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.

Day 19

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.