An addict in need of a "Fix"

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

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

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

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

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

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

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

oops, forgot to tell the dogs

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

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

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

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

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

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

When Life Gets Too Hard To Stand...Kneel

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

When Life gets too hard to Stand...Kneel

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

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

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

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

Sweet Elli-

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

Angel Elli's Mom

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

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

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

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

Angel Wings

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

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

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

Now What...

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

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

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

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

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

Driving Directions

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

Price Funeral Home

120 E. 1st Street

Maryville Missouri

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

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

St. Paul's Lutheran Chruch

12 Park Street

Treynor Ia

712-487-3880

St. Paul's Lutheran Cemetary

Driving directions from Maryville:

North out of Maryville to Hwy 71

Continue North on Hwy 71 North of Braddyville Ia

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

Turn North (Right) onto Hwy 59.

Continue North on Hwy 59 to Carson Ia

Head West on Hwy 92 towards Treynor.

Travel through Treynor past Casey's approx 1 mile.

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