. I can only imagine if she wasn't intubated, she would have woke all the babies in the NICU up with her screams! Her little face was bright red and she had one little crocodile tear roll down her cheek. The dressing looks so much better today, there is hardly any blood on it, so that is good, no more bleeding from the site! It did take a little Elli cocktail of Morphine and Versed, but she finally relaxed and was zonked out for several hours. Poor little baby, thankfully daddy was in the family room talking on the phone so he didn't have to see her upset.

This is Elli contemplating when she will finally get to have her surgery. Humm.......maybe tomorrow? I guess only the surgeons know for sure, wish they would let mom and dad know!

Check out my hair! I finally got it scrubbed down last night by Angel. It is so clean and soft! Maybe they should have left it dirty, mom wont keep her hands off of it!

Elli has really been stretching out her little toes lately, and they sure are long. She has feet just like her daddy, apparently a second toe longer than the big toe means she will be an athlete. Either way they are just too cute, love those little toes!

Elli had a really great night last night. I called around 4 and the nurses said that she was awake a couple of times but never got fussy. Basically it has been a pretty boring 24 hours. Elli's blood pressures have been great, apparently she didn't read the book on CDH and ECMO because she is not following any of the rules, she makes them up as she goes. Always keeping the Doctors and nurses on their toes!

As far as surgery goes, still hoping for tomorrow, but that is still up for debate. The surgeons should know sometime late this afternoon. So until then we are just going to hang out with Elli and let her rest as much as we can. The nurse this morning turned down the ECMO pump. Basically this means that Elli is doing just a little bit of the work, the pump was at 42o and is now down to 360. They might try to turn it down a little more this afternoon depending on her blood gases. If she starts retaining CO2 then they will not be able to turn it down any more, but as for now her oxygen saturations look good and her blood pressure is holding strong. Her mean is 60 right now, and the doctors said they would be satisfied with anything above 40...way to go above and beyond Elli!

We will keep updating with more info as we get it, I guess the longer they put off the surgery the more Elli can prove to the doctors what a strong little fighter she is. Hopefully they will be able to turn the ECMO pump down even more today...love that forward progress. As always I will keep taking pictures and posting them of little Elli ~ seems like every little thing she does is so cute, I just can't help myself. Thanks for all the continued support...we can really feel it!

Surgery Bumped

2008-08-26T11:43:00.000-07:00

Daddy intently watching over Elli, letting her know that she needs to behave herself and keep those blood pressures looking good. Today Elli's blood pressures have been awesome, currently 61/44 with a mean of 49. Way to go Elli ~ you didn't even need that Dopamine.

Picture of Mommy and Daddy taken yesterday in the cafeteria by my friend Kelli.

Elli was awake for several hours yesterday just looking around, but behaving. Even when we were sitting in the chairs next to her little bed, she would wake up and try to peek out at us from under her little light blocker (the pink and brown polka-doted thing aka I call it the square of softness). It's so funny because she can't move her head so she looks at us from the corner of her eyes.

And now....FIRST KISSES!! Up until now Brian and I had not gotten to give Elli even a kiss. Late last night around 12:30 after the nurse changed Elli and did her assessment, Elli was still wide awake. The nurse said that she would take our first family picture, which she did and then she said she would take one of us giving her a little kiss. We were kind of shocked, since we were told that we couldn't really do that before, but of course we wanted to.

I took this picture, you cant really see it but Elli made a funny little face when Brian kissed her forehead, his mustache hairs must have tickled her.

Now Mommy's turn. I cannot believe how soft her little skin was to my lips, makes me want to cover her whole body in kisses, but I resisted. We will try to limit our lip germs to just "goodbye" kisses at night.

~SURGERY BUMPED TO THURSDAY~

Nothing big but the surgery that was tentatively set for Wednesday has now been moved to Thursday. Another baby came in and is going to go ahead of us since Elli is on ECMO and stable we get another day to rest. When we find out the time we will post, so everyone is aware. Again thanks to everyone for following our story, posting (which helps us a lot it is our nightly ritual to check all the posts back at the Ronald McDonald house) and your prayers. They all are appreciated.

Little Stinker

2008-08-26T09:00:00.000-07:00

Last night Brian and I went back to the RMHC during rounds, I pumped and then fell asleep, as did Brian (no, he didn't pump), and by the time we woke up it was after 9! Yikes we had slept for almost 2 hours, apparently we were tired. We headed back to CMH to see Elli and that little stinker ended up being awake the whole evening and we stayed almost until 1 am. Needless to say we slept in this morning. I did call and check on Elli during my nightly pumping ritual and Angel said that Elli was doing good. Her blood pressure was continuing to improve and was actually a little higher than it had been when she was on the Dopamine. During her 4 am assessment Angel said Elli was wide awake, but not fussy or uncomfortable. I think that she went a full 24 hours without any PRN doses of Morphine or Versed. Also when Elli is awake, she had been cutting out the ECMO pump with her wiggle worm nature, but that didn't happen yesterday either.

Haven't been in to see Elli yet this morning, Brian's brother Nathan and his dad came down so Brian and Nathan are visiting with Elli right now, I am hanging out in the waiting area, anxious to see my baby girl. I have some really great pictures of Brian, Elli and I from last night that I will post later, I don't have an outlet out here in the waiting room. Check back later- these are super cute!

Surprise

2008-08-25T19:52:00.000-07:00

What a day!! It seems as though we try to get past one day and then we get taken by surprise. Surprise!!! It started off very well with little Elli doing very well, considering the invasive nature of the weekend. She had leveled off last night and the night shift had gotten orders if she did so, to try to wean her off of her Dopamine, which seemed to be the only thing to keep her pressure up. Low and behold they got her completely shut off of it and she has done stellar all day even had her mean raise between 5 and 8 depending on time. Elli seemed to know she needed this.

While Cassi had gone on a trip to pump, as a part of her 3 hour ritual, it gives me some alone time with my little girl. While I was talking to her some of the doctors had came in and were discussing the situation of Elli and ultimately our family. Without Cassi here with me one of the surgeons gave me some important news on his way out of the room. With Dr. A and Dr. C discussing "rounds" their plan of attack for the day. Seeing that I was clearly distressed by what I had heard Dr C asked me to sit and listen. The doctors discussed the events of the weekend, and numbers, a lot of numbers, then Cassi walked in just as she did now so we are doing a computer pass as she types way faster than me.

After much discussion between the doctors and surgeons, and after multiple reviews of Elli's daily x-rays and ultrasounds, the final decision is for little Elli to have her repair surgery while on ECMO. The doctors have discussed the severity of her defect and because it is such a major one, they have ruled out the possibility of weaning her off ECMO before the surgery. Naturally when they told us this, I freaked out thinking that they aren't even going to give her a chance to prove herself. After Brian helped me calm down and I came back to reality, and the doctors explained their reasoning I started to understand. Because of the amount of bowel in her left chest is so great it has caused her heart to shift to the right side. So every time Elli tries to take a breath, her good lung ( right side ) compresses her heart causing it to not be an effective pump. Because the heart and lung are basically in battle for the same area, neither are able to work effectively enough to sustain her life. So even if they did try to wean Elli off ECMO, it would never work. So at this point, having her repair surgery on ECMO is the last and only option.

The risks of doing Elli's surgery on ECMO are very great, but with this being the only option, the surgeons and doctors have decided that Wednesday will be the day. Elli is theoretically not getting any better just lying around on ECMO since there is no plan to wean her off before the surgery, so at this point there is no reason to waste any more time before the repair. Over the next few days the plan is to keep Elli quiet and as stable as possible to prepare her for her surgery. They will be decreasing her Heparin (keeps her blood thin) enough to try to prevent bleeding complications after surgery but keep it high enough so that no clots develop in the ECMO system.

So as for now the game plan is for Elli to have her repair surgery some time on Wednesday, the surgery team is going to meet with us tomorrow to discuss the benefits, risks and possible complications and hopefully set an approximate time, pending no emergency surgeries arise. Elli will move into the adjoining surgery room either tomorrow or very first thing on Wednesday morning as long as everything goes to plan. There is another baby on ECMO in the surgery suite, but he is scheduled for a surgery on Wednesday also, but he will be going to the actual operating room. So after he leaves and the room gets a good scrub down, Elli will be on the move.

Of course this all came to a shock to Brian and I, we were not expecting her surgery this soon. While we knew that she would have to have the surgery some time, it is kind of a double edged sword. On the one hand this surgery will be the only thing that will save her life, but on the other hand we will get some real answers about the severity of the defect, the size or lack there of lungs and their ability to sustain life. So clearly we want her to have the surgery, it is just so scary to think that the surgery that will save her could also be what tells us if she can make it on her own. So with this news, we are asking for lots of extra prayers not only for Elli, but for the surgeons and nurses that will be holding our little Elli's life in their hands.

I guess that's it for tonight, it is all just a little overwhelming. We are just going to try to spend as much time with Elli as we can before her repair praying that she has the strength to get through the surgery and have the lung capacity to make it. Please keep Elli in your thoughts and prayers over the next couple days. Brian, Cassi and Elli

Always Changing

2008-08-25T09:50:00.001-07:00

This morning the nurse manger Barb decided that Elli could have her scalp IV taken out because it was no longer good. She said that since it was a peripheral site and had been clotted off, it was safe to take it out without risking Elli bleeding. She used this special cleanser so the tape would come right off and it didn't even rip any of her hair out. Elli didn't even notice that she took it out, and didn't move the whole time...what a good girl! So now she is in dire need of a shampoo and style, but for now we will let her proudly display her bed head hair.

Last night when I got up to pump around 3:00, I called to check on Elli, the night nurse Angel who has been on with Elli 4 of the 6 nights she has been at CMH said Elli was doing pretty good. Last night before we left, Elli had her labs drawn. At CHM they work off a protocol that if her Hematacrit is below 40, then she can have a unit of blood, unfortunately yesterday afternoon her Hct was 40.5 so she couldn't have any. Both Angel and I were crossing our fingers that it would be just low enough that she could have a unit during the night to keep her happy. The results came back and it was just low enough that she got what she wanted. Angel actually pumped her fist in the air and said "yes". During the night they decided to wean Elli's Dopamine, she started out the night on 12 mcg and by this morning she was weaned completely off, although her pressures have been considerably lower today, but Elli continues to have great color, is profusing well, and keeps peeing like a champ.

