tag:blogger.com,1999:blog-67061330938161195492024-02-19T04:01:44.311-08:00Angel ElliPictures and updates of our baby girl, diagnosed with Congenital Diaphragmatic Hernia on April 25, 2008. Born August 19, 2008 at 2:58 in the afternoon. Elli endured 4 surgries, spent 11 days on ECMO, battled through pulmonary hypertension and right sided heart failure. Elli earned her Angel wings on September 8, 2008 in her loving mothers arms. She was such a fighter and never gave up. You will be forever missed baby girl.Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.comBlogger90125tag:blogger.com,1999:blog-6706133093816119549.post-83888905593376136132009-08-19T10:25:00.000-07:002009-08-19T10:42:00.650-07:00One yearElli, <br /><br />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. <br />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. <br />just leaving you a note to tell you happy birthday little one. <br /><br /><br />Loving and missing you ,<br />Breathe easy<br /><br />Mommy and daddyBrian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com0tag:blogger.com,1999:blog-6706133093816119549.post-29663847455485003002008-12-17T14:54:00.001-08:002008-12-17T15:48:20.574-08:00Long Overdue<div align="center"><span style="font-family:georgia;">Hello Everyone!</span></div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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 </span><a href="http://www.blogger.com/www.cricut.com"><span style="font-family:georgia;">Cricut Expression</span></a><span style="font-family:georgia;">, 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....</span></div><div align="center"><span style="font-family:georgia;">Our family is a Circle of Strength and Love,</span></div><div align="center"><span style="font-family:georgia;">with every birth and Union the circle grows,</span></div><div align="center"><span style="font-family:georgia;">with every death and crisis faced the circle grows stronger. </span></div><div align="center"><span style="font-family:georgia;">Or this one....</span></div><div align="center"><span style="font-family:georgia;">Home is where you can be silent and still be heard</span></div><div align="center"><span style="font-family:georgia;">Where you can ask and find out who you are</span></div><div align="center"><span style="font-family:georgia;">Where people laugh with you, about yourself.</span></div><div align="center"><span style="font-family:georgia;">Where sorrow is divided, and joys multiplied</span></div><div align="center"><span style="font-family:georgia;">Where we share in love and grow. </span></div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">Love Brian, Cassi and Angel Elli</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com28tag:blogger.com,1999:blog-6706133093816119549.post-41482734007259471352008-11-06T18:31:00.000-08:002008-11-06T19:11:20.895-08:00Too Much Too Soon?<div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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-</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com31tag:blogger.com,1999:blog-6706133093816119549.post-50413139188799570682008-11-03T19:51:00.000-08:002008-11-03T20:28:33.524-08:00Reed Family Update<div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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). </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com12tag:blogger.com,1999:blog-6706133093816119549.post-64848959274896528812008-10-26T20:27:00.000-07:002008-10-26T20:39:03.499-07:00Woo Hoo!!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. <br /><br />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.Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com19tag:blogger.com,1999:blog-6706133093816119549.post-3533259218497377972008-10-24T12:51:00.000-07:002008-10-24T13:10:41.793-07:00My Country Song<div align="center"> </div><div align="center"><span style="font-family:georgia;">TRIGGER IS MISSING</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">FYI he is wearing an apron from when I used to be a waitress</span></div><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-s-4P5gegsjkUHDO4GSNUfZ3_V3QWFMSkgpF7pfpqO11_W3Zl7Xial5IH_b6gBpSgY5jy_QpoSGIeM6gXIu6rJfxknSC7Zd6tgabSXvNPGaIh2Aa9dNEFvsI9FRWcc0lO7wlEQWSZNTE/s1600-h/Us+pictures+only+001.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5260810825741059026" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-s-4P5gegsjkUHDO4GSNUfZ3_V3QWFMSkgpF7pfpqO11_W3Zl7Xial5IH_b6gBpSgY5jy_QpoSGIeM6gXIu6rJfxknSC7Zd6tgabSXvNPGaIh2Aa9dNEFvsI9FRWcc0lO7wlEQWSZNTE/s400/Us+pictures+only+001.jpg" border="0" /></span></a><span style="font-family:georgia;"><br /></span><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com19tag:blogger.com,1999:blog-6706133093816119549.post-49443371909523692932008-10-21T18:48:00.000-07:002008-10-21T20:05:11.779-07:00Shoot...Miss TMI<div align="center"><span style="font-family:georgia;">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!</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjABsE_WIMSDIAYncqWYmdBoxAAGrr6jvuyPikhpF-MQfBdz95CA-XsGFwK_yTwyTd0zSCxsJm84c8LgFlnNgS1IFpLnB5hYH5kJ1SaAr9EtzYq6KzVEIwsctCpvO1QTDBSAp0QRXo0Iao/s1600-h/Angel+Elli.JPG"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5259790537602635410" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjABsE_WIMSDIAYncqWYmdBoxAAGrr6jvuyPikhpF-MQfBdz95CA-XsGFwK_yTwyTd0zSCxsJm84c8LgFlnNgS1IFpLnB5hYH5kJ1SaAr9EtzYq6KzVEIwsctCpvO1QTDBSAp0QRXo0Iao/s400/Angel+Elli.JPG" border="0" /></span></a><span style="font-family:georgia;"> 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.<br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZLqCuhzaHxtYK1puYcZyqPn6avxiWc30j0owVyNk2AsvcQuFmgIj7TXK1cIxKQO6i5bhb5UBK32RzRfJFkN74dToNi-pQQ_fSiOLXkZl5qvct02gvj08bZUhpiw4ZH-aeDvrGL9gB_70/s1600-h/IMG00101.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5259790547244195410" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZLqCuhzaHxtYK1puYcZyqPn6avxiWc30j0owVyNk2AsvcQuFmgIj7TXK1cIxKQO6i5bhb5UBK32RzRfJFkN74dToNi-pQQ_fSiOLXkZl5qvct02gvj08bZUhpiw4ZH-aeDvrGL9gB_70/s400/IMG00101.jpg" border="0" /></span></a><span style="font-family:georgia;"> We got this praying Angel from my parents, we picked it out because we thought it looked so innocent just like Elliott was.</span></div><div align="center"><span style="font-family:georgia;"><br /></span></div><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGBNosVmuNS7jxxxyBVgL2mL-0VskRWG4u-FEhQj-O6uTFuTCpivh2XkRYjSinsDwdMg3gkOVkeL046aEY8BBn-DlT1ddO3RDqdm9sYz7i9qxP7DLf-f6-XPmFdLQ-tVZ3IhCaji0ZLus/s1600-h/IMG00078.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5259790182101010482" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGBNosVmuNS7jxxxyBVgL2mL-0VskRWG4u-FEhQj-O6uTFuTCpivh2XkRYjSinsDwdMg3gkOVkeL046aEY8BBn-DlT1ddO3RDqdm9sYz7i9qxP7DLf-f6-XPmFdLQ-tVZ3IhCaji0ZLus/s400/IMG00078.jpg" border="0" /></span></a><span style="font-family:georgia;"> 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!</span></div><span style="font-family:georgia;"><div align="center"><br /></div></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF-eg5k0TurI6uOK5K8sPAMO4gpJs7uEvXxW6s-p34BCQGOUnzpVTWZOzqelpYShcsOP_vQztCGzs0Btyx2cYfx-b5dbzeXGbcBFFjjqvz3ifTGApWDNLmBUjlr6sPHGx4fzpxGsuaw7o/s1600-h/IMG00090.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5259790192274806178" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF-eg5k0TurI6uOK5K8sPAMO4gpJs7uEvXxW6s-p34BCQGOUnzpVTWZOzqelpYShcsOP_vQztCGzs0Btyx2cYfx-b5dbzeXGbcBFFjjqvz3ifTGApWDNLmBUjlr6sPHGx4fzpxGsuaw7o/s400/IMG00090.jpg" border="0" /> <p align="center"></span></a><span style="font-family:georgia;">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. </span></p><div align="center"><br /></div><p align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd7JPxXuYVpSQGuhV4XRtZwkeVrMELOd7puErTT-vyxFotN4AUXPKWbExrggeb3X9b6syY4iW_7gYTTGZO3sz8_X1DpJSni3KM-NfI7h1XeF0tDCjyZ5aznrLM8HeskCIZ28_nEjj5OxY/s1600-h/IMG00091.