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.

Holding Elli

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

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

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

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

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

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

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

Arrangements Made

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

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

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

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

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

We'll Miss You Sweet Baby

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