Elli ran her roommate out,(she was stable enough to leave the ECMO room) and now we are back to having the room to ourselves for the time being. Dr. A talked to us this morning about possibly going up a little bit on the Dopmaine, but the team has not yet made rounds, so the daily plan is still up in the air. Also, the area on her neck seems to be about the same today as yesterday, but it hasn't really been discussed.

Another change is to our website. Last night Brian and I were talking about how cool it would be to know who was getting on, considering we know that not everyone that visits the site posts comments, so we thought we would put a hit counter on our website, and holy cow, by this morning the site had been visited over 600 times! That is so awesome to know how many times people are visiting the site to check on Elli's progress. Also we put a live feed at the bottom that shows where people log onto the site from, we couldn't believe how far away some of the people who visited the site were from. It's pretty neat if anyone wants to check it out, it is at the bottom right of our page. So yah, for the Reeds, things are always changing!

ECMO Day 5- Miss Sensitive

2008-08-24T17:08:00.000-07:00

SugarBear helping to keep Elli quiet

What a tough day for mom, dad and Elli. I called during the night last night to check on her and the night nurses said she was doing fine, but when Brian and his mother got there, things were not going as planned. Elli was continuing to have blood pressure issues, this time worse than ever before. Brian said at one point her blood pressure was in the 20's and her pulse had dipped into the 80's. This crazy phenomenon happens when they switch out the lines, usually at 4:00 when they in theory "hang new bags of meds" but since she is so tiny, they are in syringes instead. Elli continued her crazy ups and downs with her blood pressure for most of the day, and when it was time to change the lines at 4:00, her blood pressure stayed low for almost an hour, and when the Dopamine finally kicked in, her blood pressure went up into the 80's and her pulse was over 140! The day nurse Tiffany was trying to keep her cool, but both Brian and I could see she was silently freaking out. I kept thinking she was going to call the doctors in, but never did considering they had been at Elli's bedside 5 or 6 times prior to this episode trying to figure out what all was going on. Elli finally did settle down, the nurses just think she is extra sensitive to the Dopamine and considering all the lines had to be changed, she goes without the Dopamine for a few minutes and in theory once it gets back through the lines she gets a big bolus, which shocks her little system.

Only to add to the drama, we had been noticing a puffy area near the ECMO cannula's on Elli's neck, and this morning when I walked in I noticed it was much bigger, as did the nurse. They called in the doctors and surgery team to evaluate it to make sure that her cannula's were not bleeding or leaking (if they were that could be a reason for the low blood pressures). They did an ultrasound around noon, but didn't see any active blood or fluid movement through the area, so hopefully it is just a little pool of blood under the skin from Elli moving so much. The doctors and surgery team decided that it was not a major concern and that they would just mark the site to determine if it was growing or not, and to sedate Elli more so she would not be moving around as much causing further irritation to the area. Needless to say, Elli had plans of her own, and decided that she wanted to be awake. The nurses tried to hold her arms and legs down and gave her PRN doses of Morphine and Versed but it still took almost 20 minutes before she finally settled down, and even then she was still fighting to try and keep her eyes open.

As for mommy and daddy, it was a long day of worrying about her blood pressures, the reasons for the crazy fluctuations and the worry that something might be wrong with the ECMO cannula's, considering they are Elli's life line. To add to we had many visitors (which we appreciate people coming and showing support) but with all that was going on, it was overwhelming, especially for me and I got a little emotional. Thankfully my best friend Darci came to visit and sat with me for a couple hours, let me vent, cried with me, and most of all was just there for me. It has been such a long day, hopefully tonight Elli will behave herself and stay quiet, if not the doctors will turn up her Morphine and Versed drips to make sure that she is still. So as of right now, we are just trying to keep Elli as comfortable and quiet as possible. It is so hard because I want to talk to her, but just the sound of Brian and my voice talking to each other makes her open her eyes and try to look around to find us, so it is really hard. We have been just sitting in the NICU looking at her, trying to say as little as possible.

Thanks for the continue support, thoughts, prayers and comments. It is helping us to get through each day! Lots of Love ~ Brian, Cassi and Elli

ECMO Day 4- Lots of Visitors

2008-08-24T06:12:00.000-07:00

Aunt Staci reading Elli "How Much Do I love You" She was awake prior to the book, but I don't think she got to look at too many of the pictures.

Elli finally calmed down after they turned her to her right side, she tends to get cranky when they try to turn her to that side with her ECMO cannulas. Thankfully SugarBear was there to help comfort her, she was really latching on to him.

And last but not least, Elli was wide awake yesterday around noon. I got this amazing picture of her with her eyes wide open, and of course she was sucking on her vent tube again. Overall she was pretty awake for periods of the day yesterday, but we were able to settle her down without them having to give her too many extra doses of Morphine and Versed

Clearly this is my NEW Favorite Picture...Is it just me or does she get cuter every day? She was so wide awake in this picture, her eyes were so intent on focusing on me. I can't beleive how beautiful she is, especially when I see those big blue eyes.

Yesterday was pretty busy for Elli, my brother and sister-in-law visited around noon. We tried to out wait the doctors for rounds, but they were running very late, so we finally gave up and went to eat lunch with them around 1:00.

On rounds, they decided that Elli was peeing too much, and stopped her daily dose of Lasix because she was getting too dry, so at 4:00 when they changed out all the lines like they do daily, her blood pressure started to drop off, luckily I was pumping, because Brian said that it and her heart rate got pretty low, but once they got all the lines hooked back up and called the doctor, she perked right up. Brian said the doctor no more than got to the bedside and her blood pressure was back to her normal. Must just be the doctor's presence and Elli knows to straiten up. They did decide to give her a 30ml Normal Saline bolus because she had several huge wet diapers through out the day, and one more with a little poo in it. At 4:00 while I was pumping, we had more visitors, my sister Staci, and my mom and dad. Elli was awake for a little while and then we got her to fall back to sleep without any PRN meds. While we were out to eat during report time, the doctor decided to order another Normal Saline bolus just to make sure that Elli wasn't getting too dehydrated. She responded really well to both and her blood pressure stabilized out for the rest of the evening.

Elli did get a unit of blood and platelets last night, per protocol according to her labs. This is very normal for a baby on ECMO because the ECMO machine pretty much eats up the platelets and some babies need platelets every 6 hours while others need them daily. Elli has been needing about 1 unit per day. Brian said the heard some where that a baby on ECMO for 38 days will use 6 gallons of blood (don't quote him on that, I think he read it on another blog, but it was something like that). But I called at about 3:00 when I got up to pump to check on Elli and the night nurse Cindy said that she really liked her blood and platelets and that she was doing great and had been sleeping most of the night, not requiring any PRN meds, so that was great.

We are looking forward to another boring but busy day, as Elli is scheduled to have lots of visitors, my parents stayed in KC last night as did my sister, and Brian's mom was already here this morning to pick Brian up at the Ronald McDonald house around 8:00. We are just trying to cherish all these moments we have with Elli while she is on ECMO because of how stable she is, after she comes off ECMO and has her surgery, she will be very unstable as she will have to do all the work of her heart and lungs which she is not used to doing. At that time, we will not be touching her much at all and her stimulation will be almost zero. So for now it is so amazing to see her each and every day growing stronger and responding to our voices. Each day Elli is growing stronger and so are we, but the more she is awake, the harder it makes to leave her each night, that little lady really knows how to tug on our heart strings.

Thank you to everyone who continues to check the blog for updates, it is so nice to know that so many people are pulling for Elli. The outpouring of support has been so amazing not only Elli but Brian and I. We love to read all the comments on the blog, actually Brian is kind of addicted to them, and loves to tell me about all the people who are thinking about Elli. I will try to post some more pictures this afternoon and let everyone know if there are any changes. As for now, The Reed family continues to gain strength and hope each and every day!

Just what Mommy Needed

2008-08-23T09:19:00.000-07:00

Last night just as we were about to leave, Elli did something we had never seen her do, she had her eyes open. She was looking all around and couldn't get enough of her Daddy. Initially the light was too much of a shock to her eyes, so we turned down the lights, that is why the video is so dark, but oh well. It was so amazing to see her awake and responsive and looking up at us trying to focus. You can see in the video that she is trying to focus and moving a lot. She also has the hiccups in the video, which she also did a lot when she was in my tummy and during her ultrasounds. At one point she was looking at me and I got right down by her face and told her how much I loved her and how beautiful she was and she immediately threw both arms up in the air like she wanted me to pick her up, and man did I ever want to, but resisted (barley). She was squeezing Brian's finger and pulling his hand down to try to get them both in her mouth. She was using the trachea tube as a pacifier last night and just sucking away on it and blowing bubbles. She was wide awake for about 30 minutes and Dad and I just ate it up, we didn't want to leave, but the nurse bless her heart let us "play" with her the whole time. Finally it was time to call it a night (around midnight) and we covered her eyes back up and tucked her arms and legs in to try to get her cozy, and she did end up falling back to sleep, but she didn't really want to. That 30 minutes was the best 30 minutes of my life. I could see my baby Elli for the first time, it was so amazing to see her look up at me and it literally melted my heart, and her daddy's.

I woke up during the night to pump and called to check on Elli, the nurses said that she had just woke up around 4 and had a poopy diaper! Not that she is getting any feedings in her tummy, she had just passed her meconium stool, but still that is always a good sign. The night nurse said that she was wide awake again and playing around, but this time she couldn't get her to calm down as quickly, so she ended up giving her a PRN dose of Morphine which settled her right down. The night was pretty uneventful, her vital signs have been staying pretty much the same, even during her awake periods, which is always a great sign. I am waiting for the Doctors to round this morning still, so if there are any changes I will post, other wise, I am going to play with Elli, it looks like she is starting to wake up again, she is moving around a lot so I am going to go check on her!

What a boring day

2008-08-22T18:57:00.000-07:00

Here is Elli posing with SugarBear, he is keeping her from getting that thumb up to her mouth. She has been trying to get it there all day. They had to give her extra doses of Morphine and Versed today because she has been trying to be so active and moving her arms and legs around. Earlier today she was breathing over the vent setting of 20, which tends to allow air into her stomach and intestines so they don't really want that. So since about 3:00 when her roommate came, she has been pretty zonked out.

They have been having the lights on more this afternoon, and Elli really squints when they are on so this is the little cover we use to keep the bright lights out of her eyes (note it is pink and brown - the same color as her new room!)