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5259790193353356098" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd7JPxXuYVpSQGuhV4XRtZwkeVrMELOd7puErTT-vyxFotN4AUXPKWbExrggeb3X9b6syY4iW_7gYTTGZO3sz8_X1DpJSni3KM-NfI7h1XeF0tDCjyZ5aznrLM8HeskCIZ28_nEjj5OxY/s400/IMG00091.jpg" border="0" /></span></a><span style="font-family:georgia;"> We also received these two markers from my parents and they were set up at Elli's Visitation. This one says:</span></p><p align="center"><span style="font-family:georgia;">If Tears Could Build A Stairway</span></p><p align="center"><span style="font-family:georgia;">And Memories A Lane</span></p><p align="center"><span style="font-family:georgia;">I'd Walk right Up to Heaven</span></p><p align="center"><span style="font-family:georgia;">And Bring You Home Again</span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWIxLs2IkSHbOvNWWwpvjDGBaU850koEs0EM9QvtaYO5rcpbLzUzoLe8jOPKClo7ejC0L40-JYGSAlzBqPM0yHjdhv-rzQSW8wSHu_3GTvlclbv_alnzyLdQRc8UIZbIzdAvA0rzdTTpE/s1600-h/IMG00092%5B1%5D.JPG"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5259790205755134194" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWIxLs2IkSHbOvNWWwpvjDGBaU850koEs0EM9QvtaYO5rcpbLzUzoLe8jOPKClo7ejC0L40-JYGSAlzBqPM0yHjdhv-rzQSW8wSHu_3GTvlclbv_alnzyLdQRc8UIZbIzdAvA0rzdTTpE/s400/IMG00092%5B1%5D.JPG" border="0" /> </span><p align="center"></a><span style="font-family:georgia;">Our Hearts Still Ache with Sadness</span></p><p align="center"><span style="font-family:georgia;">And secret tears still flow</span></p><p align="center"><span style="font-family:georgia;">What it meant to lose you</span></p><p align="center"><span style="font-family:georgia;">No one can ever know</span></p><p align="center"><span style="font-family:georgia;">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.<br /></span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo7bMuefjv3KwTngVscx8n7ALCydNs-utxWRt9DzqwYTJIWeSwQvB6XZsTQoXykXCp6E-BjMsUZZ2Cdz04zVa2meMbf56GwoTlzOaHWiVOsuvcXAhUSIe3fdBf4P1_MpcHDe9txmzBf7s/s1600-h/IMG00100.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5259790212518489858" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo7bMuefjv3KwTngVscx8n7ALCydNs-utxWRt9DzqwYTJIWeSwQvB6XZsTQoXykXCp6E-BjMsUZZ2Cdz04zVa2meMbf56GwoTlzOaHWiVOsuvcXAhUSIe3fdBf4P1_MpcHDe9txmzBf7s/s400/IMG00100.jpg" border="0" /> </span><p align="center"></a><span style="font-family:georgia;">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.</span></p><p align="center"><span style="font-family:georgia;">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)</span></p><p align="center"><span style="font-family:georgia;">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)</span></p><p align="center"><span style="font-family:georgia;">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.</span></p><p align="center"><span style="font-family:georgia;">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.</span></p><p align="center"><span style="font-family:georgia;">~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<br /><br /></span></p>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com17tag:blogger.com,1999:blog-6706133093816119549.post-87300336315786309552008-10-09T18:52:00.001-07:002008-10-09T19:04:25.070-07:00CDH News<div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb-ZbUT20QBA2Ciu1BoknCQNcy-VI6PlfbbshQhIPZiuERsJx_urGpguTKgW9cpvFNUmL1wmWuoRTNrTghr9TfU43r3I9BRUAmpquo554ACdP_zDxMD7xHMwND4h95kVE4LlWFmrDxGYc/s1600-h/elli's_pumpkin%5B1%5D.JPG"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5255339271932582210" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb-ZbUT20QBA2Ciu1BoknCQNcy-VI6PlfbbshQhIPZiuERsJx_urGpguTKgW9cpvFNUmL1wmWuoRTNrTghr9TfU43r3I9BRUAmpquo554ACdP_zDxMD7xHMwND4h95kVE4LlWFmrDxGYc/s400/elli's_pumpkin%5B1%5D.JPG" border="0" /></span></a><span