Overall Elli had a really stable day. Not much changes, her blood pressure continues to be really good for her 50's/40's with a mean of around 50, without any additional boluses or med changes other than the slight increase in dopamine this morning. She continues to have really good urine output so the daily Lasix is really doing it's job. As for her right arm, it looks immensely better even this afternoon. They did a Doppler of her brachial and radial pulses to make sure that there were no clots and everything looked great. They think that the ECMO cannula's are causing a slight obstruction in her neck, but overall she has good pulses and good tissue profusion. I did have a little bit of a freak out moment this afternoon. Brian's sister and brother-in-law came to visit us from Iowa and Brian and his brother-in-law Charles were visiting with Elli as I was pumping. When I got done pumping I stopped in quick to see Elli and I sort of freaked out, well actually I did. I spazzed out and asked the nurse when the last time she was over to look at Elli. I noticed right away that both her arms and legs were all red and splotchy. Of course our nurse did notice it after Brian asked the nurse if her skin was reddened because they had just turned her from the side she had been laying on for most of the day. At first Brooklen our nurse thought that it was from lying on that side, but when it was on both arms, legs and her cheeks, she chalked it up to the antibiotic Gentamycin that she had just given her a few minutes before. The rash ended up fading pretty fast and is now completely gone.

Well Brian and I are going to head to the Ronald McDonald house for the night, planning on trying to get a good nights sleep. I am sure that when I get up to pump I will have to call to check on Elli just for a little piece of mind. It is so nice that the night nurses don't get annoyed with me calling, or at least they haven't said anything. We will let you know any new news tomorrow! Pray for more boring days!

ECMO Day 2- Going Good

2008-08-22T08:57:00.000-07:00

Where's Elli in all that Equipment?

It's hard to believe that it could take all those machines to keep one little Elli stable, but it does. Elli has 2 nurses at her beck and call pretty much all the time. On occasion, they will have 3 nurses for 2 ECMO babies, one floating back and forth. Cory (the female nurse) is now on her 2nd day of Elli duty. She is so attentive to Elli and her crazy mom ( I am always wanting them to suction her mouth because she is pretty much a little slobber monster)

A little bit more awake today, but still pretty drowsy. Moving her arms where she wants them every time the nurse trys to adjust them where she wants them. Elli finally won!

You can see how discolored her right arm is in this picture (more info on that below)

We are getting to touch her a little bit more today, it doesn't seem to effect her as much as some other babies on ECMO. Usually when touched these kiddos will have episodes of high blood pressures, in Elli's case, she only has a slightly higher blood pressure (still below normal) when they change her diaper. Her blood pressures are still on the low side but as long as her mean blood pressure stays with her gestational age in weeks ( 40) then the doctors are satisfied.

Elli giving Daddy a little squeeze.

My new favorite picture of Elli!

A close up of her precious little face. She has had that hand up by her mouth ever since they turned down the Morphine and Versed and smacking her lips like she wants to suck her thumb. Her eyelids are looking even less swollen today thanks to the Lasix.

Elli is getting a roommate today, so Mommy and Daddy had to pack up all their junk and move it over to one side of the room. We have been spoiled by having the room all to ourselves. Elli was very stable all through the night. I called around 2:30 this morning when I woke up to pump and the night nurse Angel said that she has had no real changes other than she has been trying to swat the nurses away with her hands. Needless to say when we got here this morning, they had turned her Morphine drip back up, but she is still squeezing our hands in response to our voices, so that is good, I was just hoping that I would get a good look at those big blue eyes.

We were here for the doctors to make rounds this morning and basically is going to be more of the same. Elli is looking very stable on ECMO, her blood pressure issues are continuing to baffle the doctors on why it is staying so low, but they are not too concerned considering that she is having good tissue profusion, and her color is good and her pulses are also pretty good. The color in her right arm is looking better today. It was pretty swollen and reddened yesterday, so after the Lasix they gave yesterday, the swelling and redness did go down a little bit, and it looks even better today. They have been keeping it elevated with her SugarBear that was donated from the hospital. She really seems to enjoy giving him little hugs now and then. The doctors decided that since she had such a nice response to the Lasix that they would add that to her daily medications. One change for today is that they did decide to just slightly raise her dopamine rate to try to keep her blood pressure in that mean area of 40 and now looking at that monitors her arterial blood pressure is 60/46 with a mean of 50- way to go Elli!

Other than those slight changes, the plan is to keep her on ECMO and stable for the next 5-7 days and continue to let her rest. She is doing as well as we can ask considering the severity of her defect. The Doctors on rounds yesterday said that it was one of the most severe cases of CDH that they had seen here at Children's Mercy, and the fact that she has stabilized out so quickly and that I carried her to term are both great signs for her. We know that there are many tough days ahead of us and we are prepared for whatever Elli decides, for ultimately she is in charge.

Elli had a super busy day yesterday with visitors in and out, I felt like I barley got to see her so Brian and I ended up staying at her side very late last night. Her Grandma and Grandpa Reed came to visit and stayed most of the afternoon, and also had quick visits from her Great Aunt and Uncle Lewis, and Great Aunt Linda Sue. One of Brian's best friends forever Brian Stevens and his wife Shelly came to see Elli and then we went out for a quick bite to eat while they were doing shift change ( we get kicked out of the room from 7 to 8 each morning and evening when the new nurses come on).

As always I will try to get some more pictures when they turn the lights on. Brian and I are hoping for a slow quiet day. Brian is going to catch up on some Sports Center and I am going to attempt keep pumping and make some calls to friends that I have neglected over the past couple of days. So if you have called us and we haven't called you back, be patient we are going to get to it as soon as we can. Elli continues to amaze us both with her strength and determination, she is truly a miracle and we love her so much. Thank you to everyone for the continued words of encouragement and prayers, they are helping and we appreciate every one's offers of help. As of now we are doing good, trying to take care of ourselves and let Elli rest. Hoping that the next several days are boring and much of the same with Elli continuing to become more and more stable taking baby steps towards her next hurdles, weaning off ECMO (we are not even thinking about it for another 5-7 days). We will continue to let you know about her progress and how we are doing. Check back for more picture soon.

On a side note- I am actually wearing jeans today! I might have Brian take a picture. I didn't think I would be able to wear REAL jeans for a long while after Elli was born, but there on, I do have a slight Muffin Top but I guess that is to be expected considering I had a baby less than 3 days ago. Wow it seems like forever ago that we had Elli but I guess she will be 3 days old this afternoon at 3:00. Well I am off to pump and then grab a bite to eat.

Stable through the Night

2008-08-21T08:35:00.000-07:00

Miss Elliott on ECMO day 1

Brian and I checked up on Elli during the night, and she was staying pretty much the same, still having issues with low blood pressures, it seems that she really likes a high volume of blood runing through the ECMO machine, so they did end up giving her another unit of platelets, a unit of blood and a bolus of Albumin to keep her blood pressure in the acceptable range. She is still having blood pressure issues this morning, but not as bad as yesterday when we were here.

Yesterday the doctors decided to reduce Elli's sedation medications because she was pretty limp, they decreased both her Morphine and Versed drips down to 30 from 50, and we really noticed it this morning when we got here. She even had her eyes peeked open just a little bit and was able to give our fingers a little squeeze. The doctors have not yet made rounds, but we are anxious to hear if they have any new ideas of why Elli's blood pressures continue to remain on the lower end.

We are attempting to figure out how all of this NICU business works, Brian continues to call me a chicken because I get too nervous to ask some questions, like if we can use a laptop, but I finally did, and they said it was fine, so we will be doing a better job of keeping the blog page up to date, the last 48 hours have been so hectic it was hard to find the time to think let alone type on the blog page. I am hoping that I can get some good pictures today when the lights are on, because she is just so darn cute I can hardly resist. Thanks for all the comments, prayers, and words of encrouragment, we are hanging in there, and so is Elli!

Elliott

2008-08-20T21:51:00.000-07:00

Just a few pictures so everyone can get a little sample of how beautiful our little Elliott is, we wanted to take more tonight, but were afraid because of how her blood pressure was when we left the NICU, will try to get some more of her cleaned up and some with dad in the pictures!

Elliott Arcile Reed ~ 6lbs. 8 oz

Elli Just a few seconds after birth

Getting stabilized in the delivery room.

In the St. Lukes Nursery awaiting the Children's Transport Team

Mom's first time to really "see" Elliott and to hold her hand at Children's Mercy just 5 hours after birth. Elli is on the "Jet" vent in this picture, not yet on ECMO.

First Steps were too big

2008-08-20T20:05:00.000-07:00

Well to everyone sorry it has been so long since post, but alot has happened and as most of you know hospitals are like time suckers. First off last night we got Cassi a 4 hr pass and went to see Elli. We spent about 3 1/2 hrs with her and met too many people for me to remember. (sorry) Anyway her blood pressure was fluctuating about and after we got back to St Lukes (I crashed at 11:45)Cassi tells me mercy had called and wanted permission for a transfusion at 1:30. At 5 Cassi called mercy and Elli was still having a bad night.

I was ripped out of my sleep by our doctors voice this am checking Cassi and getting ready to dismiss her around 7. Nurses brought in some breakfast for both of us and I got in shower to be ready when Cassi was dismissed only Mercy called at 8 and said we needed to be down there Elli was steadily getting worse and she was going to have to be put on ECMO. So by the time we made it we got to see curtains closing in Ellis room and there must have been 20 to 25 nurses and doctors in her little room. Overwhelming is an understatement, I don't care how prepared I thought I was.

We then waited in a family room met various other people who started our orientation of the ins and outs of the hospital and this cdh baby thing. I think mostly to take our minds off of the other room. Elli's procedure really did not take very long for as intrusive as it is, a little over an hour. We then got to go back in and see her she looked a whole lot better than last night actually had a pinkish color instead of pale. We discussed the plans for the rest of the day with the doctors and figured our "4 hrs tour" was just about over so we got Cassi back to St. Lukes to get rest of stuff out of room and get discharged.

Cassi actually ate lunch at St. Lukes and pumped again before we finally got out of there. It wound up taking a lot longer to get back because we had to stop and shop for pants maybe I should say wanted to stop, seriously, I had been giving Cassi a hard time because she had not gotten any clothes and needed some sort of clothes (not all mine) to get by. So it was around 3 when we got back to find that Elli had a super tuff afternoon. The doctors have had a terrible time keeping her stats in the range needed. After discussing over options it wasn't hard to figure out how frustrated the doctors and nurses were are. More tests still cant be sure how much lung is on left side and seems like when right lung gets breath it pushes on heart and throws everything over making one side not work to its full potential. So blood pressure is till plunging way to low. Just when the medicine that was put in would take affect her blood pressure would surge too high. This seemed to be a circular pattern several rounds of meds on and off or lesser greater doctors in and out phone calls etc she seemed to get fairly comfortable with the idea of this machine working for her and not so much of her working for it. All of the tweaking seems to have finally helped and leveled off for now.

We got to Ronald McDonald house at around 10: 15 and got to turn on computer. Thanks for all the posts, prayers and support it makes it nice to read and see it all after a day like this.

I'm tired now. Thats all I want to say tonight .

love and thanks

Brian and Cassi

Ps sorry for not posting pics yet.

We have a new arrival

2008-08-19T14:20:00.000-07:00

Elliott Arcile Reed was born today the 19th of august at 2:58 pm!!
She weighs 6 lbs 8 oz and is 19 and 3/4 inches long. And doing fine good so far.
Not much time so I will post again later.

Mr. Reed

No rest for the weary

2008-08-19T06:07:00.000-07:00

Another long night last night. The recliner is not exactly 4 star. Well we have been started on pitosin again this morning at 6:30 so Cassi is (really has been all night) contracting again. She had prostaglandin gel at about 10 pm to help ripen the cervix. She slept good about an hour after the gel kicked in she said it was worse than the contactions she had earlier. She said it was a nonstop neverending contraction. So from 11 until around 2 she walked, sat, layed, hoped, but nothing seemed to help. She finally gave in and asked for some meds. Stadol, is what she got and it was the right stuff, for both of us finally got some sleep, brokensleep, until 6 am. So now we are waiting for cervix to be checked, get water broken, and get this rolling I am ready to see our little girl.... until later
Mr. Reed

This is the "Pits"

2008-08-18T15:24:00.000-07:00

Monday, August 18, 2008 ~ 39 weeks 1 day

Got to St. Luke's this morning, and they didn't even know we were coming, very frustrating, but ended up meeting up with Ashley(the fetal-maternal coordinator) and she said that they all should have known, that the NICU knew, and so did Children's Mercy, but aparently the Labor and Delivery unit didnt. Needless to say it was a pretty slow start to the morning. They ended up starting my Pitocin drip until after 10:00. They got a good pattern going, and the contractions were coming every 2 minutes. I was definatley feeling them and towards the afternoon was getting quite uncomfrotable. At around 5 Dr. Gibbs (he's the on call perinatiologist) chekced my cervix and it had not changed at all from this morning. What a bummer. So instead of risking me delivering in the middle of the night, they decided to stop the Pit drip, for the night, let me eat, and start it all over first thing in the morning. Needless to say I will be resting up tonite for an anticipated long day tomorrow. Feeling good, Brian is going to go out and get me food, hospitality dining just isnt that appealing. We'll keep everyone posted!

The Anticipation

2008-08-17T20:09:00.000-07:00

Sunday August 17, 2008 ~ 39 weeks

Spent the day with Brian picking up the garage and hanging out with the dogs, didn't do much else, seems like there was too much on our minds to do anything that productive, but it was so nice just to have the day for the two of us, Brian even made me fresh blueberry waffles for breakfast (he reminds me daily of how much I love him by all the little things). Finished packing up all our bags, I am pretty sure that I packed more for this trip than I did for our wedding/honeymoon in Jamaica! House is spotless, the dishwasher is running, trash all put out, last bills paid, all laundry done, and yet I feel like I am still forgetting to do something. I am sure that I will think about it tomorrow during labor, that is so like me. We will be leaving around 5 in the morning tomorrow in order to get to St. Luke's by 7 or 7:30, and as soon as we get settled and know that plan will let everyone know. We are so excited and so scared, words will never explain the anticipation we have had for our baby girl.

No Baby Today

2008-08-15T10:50:00.001-07:00

Friday August 15, 2008 ~ 38 weeks 5 days

Happy Birthday to my husband Brian! Thought a baby girl would be the best present but it doesn't look like that is going to be the case.

Yesterday my mom and sister came down to visit and get some stuff packed up. We ended up painting the bathroom in our current home to give it a little sale appeal, painted it a green color, got the paint from Walmart, didn't exactly turn out to be the color I thought, but looks good. I ended up packing up most of the living room, and scrubbed the house pretty much from top to bottom, so with any luck we might get a buyer this weekend (keeping my fingers crossed). By the time I got everything packed up and cleaned up it was pretty late and I was exhausted and just wanted to sleep, but my body had other plans. BGR was moving around most of the night and I had contractions off and on all night long, so didn't get to sleep as much as I thought, but oh well.

Went to see Dr. Golightly this morning - lost a little weight, baby's heartbeat sounded good, blood pressure was a little high, feet noticeably less swollen, dilated between 1.5-2, 50% effaced, and still soft, so slightly farther along from last week. I was hoping that I would be dilated to a 5 or 6 and we would head down to Kansas City this afternoon, but no such luck.

The game plan is still to go to St. Luke's in Kansas City on Monday morning for a probable induction, if everything looks the same if not better. I really wish that when I went down I was already into labor...any good hints for getting this baby thing going?, I am still nervous about the induction thing ( my fear of C-section!). I have got one suggestion so far, to drive on this very curvy bumpy road in the area, it worked for one of my friends.

Pictures as Promised

2008-08-12T21:00:00.000-07:00

Make an on-line slide show at www.OneTrueMedia.com

Hope this works- tried to create a slide show of the mostly before pictures of the house. I still have to post the after pictures, but it might be a while since I forgot to take any this weekend when we were up there. I might have my sister take some and e-mail them to me. There is a little sneek peek of the baby's room at the end- pink and brown- I think my favorite room

I Dropped!

2008-08-12T17:04:00.000-07:00

Tuesday August 12, 2008 ~ 38 weeks 2 days

I noticed yesterday when I went to put on my "comfy" shorts that they were extremely tight, didn't think much of it, and then I looked in the mirror. My little lady had dropped, and I mean big time, my bra's will have to do their job now that my tummy is not doing it for them. I cannot believe how much lower my stomach got overnight. I have always been carrying high, so now I feel like I have a medicine ball sitting on my bladder/hips. I fear that I now have the dreaded pregnancy "waddle" which I have not had until now, but seriously, it pretty much hurts to walk. I guess that is what women that have boys deal with from the beginning.

Brian had a several dreams last night about the delivery and he is convinced that I am going to naturally go into labor on Friday (which is his birthday). Who knows....but I am starting to feel the signs. I am curious to know if my cervix is changing at all because I have been having contractions off and on for the last couple of days. I know some are Braxton Hicks, but some just outright hurt.

I guess that I have learned a few things from this pregnancy- 1~Buy maternity clothes~ I on the other hand did not and now have nothing to wear after I give birth. I thought since I would either be at work ( in scrubs) or bumming around the house, I could just use Brian's wardrobe as my own and not have to buy anything and save a ton of money. Not the case, I cannot wonder around Children's Mercy in Brian's huge athletic shorts and stained up work shirts. I ventured to JC Penny today in an attempt to buy at least some pants...well since the little lady dropped yesterday, I am pretty sure my waist is about the size of a compact car. I did buy a few pairs of pants, not knowing if they will fit soon after I deliver, they fit in the butt and hips, but were pretty far from buttoning, I guess I will use the old hair-tie trick around the button for a while if I need to. So this is a warning, if I look like I just got done working out, I didn't, I just didn't buy maternity clothes when I should have. 2~ Flip-Flops are deceiving ~ They are so comfortable when you are not pregnant, and when your feet are all swollen up like you are wearing slippers, you would assume that the airiness of flip-flops will be like heaven on your feet, well that is not the case. I have repeatedly made the mistake of wearing flip-flops while working on the house, going shopping, or any other time that my feet required "shoes" and every time that I take them off, I still have the indention of where the straps were because the swelling pretty much engulfs them. You would think I would learn, but no, I continue to wear them. Next pregnancy I hope it is in the winter and then I won't be able to.

To all my fellow St. Francis Ladies- I will be back. Not for good, but I am going to work a few shifts a pay period after my 6 weeks of maternity leave so I can rub it in on how cute my little girl is, oh yeah and to see you all too!

We'll keep you posted if there is anything exciting going on before Monday, Brian said that he is even going to try this blog thing out on that first night, so it will be interesting to hear some news from his prospective. Thanks for all the continued support, it's amazing!

Must be the Hormones

2008-08-08T15:19:00.000-07:00

Friday August 8, 2008 ~ 37 weeks 5 days

Last night I couldn't sleep, darn belly really keeps me from getting comfortable since I had always been a stomach sleeper in the past, so I stayed up and read a book for a while. All the sudden I started to get really sad and mad all at the same time and just started bawling, not to mention it was 3:30 in the morning. Brian woke up and thought I was mad at him, defiantly not the case, I guess I was just hormonal and overwhelmed that we are going to start the next chapter of our CDH journey in 10 days! Of course Brian's reply was, "Well baby we have had 20 weeks to deal with this so why are you so upset now?" Not what I wanted to hear and it made me cry even more, and for the life of me I couldn't stop. Brian attempted to console me, but ended up falling back to sleep within minutes which I was glad since he was going to have a long day at work. So this morning I woke up with a "crying hangover" and had a horrible headache that was magnified by the fact that I had to sit through Safety Day at the hospital where I work.

Wednesday night was my last scheduled night to work on the floor at St. Francis, so I have all next week off to get some stuff done, aka packing before we head down to Kansas City. It is so bittersweet, I am going to miss everyone that I have been working with, and knowing that I am not going to go back after the little lady is out of the hospital really stinks. I am going to have to find a job as a nurse in Council Bluffs or Omaha so we can get new insurance that will let us do all of our follow-up appointments at Children's in Omaha since we will be only 45 minutes from there after we move. I wanted to stay on part-time in Maryville, but my insurance would only pay in Kansas City, so that would mean that I would be driving to Maryville to work (100 miles) and to Kansas City for follow-up appointments (200 miles) several times per month, which is so not feasible. If I could only convince my insurance company to let me do whatever I wanted to, that would be so much better but that is pretty much a fat chance!

The last couple days have been really nice, eating out to lunch with friends and doing CPR training and Safety Day have been a treat for the continuing cankles. Today I got a pedicure with my friend Kim from work and it was amazing. I am pretty sure that I could get my feet rubbed all day, even though I felt bad for the lady doing it since my ankles were so puffy, but she didn't seem to mind.