style="font-family:georgia;">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! </span></div><div align="center"><span style="font-family:georgia;"><br /></span></div><div align="center"><span style="font-family:georgia;">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</span></div><div align="center"><span style="font-family:georgia;"><br /></span></div><div align="center"><span style="font-family:georgia;"></span></div><div align="center"><span style="font-family:georgia;"><br /></span></div><div align="center"><span style="font-family:georgia;">There is a yearly memorial walk in Kansas City called </span><a href="http://www.pumpkinrunwalk.com/"><span style="font-family:georgia;">The Pumpkin Run/Walk</span></a><span style="font-family:georgia;">. 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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com37tag:blogger.com,1999:blog-6706133093816119549.post-77083467429493458332008-10-06T18:59:00.000-07:002008-10-06T19:40:42.987-07:00Just a QuickieHey 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<br /> Henderson, Ia 51541<br /><br />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. <br />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.<br /><br />Hey Sweetie-<br />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 daddyBrian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com10tag:blogger.com,1999:blog-6706133093816119549.post-1397635172431393342008-10-01T11:34:00.000-07:002008-10-01T12:09:30.755-07:00An addict in need of a "Fix"<div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com19tag:blogger.com,1999:blog-6706133093816119549.post-26754179232074224562008-09-25T18:12:00.000-07:002008-09-25T18:44:53.844-07:00oops, forgot to tell the dogs<div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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? </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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 </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com20tag:blogger.com,1999:blog-6706133093816119549.post-72307005380507880962008-09-22T08:28:00.000-07:002008-09-22T09:08:17.226-07:00When Life Gets Too Hard To Stand...Kneel<div align="center"><span style="font-family:georgia;">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....</span></div><div align="center"> </div><div align="center"><span style="font-family:georgia;">When Life gets too hard to Stand...Kneel</span></div><div align="center"> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">Sweet Elli-</span></div><div align="center"><span style="font-family:georgia;"> 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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com30tag:blogger.com,1999:blog-6706133093816119549.post-34505531321772222332008-09-19T18:34:00.000-07:002008-09-19T18:57:09.886-07:00Angel Elli's Mom<div align="center"><span style="font-family:georgia;">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). </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span> </div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com27tag:blogger.com,1999:blog-6706133093816119549.post-5247685948696604592008-09-16T20:20:00.000-07:002008-09-16T20:40:31.881-07:00Angel Wings<div align="center"><span style="font-family:georgia;">Another CDH Angel earned his wings today. After a courageous 29 day battle, <a href="http://kadenmorrowsjourney.blogspot.com/">Kaden Morrow </a></span><span style="font-family:georgia;"> passed away in his parents arms. He amazed doctors, nurses and his parents by his amazing determination and fight. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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...</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com16tag:blogger.com,1999:blog-6706133093816119549.post-57334282091614895912008-09-14T15:15:00.000-07:002008-09-14T15:53:58.727-07:00Now What...<div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">Again thank you for all who have sent your thoughts, prayers, and attended the visitation and funeral. It all meant so much to us. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com29tag:blogger.com,1999:blog-6706133093816119549.post-41767736931095717312008-09-11T15:27:00.000-07:002008-09-11T17:41:07.219-07:00Driving Directions<div align="center">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:</div><div align="center"> </div><div align="center">Price Funeral Home</div><div align="center">120 E. 1st Street</div><div align="center">Maryville Missouri</div><div align="center"> </div><div align="center">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.</div><div align="center"> </div><div align="center">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.</div><div align="center"> </div><div align="center">St. Paul's Lutheran Chruch</div><div align="center">12 Park Street</div><div align="center">Treynor Ia</div><div align="center">712-487-3880</div><div align="center"> </div><div align="center">St. Paul's Lutheran Cemetary</div><div align="center">Driving directions from Maryville:</div><div align="center">North out of Maryville to Hwy 71</div><div align="center">Continue North on Hwy 71 North of Braddyville Ia</div><div align="center">Turn West (Left) onto J-64. Approx 20 miles.</div><div align="center">Turn North (Right) onto Hwy 59.</div><div align="center">Continue North on Hwy 59 to Carson Ia</div><div align="center">Head West on Hwy 92 towards Treynor.</div><div align="center">Travel through Treynor past Casey's approx 1 mile.</div><div align="center">The Cemetary is on the Left Hand 9south) side of Hwy 92.</div><div align="center"> </div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com21tag:blogger.com,1999:blog-6706133093816119549.post-25275152266930056192008-09-10T22:54:00.000-07:002008-09-10T23:56:52.389-07:00Holding Elli<div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNfMarS5TBmuoOrb5QxG-0_t6rqyZEaGYt7yUs4IDw-49bR_dh3h0zjGlbcF_wW4CcFr1hc9OF7J9jDdHtHab281rxHxkf0SpCyXQ_kyGacDEKPCTWsUxQSQBTzNK1oMwPgubiSwDKj3A/s1600-h/elliott+151.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5244643083318338882" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNfMarS5TBmuoOrb5QxG-0_t6rqyZEaGYt7yUs4IDw-49bR_dh3h0zjGlbcF_wW4CcFr1hc9OF7J9jDdHtHab281rxHxkf0SpCyXQ_kyGacDEKPCTWsUxQSQBTzNK1oMwPgubiSwDKj3A/s400/elliott+151.jpg" border="0" /></span></a><span style="font-family:georgia;"> 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.</span></div><div align="center"><span style="font-family:georgia;"><br /></span></div><p align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKCFaSmTz_Yl08S8nfg13OIjRPBzRSRY8KERtTMtnZPdBmU_8kW5KPrc0jdvvRh4lfp2vdosswEq2O4Bb8nFxeRwRmz5CzXOpWUrr2Xlga4fGAa7u27P3wY9ZEz4-NNl_zqQvu84E_2Uk/s1600-h/elliott+156.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5244643087671222290" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKCFaSmTz_Yl08S8nfg13OIjRPBzRSRY8KERtTMtnZPdBmU_8kW5KPrc0jdvvRh4lfp2vdosswEq2O4Bb8nFxeRwRmz5CzXOpWUrr2Xlga4fGAa7u27P3wY9ZEz4-NNl_zqQvu84E_2Uk/s400/elliott+156.jpg" border="0" /></span></a></p><p align="center"><span style="font-family:georgia;"> 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.</span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAZD1152GSXCDTnK1K2fk0eofsA4d90su1VY8bqFT70a1-R9zoNN6L9Wx-QtvjkK6al8ONSkyX2ag1yoUYAYkrTWOLVjaNd7x9Vd2Zph15ODsdskv_j3t1vjHhE11wx-G3gIrdsPWhedA/s1600-h/elliott+160.