I had a doctors appointment today in Maryville with Dr. Feuerbacher, again everything looked pretty much the same as it has been. Weight- up, Cankles- swollen, Urine- protein, Blood Pressure- normal, Belly- big, Baby's heart rate- 130's. The only thing that was different this week is that I am actually measuring at 38 weeks, I don't really know what that means, hopefully it means that baby is swallowing the amniotic fluid better and that my level is lowered. Dr. F. checked my cervix and I am officially dilated to a 1, 40% effaced or thinned, and the cervix is soft. All in all he said that it was a "favorable cervix" for induction. I have voiced my concerns many times about induction with him, since the last thing I want is a c-section, but ultimately I will do whatever is best for my baby girl. He said that over the next week hopefully my cervix will continue to change and that come Monday the 18th everything will look good for a successful induction. I think he just doesn't want me to not be induced, come home and then go into labor and come to the Maryville hospital where he would have to deliver the baby if I was in active labor, (he didn't say that in so many words) but I promised that I wouldn't do that to him or my friends. I have an appointment with Dr. Golightly next Friday since Dr. Feuerbacher is going to be out of town to have my cervix checked again to see if we are making any progress, which I hope is the case. I really want to go to the induction in Kansas City dilated to a 2 or 3, thinking that will indicated that my body as at least beginning the labor process, instead of being induced and medications starting the labor process for me.

All in all I am super excited and nervous all at the same time. It seems like Brian and I have had so long to prepare for this and have been "ready" to get the baby the help she needs, but at the same time, we are so not "ready" to face all the unknowns. We are heading up to Iowa in the morning to finish up a few of the last projects, and it might be the last work weekend before the baby comes. I am going to post before and after pictures hopefully some time next week when I should be packing and cleaning and not at work. Sorry this post got so long....like I said...It must be the hormones. Thanks to everyone for the continued support, especially all of our friends in the community and the hospital. We have no idea how we would get through this without all the thought and prayers. Thanks again. Brian and Cassi

Just a Quick Check-Up

2008-07-31T18:02:00.000-07:00

Thursday July 31, 2008 ~ 36 weeks 4 days

Last night I was working my 12 hour shift and one of the other nurses was taking blood pressures for a wellness thing, and I asked her to take mine. I was shocked when she told me that it was 145/98! Yikes that is super high, especially for me. By the end of the shift this morning I was feeling pretty exhausted and the swelling in my ankles was overlapping my socks- gross! Anyways I decided that I had better go for a quick check-up to make sure everything was going okay. Dr. Feuerbacher was out of the office so I got a late afternoon appointment with one of his partners.

By the time that I slept a few hours today and went to the appointment I was feeling much better and the swelling was almost gone in my ankles. Everything looked good at the appointment, my blood pressure was 120/82 and I had no protein in my urine which I was a little nervous about. Dr. G. said that I should monitor my blood pressure when I got to work and then a couple times throughout the shift just to see how much it fluctuates and if it stays high and for how long. Luckily I don't work any more 12 hour shifts, I am working 8 hour shifts all next week and am off for the entire week before "the big day".

Still working like crazy trying to get the house finished up before the baby comes, we are planning a big weekend of finishing up a lot of the projects before the people come to refinish all the hardwood floors on Tuesday, it should be a long, hot weekend. I cant believe how much we have already gotten done, but how much there still is to do.

It's so hard to believe that in 2 and a half weeks we will be saying hello to our little lady, seems like we have had forever to prepare yet it has gone by so fast too. Hopefully she will wait as long as possible to make her debut giving her more time to gain weight and strength. Thanks to all who have shown us such amazing support during the last months, it was been overwhelmingly kind. Thanks again! Brian and Cassi

Oops..I spoke too soon-

2008-07-21T14:21:00.000-07:00

July 21, 2008 ~ 35 weeks 1 day

I guess that I spoke too soon. When everyone says "oh you are going to be the biggest when it is the hottest, your going to be miserable" I would always reply...oh the heat doesn't bother me, I love the summer and enjoy (or used to enjoy) just laying out or going to the pool. For sure, I retract that statement, this Missouri heat is insane...100 degree + heat index. Just getting groceries and dog food today, I walked out of Walmart looking if I had just got out of the shower...yuck! When I got home I didn't even unload the non-perishable items, poor hubby will have to unload that when he gets home from work.. Thank goodness for air conditioning, I will be paying our electric bill with a smile this month.

Please send up some extra prayers for Sofie in Kansas City as she has completely reherniated and has a loop of bowel in her right chest cavity. She will be having surgery this evening, she has already been through so much, so please keep her and her family in your thoughts and prayers. There is a link to her blog page from ours on the right hand side of our page if anyone wants to know how everything goes.

Oh one more thing, I heard that there were a ton of turquoise CDH wristbands walking around this weekend at the Nodaway County fair from several different people, so thank you to everyone for the continued support, the little lady will be here so soon! Thanks again- Brian and Cassi

4 more weeks!

2008-07-17T21:30:00.000-07:00

July 17, 2008 ~ 34 weeks 4 days

4D of Her Precious Little Face, she is resting on her hand.

I have no idea where she gets those chubby cheeks!

This update is a little late, I went to Iowa to paint a few rooms in our house we are re-modeling for the day, and we didn't get home until very late yesterday. Got two rooms painted, the spare bedroom is a red color and the baby's room which is pink and brown. They will both need a second coat, but my mom is going to be doing it this weekend when I am at work.Our appointment on Wednesday was at 1:oo and our ultrasound lasted until 2:15, I think it may be one of the longest one yet. There was a GE sales rep there trying to sell them a new ultrasound machine, and they asked if I would be a guinea pig. I said sure, but didn't realize it would take so long. The pictures were really clear and at the end of it they did some 4D pictures which we haven't had before.

Everything on the ultrasound looked pretty much the same as it had the month before, same organs involved, but Dr. Gray said that since things looked the same, that was the best we could hope for. As for my amniotic fluid level, he said that it is a but higher than average, but overall it doesn't look any higher than a month ago, so that is a great sign too! As for our little princess, she didn't reach mom and dad's goal of 5 pounds, they said that she was weighing in just under 5 pounds and is in the 20th percent on the growth chart, so I guess she is going to have to really start gaining for these last 4 weeks.

After the ultrasound, I met with one of the OB nurse practitioner for a check up to ensure that I was not getting pre-eclamptic. The swelling has gone down dramatically in my shins and ankles. Brian and I discussed the reasons for this, and we are pretty sure it was because the days before my appointment I worked 3 12 hour nights, and then spent the entire weekend working on my house in Iowa, and then went to the doctor first thing on Monday morning. I think I just over-did it and needed to get off my feet for a while. They did a blood test to test my liver enzymes which is a pretty accurate indicator of eclampsia, and all my blood work came back normal. As for my weight and blood pressure, both were fine, no weight gain since last week, so basically that says I am not filling up with fluid.

With all this good news, no changes in the baby especially her movements, as she was super active at this appointment, even Dr. Gray remembered from last time how "naughty" she was. She was even trying to kick the ultrasound wand off of my belly, but Brian and I thought she was actually behaving pretty good considering her normal. Anyways, with baby and I both looking well as can be expected, the team at St. Luke's has decided that I can try to make it to 39 weeks. So the tentative induction date is August 18th. They said that I don't have to come back for any more check-ups or appointments until I am in labor or on the 18th which ever comes first. I will continue to have weekly check-ups with Dr. Feuerbacher in Maryville until birth-day, just for the regular business. Brian and I were pretty excited about this news, so fingers crossed, we have 4 more weeks to get ready for this little lady to make her debut.

This has been a pretty tough week for other CDH babies and their families, two CDH babies, Seth and Daniel have earned their wings this week and Sophie has possibly reherniated, so please continue to pray for their families to find the strength needed to get through these difficulty times. We continue to thank everyone for their comments, thoughts, and prayers for us and our families, keep them coming, we love to hear from everyone!

I can't believe I have Cankles!

2008-07-08T14:41:00.000-07:00

Tuesday July 8, 2008 ~ 33 weeks 2 days

This morning I had a regularly scheduled check up with Dr. F. in Maryville. Of course it was much of the same, weight, blood pressure, and measurements. Everything looked pretty good except I have been having trace amount of protein in my urine throughout my pregnancy but today it was 1+ (just how they measure it) and I have been having a lot of swelling in my feet and legs. Thus the cankle- where the calf and ankle flow together - yuck! Since it was first thing in the morning and the swelling was still very evident (1+ pitting edema- aka pretty gross for someone who is otherwise a healthy 24 year old) Dr. F. decided that I should get checked out next week instead of in two weeks, unfortunately he was going to be out of the office next week. I guess I need to cut back on my salt, drink more water, and try to keep my feet up whenever possible, which seems to be impossible, to try and keep the swelling to a minimum. These are a few of the signs of pre-eclampsia, but my blood pressure was 110/70 which looked great, so he is not too concerned. Also I have been continually been measuring farther along than I am. Today I was measuring at 36 1/2 weeks, which is consistent with the three weeks larger that I was measuring two weeks ago, so that is a good sign that my amniotic level is not on too much of a rise. He suggested that I see an OB doctor at St. Luke's so they know what is going on with me and since he will be gone. I have an ultrasound appointment next Wednesday so I decided that I would try to get an appointment for the same day.

I contacted Ashley who is the Maternal-Fetal Coordinator at St. Luke's and she wanted to know if we wanted to "transfer care" to St. Luke's. I opted for not since that would pretty much ensure me weekly trips to Kansas City. I asked when that was usually done and she said not until 37 or 38 weeks, so that is the plan. Just meet with the OB Dr's in KC next week for a check up but not to fully transfer care until a) 37 or 38 weeks or b) something with my health changes.

All in all both baby and I looked good. Her heart rate was 139 which right about where she has been staying. Dr. F. could feel that she is defiantly head down, and that all the discomfort in my rib cage is her big feet attempting to stretch out. Still no birth plan but hopefully we can nail that down next week at our appointment, it seems like the time is flying by and Baby Girl Reed will be making her debut before we know it. So excited, yet so nervous. Thank you to all of those who continue to keep us in your thoughts and prayers, it is so appreciated.

It's Confirmed!

2008-06-24T11:10:00.000-07:00

Tuesday June 24, 2008 - 31 weeks 2 days

As if there was ever any doubt that I had the sweetest most caring husband, he goes and does something like this and totally...confirms it. I worked 11p-7a last night and assumed that my good news about passing the NCLEX would travel fast, but I had no idea. When I got to work everyone was very excited and wanted to know all about it. Then another nurse that I work nights with said, if you don't take them home. I will. By this point I was pretty confused and when I walked up to the nurses station, these are what I saw....

Brian had called my friend Lindsey Kenny at Bittersweet Floral in Maryville and had them delivered. My co-workers had the pleasure of enjoying them most of yesterday and into this morning. They are so beautiful, they both did a great job. So yes it is confirmed, I have the cutest husband ever, ( and soon to be cutest dad ever ).

I Passed...Again!

2008-06-23T10:59:00.000-07:00

Monday June 23, 2008 - 31 weeks 1 day

As promised I am posting a picture of my pregnant self. The wedding this weekend was at an outdoor gazebo- holy hotness- but beautiful.

If you cant tell by the title, I PASSED my NCLEX. I took 75 questions, and was freaking out when I left. I was so nervous, but thank goodness I passed. I guess that is one hurdle down for the summer.

On the 2 week Plan

2008-06-20T20:31:00.000-07:00

Friday June 20, 2008 - 30 weeks 5 days

1st off Happy Birthday to my sister Staci as she is celebrating in Iowa today, preparing to be the best Auntie ever!

I had a routine check up at St. Francis with Dr. Feuerbacher today, as I am now seeing him every two weeks. Everything looked pretty good, I am measuring at a little over 33 weeks. He measures from my pelvic bone to the tip of my fundus. This generally correlates to how many weeks along you are, but since my amniotic fluid has increased, so has the size of my belly, making it look as if I am farther along than I really am. My blood pressure was fine as was my weight ( a number I will never disclose ). We talked about the appointment that I had on Wednesday, since Dr. Feuerbacher is about 10 days behind, I usually give him the scoop before he gets the written reports from Dr. Gray in KC.

All in all I am feeling pretty good, tired, but good. My feet have really started swelling more and more, so I decided to treat myself to a pedicure today. It felt amazing. We are heading out of town for a wedding this weekend and I will be taking my NCLEX (state board of nursing test) tomorrow morning in Kansas City. We will try to take some cute pictures so all those who haven't seen me for a while can check out my "baby bump" as my best friend Darci puts it. I am pretty sure I surpassed the "bump" phase about 10 weeks ago, but who knows.

Sounds like baby Kinley is having a pretty rocky 48 hours post operation, so please keep her and her family in your thoughts and prayers ( and it's okay to slip one extra in for me to pass my NCLEX). As always, thanks for the overwhelming support. Love to see all the turquoise bracelets, especially at my work. We have decided to order a bunch more since we are currently out. So everyone is soon to have one.

No News = Good News?

2008-06-19T11:55:00.000-07:00

Wednesday June 18, 2008 - 30 weeks 3 days

Profile shot of her face

Her BIG feet- Dr. said she has very long arms and legs~ wonder where they came from?

Sucking her thumb with her pinkie out

The arrow is pointing to hair on the back of her head- they say she has a ton!

Lying on her side with her arm curled up around her face. She was in the craziest positions.

Yesterday we had another appointment at St. Lukes for an ultrasound to ensure everything was right on track. It had been a while since we had one, i think almost 5 weeks ago so I was pretty anxious to see how much our little girl had been growing. Our appointment was at 1:00 but we didn't get into see to start the ultrasound until after 1:30 because they are making everyone re-register in admissions for every appointment which takes forever.

This ultrasound was pretty short, they took measurements of all the little bones, head, abdomen and my amniotic fluid level. Dr. Gray who saw us last time was the Perinatiologist that saw us yesterday. He said that everything looks the same as last visit which is pretty much the best we can hope for. No better, no worse. He did confirm that a portion of the liver is herniated up which he suspected last time. He also said that my amniotic level is a little higher than average but that is considered "normal" for CDH babies because they are unable to effectively swallow and recycle the amniotic fluid. At this time Dr Gray said it was not a concern and that he would continue to monitor both baby and I via Dr. Feuerbacher. He said it was also unnecessary to come back every two weeks to Kansas City for my prenatals because of how far the drive was and how well both baby and I are doing. And yes baby girl reed did not behave herself again yesterday. She was moving around so much and doing summer salts the whole time. I am assuming that is why the ultrasound was so short this time. Both the ultrasound technician and the Dr. asked me if she moved that much all the time- ABSOLUTELY! I guess she will have time to sleep after she is born because she shirley doesn't seem to now. Dr. Gray said she is weighing in at about 3lbs 8oz so that is great news- she is really growing! We didn't ask about the LHR (lung head ratio) partially because it doesn't matter and because she wasn't being very cooperative we figured they probably couldn't get a good shot of the lung.

We also discussed the possibility of induction, trying to nail down a date when he thought it would be a good time so we can start planning some things- basically the longer I can keep her "baking" the better. Her chance for survival and a good prognosis depends on how big she is and how long her lungs ( what little lungs she does have) have to develop. Basically he said that we could talk about it at the next appointment but he would like to see me go to at least 38 weeks. I guess Brian and I are just scared that since we live so far away, we don't want to risk having her anywhere but at St. Lukes. As for now, no induction date. Dr. Gray just told me and baby to stay boring and not do anything too fun. I told him not to worry- I wont.

After the appointment we stopped by to see Kevin and Kathy Melcher at Children's Mercy, there baby Kinley who also has CDH was born about 2 and a half weeks ago. She was supposed to have her surgery yesterday to repair her diaphragm, but they got "bumped" because of some emergency surgeries. We had a nice visit with them, but made it short so they could get back to their little girl. She has been on ECMO for the last two weeks and will go into surgery hopefully today on ECMO. Please send up some extra prayers for Kinley and her family today as they are on an "emotional roller coaster" There is a link to their blog site under CDH Babies on the right hand side of the page if you want to check it out.

Also, we want to thank everyone for the awesome support and wearing the CDH wristbands, we still have a few to give out but don't have too many left. Thank you also to everyone that has sent notes, cards and prayers, they are much appreciated and keep them coming. It is unbelievable how a positive comment really brightens our day.

Wristbands are HERE!

2008-06-12T16:16:00.000-07:00

Thursday June 12, 2008- 29 weeks 4 days

While taking a nap this afternoon after working last night I heard someone at the door. Brian answered it and it was our Wristbands- I ordered them about 2 weeks ago for our friends and family to wear to show support for not only our baby girl but Brian and I. I know I am officially a nerd, but I am really excited to see all our friends and family wearing the turquoise wristbands. We are going to try our best to try to hand them out whenever we see everyone and are planning on mailing some out to those we don't get to see as often as we want. I am super excited and even put one on Gabby for a little collar (evidence that I am really a dork). A little FYI if anyone wants one that we don't see very often- just leave a message on the blog and I will be happy to mail them out since they weigh practically nothing. Also, this way we can spread the word about CDH Awareness and get our website out to anyone that doesn't have it ( it's on the back of the wristband). OK well get excited to proudly wear turquoise (oddly enough it's the same as our wedding color) Yikes my dorkeyness is even amazing me. I will stop now before I scare people off.

P.S. All the "cool" kids will be wearing one so don't be left out! Let us know if you want one!

I Passed!

2008-06-05T12:05:00.001-07:00

June 3, 2008- 28 weeks 3 days

This morning I had my glucose tolerance test. This is to test for gestational diabetes. It requires fasting for 8 hours before the test and me being so smart and trying to save gas decided that I would just do it this morning after work (bad idea). I had no idea how hungry and thirsty I would get not eating or drinking anything after midnight considering that I usually eat at 2am and drink way more caffeine that I should. By 8 am when I had to drink my 50 grams of glucose I was practically starving. My appointment wasn't until 9 am so I waited in the waiting room for that hour between the time I got off work and the appointment. Sitting there I could start feeling myself getting nauseated and our little girl started to get worked up. I guess the sugar hit her little system pretty hard because she was moving around so much, which made me feel even more nauseated.

At theses regular scheduled appointments I get my weight, blood pressure and the babies heart rate taken. All which were fine, no signs of pre-eclampsia (high blood pressure). My blood draw was a little difficult, hence I was a little dehydrated, but in the end they got it after I told them where my best vein was. Like always I visited with Dr. Feuerbacher about what was going on, when my appointments were and how we had been getting along. He is always concerned not only about me medically but Brian and I emotionally, which is a really supportive. He had a Med student with him so we talked a little bit more about it, but thankfully Dr. F. had already briefed him on me and the baby. I was worried that we just started talking about everything and were leaving him out (oops!), but that wasn't the case.

Baby Girl Reed was extremely active hence she was on a sugar high and it took longer than usual to find her heart rate which was fine 145- I think. Dr. F. also took my measurement, right on track at 28 sonometers, wheew- it seems like my belly is getting really big. By this time It was about 9:45 and I was getting pretty tired and hungry so I told everyone that I had better get going, scheduled my next appointment (in 2 weeks) and went and got some Mc Donald's. I told my nurse not to call with the test results since I was going home to sleep and that I would just check the results at work that night.

June 4th/5th- I almost forgot to check my test results since work was so crazy last night. I feel like I ran a marathon this afternoon. Either way around 3 am I logged on and I PASSED! My glucose was 85 (really good!) as long as it is below 140, that indicated normal pancreas function. I also had a hemoglobin and hematocrit drawn to check for anemia. Both were slightly low, but probably not much to be concerned about. Maybe I will have a nice juicy steak for supper to help boost my numbers.

Wow that seems like a lot for a routine 1 hour check-up but it has been a while since I posted. Brian has been staying busy with the roads and softball games. His team won on Tuesday against their rivals so that was nice. Unfortunately I haven't been to too many games, but I guess they can win without me there (darn I was sure I was their good luck charm). I have pseudo been studying for my NCLEX which I am taking at the end of June since that was the first available time. I really need to get motivated to buckle down and study some more.

Okay I will stop babbling- Thanks for all the thoughts and prayers especially from our communities I recently found out that we are on several prayer lists which can hurt. Keep the support coming. Soon everyone will be able to show their support, I ordered CDH Awareness wristbands to support our growing baby girl. When they get in Brian and I will be passing them out for our friends and family to wear. I will keep everyone posted on their arrival since I am super excited about it, but then again Brian says I am a nerd- oh well. Next KC appointment is in 2 weeks, so unless anything "exciting" happens I will plan on updating then.

Keeping all other CDH families in my thoughts and prayers. These little miracles are really one way that God shows us that the very best things in life are worth waiting and working for. I can't wait to meet our baby girl. Thanks again for the posts, thoughts, prayers, and cards. The support is overwhelming and much appreciated!

Little Kick Boxer?