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5244643092657450674" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAZD1152GSXCDTnK1K2fk0eofsA4d90su1VY8bqFT70a1-R9zoNN6L9Wx-QtvjkK6al8ONSkyX2ag1yoUYAYkrTWOLVjaNd7x9Vd2Zph15ODsdskv_j3t1vjHhE11wx-G3gIrdsPWhedA/s400/elliott+160.jpg" border="0" /> </span><p align="center"></a><span style="font-family:georgia;"> 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.</span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrrf5br5Q_l-qlHAtAj-Nnvl0zWzRIz548neuMRGK-Kln92d0J05q3CdHh5ilxZpySfbBU7LLj_NfmOY-RwTTO9Rs4t0u0STFnYbvGLBt9Dnll_GYFfolwKjYWWFK90_I_3sK-5AF6YvU/s1600-h/elliott+162.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5244643092315128722" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrrf5br5Q_l-qlHAtAj-Nnvl0zWzRIz548neuMRGK-Kln92d0J05q3CdHh5ilxZpySfbBU7LLj_NfmOY-RwTTO9Rs4t0u0STFnYbvGLBt9Dnll_GYFfolwKjYWWFK90_I_3sK-5AF6YvU/s400/elliott+162.jpg" border="0" /></span></a><span style="font-family:georgia;"><br /></span><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"> 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". </span></div><div align="center"><span style="font-family:georgia;"> 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.</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com31tag:blogger.com,1999:blog-6706133093816119549.post-89729775416102175192008-09-08T17:40:00.000-07:002008-09-08T18:56:51.886-07:00Arrangements Made<div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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)</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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.</span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com49tag:blogger.com,1999:blog-6706133093816119549.post-83792504468300429382008-09-08T09:30:00.000-07:002008-09-08T09:46:56.859-07:00We'll Miss You Sweet Baby<div align="center"><span style="font-family:georgia;">Elliott <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Arcile</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">experimental</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">excruciatingly</span> 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.</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com115tag:blogger.com,1999:blog-6706133093816119549.post-9003606452265880222008-09-07T19:13:00.000-07:002008-09-07T19:19:59.290-07:00Day 19<div align="center"><span style="font-family:georgia;">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.</span> </div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com34tag:blogger.com,1999:blog-6706133093816119549.post-74571646201828157842008-09-06T21:48:00.000-07:002008-09-06T22:28:36.055-07:00No Changes<div align="center"><span style="font-family:georgia;"></span></div><div align="center"> </div><div align="center">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.</div><div align="center"> </div><div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg08ofSRuvvRVL039hxgc9e7YQO0Pu0Wh9aXo6eUWVjKZWalba_RovJuySv6T5AC6A1Gm2MHKIKzsvcyK2ZUu04J2sjsob6Hvv-A1U2otjdcWdx5JAFMMFAuxEojt2xb3VC0zKegaD1jb4/s1600-h/Us+pictures+only+003.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5243144176144738482" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg08ofSRuvvRVL039hxgc9e7YQO0Pu0Wh9aXo6eUWVjKZWalba_RovJuySv6T5AC6A1Gm2MHKIKzsvcyK2ZUu04J2sjsob6Hvv-A1U2otjdcWdx5JAFMMFAuxEojt2xb3VC0zKegaD1jb4/s400/Us+pictures+only+003.jpg" border="0" /></span></a><span style="font-family:georgia;"> </span></div><div align="center"><span style="font-family:georgia;">Oh yah we, or at least I miss Gabby our cat too!<br /></div></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGUZg14_hbB_6Smk9kJtMhQA6gRDkE9X_dd1JVFiU9JQp02siZ5XkHKpWq48WWU4pmsmh1pDfW4608kvsXnJR-crJt1m9JEvOABh-iXJXKfxzTLkVpnyim3TlxInxqYfJrzkz_S3vu9nE/s1600-h/cute+gabby+2.