2008-05-28T21:31:00.000-07:00

Is our little girl going to be a kick boxer? She is kicking and moving around all the time. I am now working nights at the hospital and she is so active starting around 1 am and continues until around 4 am! Then when I go home to try to get some sleep, she starts in again around 11 and continues into the afternoon, when does she ever sleep, God knows she doesn't let me sleep too long. I have been in awe of how much she moves around in there, it is so great to feel her moving all the time and you can actually see my belly "jumping" up and down from the outside. Hopefully this is a great sign of a strong willed baby girl, which I know she will be.

Still thinking about names, but nothing confirmed yet. Brian and I can't agree on one, who knows we might not know until she is born. Not much else, just working and trying to get some rest. We are still doing a lot of research on CDH and have been watching some of the other CDH babies blogs very close including the two babies that are currently at Children's Mercy. Sofie is getting ready to go home (we met her and her dad on our tour of the NICU) and now Kinley is in the NICU and doing well (only 2 days old!). The stories of other parents that have been going through the same thing is so reassuring and provide us with hope and positive attitudes that CDH can and has been beat! Thank you to everyone who has left comments on our blog, sent cards and the positive phone calls, they all mean so much and the continued support will help us stay in good spirits until we finally get to meet our baby girl. Keep the thoughts and prayers coming for not only our baby but the other families and babies battling with CDH.

Decision's Made

2008-05-20T10:43:00.000-07:00

May 19, 2008- 26 weeks

I talked to Ashley this morning about what Dr. Gray had intended with the website, she said the Dr. Gray just wanted us to have as many options as possible. He thought that we might meet the qualifications for the fetal surgery but it wasn't that he thought that St. Luke's and Children's Mercy in Kansas City couldn't handle our situation, which is what I had thought in the beginning. After he saw that the liver had possibly moved up and the LHR was down from the previous ultrasound, he just wanted us to know all of the possibilities and didn't want us to feel like he was keeping anything from us that we might want. Ashley said that she could have Dr. Gray call us and talk to us further about it, but I let her know that after much discussion, Brian and I decided that this was not a real option for us. First off, they can never guarantee that insurance will pay for the procedure, especially with how picky my insurance is ( I have a HMO through St. Joseph and they are very specific on where they will pay) and second there is not enough research and evidence that says that this will really benefit our little girl. Also, it can be difficult on the mom and any fetal surgeries can lead to preterm labor that cannot be stopped. We have just decided that we are going to stay in Kansas City and whatever happens, happens. We trust that the doctors in Kansas City will do all they can for us. We will just keep praying that we are doing what is best for not only our baby girl but for Brian and I.

What's an Online Consultation?

2008-05-20T10:19:00.000-07:00

May 16, 2008- 25 weeks 5 days

Today Ashley, the fetal-maternal coordinator at St. Luke's who has been helping us set up appointments and coordinating cares between St. Luke's and Children's Mercy, called and let us know that Dr. Gray wanted us to know about a website for a hospital that does online consultations. She wanted Brian's e-mail address and let us know the website that he wanted us to look for. I went to the website while Brian was at work and was shocked to see what I did. It was a fetal surgery site. Now if I remember correctly the doctors previously said that we were not a good candidate for this kind of surgery. I looked all over the website for the University of San Francisco and found out that they perform these somewhat controversial surgeries while the baby is still inside of me. As I navigated the site further and filled out the online application form which is free, but they charge 575 dollars to process it, and basically you don't know if you are approved or not. Further I would have to stay in California for 4 weeks by myself while they monitor the baby and I! In all this I never saw any statistics about how the survival rate is increased or how the quality of life after birth is improved. Also, I would have to have a Cesarean section because the cuff that they put on the trachea would have to be removed before the baby could take her first breath. This all seemed pretty scary to me, and for what reason. We didn't even really know if Dr. Gray just wanted us to have the information or if he thought that it would be a last resort for us to look into. I called Ashley back after I had navigated the website for over an hour and asked if she knew why Dr. Gray had wanted us to visit the website and she said that she had done some looking on it too and she was confused herself. She said that they had only sent one couple on for Fetal surgery and it was a cardiac patient. She said that she will call me back on Monday and let me know what Dr. Gray's intentions were. So much to consider, but we'll see. The website is: http://fetus.ucsfmedicalcenter.org/cdh/, maybe I just missed where they stated the increased prognosis and odds of survival, who knows.

ECHO and Childrens Mercy

2008-05-19T14:21:00.000-07:00

Looks like a Vorthmann nose to me!
Heart on the Right Side - Stomach on the Left.

May 14, 2008- 25 weeks 2 days

1:00 today we went to meet with the coordinator at Children's Mercy in Kansas City and to meet the surgeons that will be performing surgery on our baby girl after she is born. We had a pretty hard time getting past the security guards at the front doors, but after that everyone was so nice. We met with the ECMO coordinator. ECMO is a kind of life support that babies with CDH sometimes have to go on if they are unable to oxygenate their blood enough by themselves ( which is my biggest fear). I have seen other babies on ECMO and the site is very sad to say the least. Anyways we will deal with that if we have to. The surgeon that we met with was very nice but made it a point to tell us over and over that they would not know how long it would be before she would have her surgery. That would be a day by day judgment call made by the surgeons and the neonatologists. He said that surgery is not the main focus, keeping the baby stabilized and oxygenated was. Surgery can wait and it could be up to a few weeks before she would be ready for the surgery.

We toured the NICU to see where she would be going as soon as she was transfered from St. Luke's since I cannot deliver at Children's Mercy, the baby will be transfered within about 2 hours after birth to Children's and I will have to stay at St. Luke's until I am stabilized, but that they do offer passes for moms to come over and see their babies as soon as it is determined that the mom is stable. At the NICU we met Sophia, a baby with CDH that was going to be soon going home from the hospital . She had been in the NICU for almost 2 and a half months, but looked so cute and seemed to be doing well. Her dad looked at Brian and said, "It's a long road, but it is so worth it"

2:45 and now it's time for the ECHO, to determine if there is any heart abnormalities that can be determined before birth. This is where they look at all the chambers of the heart and all other anatomy of the surrounding arteries and veins coming into and leaving the heart. This was yet another type of ultrasound. I guess the spicy chicken salad I had for lunch was a bad idea, because our little girl was on the move. She was kicking and punching and would not stop moving. They got most of the pictures that they needed but not all of them because she wouldn't really cooperate. Hope that is not a precursor of how she is going to be when she gets older!

Once again we were led to the "Crying Room" to discuss the results with the doctor. A cardiac perinatologist came to discuss what he had seen. He said that the ECHO showed a strong 4 chamber heart (good!), all vessels entering and leaving the heart in a normal manner (great!) and that the patent ductus arterosis PDA and the foramen ovale were both present and functioning (greatest!). Basically these two shunts are necessary during fetal life but close once the baby is outside of the mother. We just got as normal of an ECHO as possible which is the best we could hope for.

We took a quick tour of where I would be delivering (all the way at the end of the hall by my self in a huge room where there was enough space for the 12 or so doctors and nurses that would be there during the delivery) and the NICU where the baby would go until stabilized enough to be transferred to Children's Mercy. They said that as soon as she is born that they will call the Children's Mercy transport team to come get her, and they would stay at her bedside helping until she was stabilized enough to be transported even if it took 5 or 6 hours. They said that their transport team was one of the top the nation, and that Brian would have to follow right behind the ambulance to do paperwork at Children's Mercy, leaving me behind at St. Luke's.

During our walk through, Dr. Gray who had also looked as the ultrasound came to give us some more news. He said that it looked like on this ultrasound that the liver was indeed "up" (aka-super bad news), and the the LHR was 1.2. Wow, in a day of highs, this was an extreme low. These were both really bad bits of information. Things aren't looking as good as they were when we had walked in the door. Also, Dr. Gray said the the LHR the low level was 1.4 instead of what we had been previously told of 1.0, so I will have to research that more to determine what is right. He said that he wanted us to come back for another ultrasound in 3-4 weeks to make sure that she was growing, which she was she is up to 2lbs 2 oz. I couldn't believe how big she had gotten in 3 weeks. At the last ultrasound in Kansas City she weighted 1lb. 4oz. so she gained almost a pound! Also, they have been monitoring my amniotic fluid level, which can sometimes get high because the baby is unable to swallow the amniotic fluid as well because of the displaced stomach and bowel, but today my level was within the normal level.

Discouraged we made another appointment for June 18, 2008. Of course we were both frustrated because we had not thought that things would change so much in 3 weeks, but I guess, as the baby grows, so does the diaphragm in proportion, allowing a larger opening, and thus possibly the reason the liver looks like it is up. Brian and I decided the the LHR might be a little bit of a judgment call by wherever the click of the mouse is on the ultrasound picture, because it is so blurry and she was moving so much...hopefully this isn't going to be the standard, lower LHR and worse news each time we go. Another long trip home from Kansas City to say the least.

Regular Scheduled Check-Up

2008-05-19T14:07:00.000-07:00

May 7, 2008- 24 weeks 2 days

I am still going for my regularly scheduled checkups with Dr. Feuerbacher. He was initially going to help deliver my baby at St. Francis but that is long since passed. It is imperative that I deliver at a Level III tertiary facility. That means that they have all the equipment necessary when the baby is born. As soon as she is born they are going to put a tube down her trachea and intibate her so she doesn't swallow any air into her stomach with her first breath. Then they will put a nasogastric tube in her nose to remove any air or stomach contents so her little stomach will stay as small as possible to give the lungs as much room as possible to inflate (since that is the biggest concern with CDH, the lung development).

Everything went well at the regular appointment. My urine test looked good, no UTI. Her heart rate was 146 which is about what it usually is. She runs between 138-147, which is in the normal range. Dr. Feuerbacher measured my belly, which is really growing. I am measuring about 25 which is right on track for how far along I am. I feel like my stomach his HUGE but everyone assures me that I am not and that I look so cute. I am starting to see it more and more, although it seems like at about 22 weeks I woke up on morning and had a volleyball in my stomach that wasn't there the night before! Still gaining weight, of course. I feel like i am going to Weight Watchers to weigh in every time I go to the doctor, but haven't done bad so far. Definitely not going to stay under my goal of 20 lbs, since I have gained 16 lbs already!! Oh well as long as the baby is growing, I will deal with the weigh after she is born!

I go back to see Dr. Feuerbacher in 4 weeks, and it is at that appointment that I will have to do my glucose tolerance test. Basically I have to drink the nastiest orange drink on an empty stomach to determine if I have Gestational Diabetes, which could lead to preterm labor which we don't want. We need her to stay in the oven as long as possible to give her little lungs every chance to grow as they can, but don't want to wait too long that I go into labor in Maryville, oh the tight rope we walk. Not too early, not too late. Still contemplating plans of bing induced a few weeks early at St. Luke's just to ensure it is a controlled environment and no suprises, but we will find out at a later date.

The Complete Results

2008-05-19T13:56:00.000-07:00

May 6, 2008- 24 weeks 1 day

Once again I was off to school and Brian off to work. We were supposed to get the full amniocentesis results on Monday but since it was a weekend when we had the initial amniocentesis that it was going to take additional time to get back the full results. The test that we were waiting for was the results to determine if our baby had a very rare autosomial recessive disorder called Freyn's Syndrome which has been linked in babies that have CDH. Usually these babies have other physical abnormalities, but the genetic nurse counselor said that she had seen one other patient that everything looked good on the ultrasound besides the CDH defect and it came back Freyn's Syndrome. This syndrome is not compatible with life and all of our children in the future would have the same syndrome. This was the absolute worst case scenario. We had been praying so hard that this was not the case.

We had to wait until Tuesday afternoon for the results. The genetic nurse counselor didn't call until 4:20 and gave us the results. That the amniocentesis came back 100% normal with no genetic abnormalities what so ever. I was so elated. I immediately called Brian and let him know the news. We were so excited to be done with all the genetic waiting. It had been so hard on us, all the worrying that our baby may never be able to survive no matter how much we did. God was defiantly listening to our prayers. Now just waiting to go to the fetal ECHO to determine any heart involvement, which is pretty commonly associated with the CDH defect. Keeping our fingers crossed until then.

What a long weekend

2008-05-19T13:10:00.000-07:00

April 28, 2008- 23 weeks

Monday morning and I am off to school as usual and Brian is off to work. Both of us with so much on our mind, the weekend had been in anticipation of today and the inital resluts of the amniocentesis. I had a test that morning that I didn't study for because I wasnt able to concentrate at all that weekend as we had gone to Iowa and told my parents the news. The genitic nurse counselor said that she would call us Monday morning with the results of the chrosome matching. What we were looking for was that all chromosomes had a match and that there were no triplet chrosomes also known as trisomy deformities. These are Trisomy 13, 18, and 21. These were our worst nightmare and were not compatible with life.

At 10:00 I called Brian and asked if he had heard anything yet, since they were going to call his phone instead of mine since I would be in class all day. He said not yet, but he would let me know as soon as he did. The next hours were torture. I was eating lunch at 12:30 and decided to call once agin, and again he had heard nothing but would call when he did. I appologized for calling so much while he was working but I just needed to know. Brian said he loved me and would call just as soon as he got off the phone with anyone with any news.

1:03 the phone rang and I got up and left in the middle of class (which i absolutley hate when people do, but at this point didnt care) and Brian gave me the news. All chromosomes are matched 1:1 and it is confirmed that it is a Girl! Oh My God what a releif. At least we knew that there would at least be a chance for her to make it. We talked a little bit longer and continuted our days eager to spend the evening celebrating or first hurdle avoided, but the lingering tests that would not be confirmed for at least another week were in the backs of our minds.

It's a Girl and CDH

2008-05-19T12:32:00.000-07:00

Arms!

Sucking my Thumb!

Look at my Cute Face!

April 25, 2008- 22 weeks 4 days

What an early morning, we had to be in Kansas City at 8:00 which is a 2 hour drive from our house so we had been up since about 4:30 that morning. We were both really nervous by this time wondering what the day would reveal. Of course we got to St. Luke's early and had no idea where to go so I called someone I knew from work who had also gone to St. Luke's for her ultrasounds and told us that we needed to go to the Peet center. We found it, valet parked and began the registration process. We finally got to start the ultrasound at about 8:45 and of course I had to have a full bladder, it felt like I hadn't gone for hours. The person performing the ultrasound was a RN and she was so nice. She was taking pictures and measuring different things making conversation with us and she asked if we wanted to find out the sex. I looked over at Brian and said only if there is something wrong. She continued to take measurements and pictures and I could see that she was focusing on the chest area. She asked again and I said that Brian could decide that it didn't matter to me. He said the same thing, that if there were any problems that we wanted to know the gender.

That is when she looked over at us, placed her hand on mine and said "there is something very wrong with your baby, but she's a Girl." I was so devastated and excited at the same moment. I had secretly been wanting a girl whereas Brian wants at least one boy. My thoughts raced and I squeezed Brian's hand harder than before. She continued her measurements and kept taking pictures and told us that the doctor would be in in a minute to continue the ultrasound.

The doctor came in and began to look at the pictures the RN had taken and went ahead and began his own ultrasound research. He then revealed to us the our baby had a Diaphragmatic Hernia. That basically means that part of the diaphragm is missing and the the stomach contents have moved up into the chest cavity where the heart should be and the heart has shifted over to the right side. Right away I knew that this was horrible news. The doctor finished up his part of the ultrasound and escorted us to what I called "The Crying Room"

Brian and I sat in the room for what seemed like forever waiting for the doctor to discuss the results. Then walked in a Geneticists, she asked us a lot of questions about our medical history and the medical histories of our families. Because this defect can be linked with several chromosomal abnormalities, she encouraged us to have an amniocentesis to determine any genetic involvement. They told us all of the very worst case scenarios and ultimately gave our baby a 50% chance of survival

The doctor discussed with us the different things that they use to determine the severity of the defect and the chances of survival. He determined that we had a Left sided CDH, which is much better than Right sided as far as prognosis goes. Also, the doctor said that they use a ratio called the Lung Head Ratio: LHR which is a measurement of how well the Right Lung is developing. The doctor told us that they want to see the number at least above a 1.0 and that our baby currently had a LHR of 1.5! How reassuring. Also, at this time the doctor said that there doesn't appear to be any liver involvement which is a good sign that the hole in the defect may be small. To me it sounded like if we could rule out heart involvement and any genetic involvement that we would be doing as well as can be expected. So just have to wait for tests to determine total involvement.

I asked if there was anything that they could do enutero to fix the deformity, but the doctor said that it hasn't showed to be very promising, but there is one surgery that is very risky that involves placing a cuff on the babies trachea to build up pressure in the lungs to aid in expanding them, but the research was based for the very worst cases and that he didn't recommend it and we were actually not good candidates for the procedure.

After we had some time to take it all in and break down and cry for a while, the nurse came in and asked if we wanted to have our amniocentesis today or schedule another appointment for a later date. Of course we wanted to have it the same day to get it over with. Since we were having it on Friday afternoon, the initial results would not be in until Monday and with the final results for 10 days.

We left Kansas City in a daze with a follow-up appointment on May 14, 2008 to have a fetal ECHO to determine heart involvement. They said that I needed to continue to see my primary doctor for my urine tests and for basic appointments, but all other care would be transfered over to the Perinatology team at St. Luke's.

Another Ultrasound?

2008-05-19T12:10:00.000-07:00

April 15, 2008- 21 weeks 1 day

I was with several of my friends eating in Kansas City when I got a call from our primary doctor's nurse that said the ultrasound didn't show everything that it needed to and that the Radiologist that reads the ultrasounds at our hospital thought that there might be a possibly displaced heart. I was shocked and met with my primary doctor that afternoon after I got back from Kansas City. I discussed it the Dr. Feuerbacher and he said it could be nothing or it could be something but we needed to go to Kansas City at St. Luke's to have a level II ultrasound. I guess that I didn't really think anything of it considering the Ultrasound technician said that she didn't see anything abnormal when she was taking the pictures.

I asked if we could wait until some time in May because I was just finishing up with RN school and had a lot of tests to finish up with and was still working and my schedule was so crazy. He said no that he wanted it to be done as soon as possible to ensure that nothing was wrong. He made an appointment for us to go to St. Luke's on the following Friday. I went home and told Brian the news, but we really didn't think too much more about it and just figured it was an ultrasound error.

Ultrasound # 2

2008-05-19T11:47:00.000-07:00

Side Profile

Open Mouth

Giving the "Thumbs-Up"

April 9, 2008- 20 weeks 2 days! Half Way There!!

We had our second ultrasound to make sure that the baby was growing and that all the organs were in the right spot and working properly. This ultrasound was longer and they took measurements of the size of the baby's organs and made sure that the heart was pumping, the kidneys were working and just do an overall assessment of the baby. I thought my bladder was going to explode but I made it through. The ultrasound tech said that everything looked good but she couldn't detrmine the sex, which was fine with us because we still didn't want to know, well we did, but made it a point to wait until birth.

The 1st Ultrasound

2008-05-19T11:00:00.000-07:00

Side Profile of Head and Body
Butt shot with Legs
My Whole body only 8" long!

February 20, 2008- 13 weeks 2 days

We had our first ultrasound to determine gestational age since we were unable to determine even closely our date of conception. From our estimations, we thought we were about 16 weeks along. After measuring and determining the weight of the baby, it was confirmed that the baby was only about 13 weeks along which changed our due date from August 5, 2008 to August 24 2008 which was a bit of a shock, the only thing I could think of was "that's 3 more weeks of the heat". Everything looked good on the ultrasound. At this point we didn't want to know the sex of the baby, we had always knew we wanted it to be a surprise. We left excited to confirm that there was actually a baby growing inside of me. During this initial ultrasound we could see the baby sucking its thumb and it even had the hiccups!

From the beginning..

2008-05-19T09:25:00.000-07:00

December 20, 2007- 4 weeks 4 days

I am a nurse at St. Francis Hospital in Maryville Missouri, it is really small and had was working the beginning of my 12 hour shift when I knew that I was developing yet another urinary tract infection. So I called down to the clinic to get an appointment with my doctor during my lunch break to get some antibiotics. When I met with Dr. F. he asked me if there could be any way I could be pregnant. I told him that i had went off the pill in October and my husband Brian and I were ''just going to see what happened". He decided to do a pregnancy test, but I had no signs or symptoms so I just figured it was pretty precautionary.

Dr. F. came back into the room a few minutes after I gave my urine sample and said "Congratulations!". I said "I knew it, I can always tell when I have a UTI". To that comment he replied..."Yes you do...but you are pregnant!" Wow, what a shock. I was kind of in a daze considering that I wasn't at all expecting that sort of news. The next challenge was to determine how far along I was. Of course I couldn't remember the date of my last menstrual cycle, so we just made an educated guess and thought I was about 7 weeks along. Later that afternoon I called Brian and let him know the news, we were shocked but so excited!