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5243144184548785330" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGUZg14_hbB_6Smk9kJtMhQA6gRDkE9X_dd1JVFiU9JQp02siZ5XkHKpWq48WWU4pmsmh1pDfW4608kvsXnJR-crJt1m9JEvOABh-iXJXKfxzTLkVpnyim3TlxInxqYfJrzkz_S3vu9nE/s400/cute+gabby+2.jpg" border="0" /></span></a><span style="font-family:georgia;"><br /></span><div align="center"></div><br /><div align="center"><span style="font-family:georgia;">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.</span></div><br /><span style="font-family:georgia;"></span><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_y_dnYDxRJWK0EbM23uQ1Z4kyDZXZsO53njzTOQhu0hcU9rReD7lKbL-PjRZk-I9ERTXVtVvpXn58UqaS2FnNEfOaJiMyjX73SHSdakPl3I8qiPQHftV517OgqWU-2-6lAPFA_JTrLLs/s1600-h/elliott+146.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5243140073215970770" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_y_dnYDxRJWK0EbM23uQ1Z4kyDZXZsO53njzTOQhu0hcU9rReD7lKbL-PjRZk-I9ERTXVtVvpXn58UqaS2FnNEfOaJiMyjX73SHSdakPl3I8qiPQHftV517OgqWU-2-6lAPFA_JTrLLs/s400/elliott+146.jpg" border="0" /></span></a><br /><div align="center"><span style="font-family:georgia;">Her little black belly button is just about ready to fall off. </span></div><br /><br /><p align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh42nhxEARsnChVS5z8e80q3uezc5c02LRRUaglvtj08kyLpciwhHt1KZR4Vv6O2ICtCiNC5AwJyOt6yZza3Y7T2JS7luYwpJJGX5JmdXT1sbpTNiYukYy6sEQdKbcFU6LKjYTIySHbz_k/s1600-h/elliott+148.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5243140079085230338" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh42nhxEARsnChVS5z8e80q3uezc5c02LRRUaglvtj08kyLpciwhHt1KZR4Vv6O2ICtCiNC5AwJyOt6yZza3Y7T2JS7luYwpJJGX5JmdXT1sbpTNiYukYy6sEQdKbcFU6LKjYTIySHbz_k/s400/elliott+148.jpg" border="0" /></span></a><span style="font-family:georgia;"><br />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.</span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqw6qgoyOqyyjYt5tB_gmPsv7CBMLlUjmnEOpVSmCknh9tHI_Z8tEXrJ_UOXMshv0rHK6Mj6DOiFsAziz5yZGd9bZyZgH7wvkplULlzYj1Fbe_MI4YYH6uqJ0WYUlR6j5zYrO4ENkifk4/s1600-h/elliott+150.jpg"><span style="font-family:georgia;"><img id="BLOGGER_PHOTO_ID_5243140088526875938" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqw6qgoyOqyyjYt5tB_gmPsv7CBMLlUjmnEOpVSmCknh9tHI_Z8tEXrJ_UOXMshv0rHK6Mj6DOiFsAziz5yZGd9bZyZgH7wvkplULlzYj1Fbe_MI4YYH6uqJ0WYUlR6j5zYrO4ENkifk4/s400/elliott+150.jpg" border="0" /></span></a><span style="font-family:georgia;"><br /><br /></span><div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><br /></div><div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com14tag:blogger.com,1999:blog-6706133093816119549.post-85477866187878231632008-09-06T12:53:00.000-07:002008-09-06T13:03:55.282-07:00Day 18<div align="center"><span style="font-family:georgia;">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.</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com17tag:blogger.com,1999:blog-6706133093816119549.post-30179859020067771952008-09-06T01:17:00.000-07:002008-09-06T01:19:32.391-07:003:15 Gas<div align="center"><span style="font-family:georgia;">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.</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com15tag:blogger.com,1999:blog-6706133093816119549.post-59199464355038316092008-09-06T00:29:00.000-07:002008-09-06T01:00:48.018-07:00Giving Us a Scare<div align="center"><span style="font-family:georgia;">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. </span></div><div align="center"><span style="font-family:georgia;"></span> </div><div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com7tag:blogger.com,1999:blog-6706133093816119549.post-31726670922183075522008-09-05T15:04:00.000-07:002008-09-05T15:23:36.837-07:00Day 17<div align="center"><span style="font-family:georgia;">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</span></div>Brian and Cassi Reedhttp://www.blogger.com/profile/03095618401843225235noreply@blogger.com12