Elliott Arcile Reed

Elliott Arcile Reed
6 lbs 8 oz 19 3/4 inches

Monday, August 25, 2008

Surprise

What a day!! It seems as though we try to get past one day and then we get taken by surprise. Surprise!!! It started off very well with little Elli doing very well, considering the invasive nature of the weekend. She had leveled off last night and the night shift had gotten orders if she did so, to try to wean her off of her Dopamine, which seemed to be the only thing to keep her pressure up. Low and behold they got her completely shut off of it and she has done stellar all day even had her mean raise between 5 and 8 depending on time. Elli seemed to know she needed this.
While Cassi had gone on a trip to pump, as a part of her 3 hour ritual, it gives me some alone time with my little girl. While I was talking to her some of the doctors had came in and were discussing the situation of Elli and ultimately our family. Without Cassi here with me one of the surgeons gave me some important news on his way out of the room. With Dr. A and Dr. C discussing "rounds" their plan of attack for the day. Seeing that I was clearly distressed by what I had heard Dr C asked me to sit and listen. The doctors discussed the events of the weekend, and numbers, a lot of numbers, then Cassi walked in just as she did now so we are doing a computer pass as she types way faster than me.
After much discussion between the doctors and surgeons, and after multiple reviews of Elli's daily x-rays and ultrasounds, the final decision is for little Elli to have her repair surgery while on ECMO. The doctors have discussed the severity of her defect and because it is such a major one, they have ruled out the possibility of weaning her off ECMO before the surgery. Naturally when they told us this, I freaked out thinking that they aren't even going to give her a chance to prove herself. After Brian helped me calm down and I came back to reality, and the doctors explained their reasoning I started to understand. Because of the amount of bowel in her left chest is so great it has caused her heart to shift to the right side. So every time Elli tries to take a breath, her good lung ( right side ) compresses her heart causing it to not be an effective pump. Because the heart and lung are basically in battle for the same area, neither are able to work effectively enough to sustain her life. So even if they did try to wean Elli off ECMO, it would never work. So at this point, having her repair surgery on ECMO is the last and only option.
The risks of doing Elli's surgery on ECMO are very great, but with this being the only option, the surgeons and doctors have decided that Wednesday will be the day. Elli is theoretically not getting any better just lying around on ECMO since there is no plan to wean her off before the surgery, so at this point there is no reason to waste any more time before the repair. Over the next few days the plan is to keep Elli quiet and as stable as possible to prepare her for her surgery. They will be decreasing her Heparin (keeps her blood thin) enough to try to prevent bleeding complications after surgery but keep it high enough so that no clots develop in the ECMO system.
So as for now the game plan is for Elli to have her repair surgery some time on Wednesday, the surgery team is going to meet with us tomorrow to discuss the benefits, risks and possible complications and hopefully set an approximate time, pending no emergency surgeries arise. Elli will move into the adjoining surgery room either tomorrow or very first thing on Wednesday morning as long as everything goes to plan. There is another baby on ECMO in the surgery suite, but he is scheduled for a surgery on Wednesday also, but he will be going to the actual operating room. So after he leaves and the room gets a good scrub down, Elli will be on the move.
Of course this all came to a shock to Brian and I, we were not expecting her surgery this soon. While we knew that she would have to have the surgery some time, it is kind of a double edged sword. On the one hand this surgery will be the only thing that will save her life, but on the other hand we will get some real answers about the severity of the defect, the size or lack there of lungs and their ability to sustain life. So clearly we want her to have the surgery, it is just so scary to think that the surgery that will save her could also be what tells us if she can make it on her own. So with this news, we are asking for lots of extra prayers not only for Elli, but for the surgeons and nurses that will be holding our little Elli's life in their hands.
I guess that's it for tonight, it is all just a little overwhelming. We are just going to try to spend as much time with Elli as we can before her repair praying that she has the strength to get through the surgery and have the lung capacity to make it. Please keep Elli in your thoughts and prayers over the next couple days. Brian, Cassi and Elli

21 comments:

shaylane said...

CASSIE AND BRIAN----YOU ALL ARE AND WILL CONTINUE TO BE IN OUR PRAYERS, ESPECIALLY ON WEDNESDAY. WEDNESDAY WILL BE DIFFICULT, BUT LIKE YOU SAID IT MUST BE DONE. WE OWE IT TO ELLI TO FIND OUT EVERYTHING WE CAN. TRUST IN THE LORD AND KNOW THAT ELLI WILL NOT BE ALONE THAT DAY. SHE WILL HAVE THE PRINCE OF PEACE AT HER SIDE, EVERY INCH OF THE WAY. IT'S SUCH A BLESSING TO LOG ON AND READ ALL OF ELLI'S GOOD MOMENTS. SHE IS SO BEAUTIFUL AND IS SO BLESSED TO HAVE TWO GREAT PARENTS LIKE YOU AND BRIAN BY HER SIDE. YOU ALL ARE WITH US DAILY. LOVE---SHAYLI

Jen said...

What a crazy day for you guys! I continue to keep you guys and Elli in my prayers, especially on Wednesday.

Darcy said...

Brian and Cassie,
I will continue to lift you both and your sweet Elli up in my prayers. The following verses helped me so much when we were in the hospital with Owen.
darcy
http://ittybittyblog.wordpress.com/

Romans 5:1-5
Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Grandma Reed said...

Dave said he tried to make a comment and didn't get it done. I stopped and saw Elli before I went to KU. The nurse told me to slide the trashcan over with my foot and watch while she changed her diaper. She opened her eyes wide! That was the first time I have seen them open. When the nurse got done she told me to move where she was and Elli and I just looked at each other. I want ed to talk to her so bad but didn't want to stimulate her. I wonder if she might have a hint of a dimple but her cheeks are covered. I did tell her that Grandma loves her. I keep talking to God and I am praying that he has blessed her with another lung underneath. I love you all three.

Kevin and Kathy Melcher said...

Cassi,
I have to tell you that if you ever want the doctors to come by and make any important decisions, go pump. That is what happened with me. Almost everytime I went to pump I came back and just asked what I missed, because I usually missed something big.
Cassi, Brian and Elli,
I wanted to let you know that Kevin, Kinley and I will be thinking of you on Wednesday and praying for a successful surgery and lots of lung tissue! We know that it will be a very hard day for all 3 of you, but Elli is in the best of hands. I was terrified when Kinley had to have her surgery on ECMO, but it was the best thing we could have done for her.

Paula said...

What an overwhelming day. I'm praying for a very boring Tuesday so that the three of you can rest up for the BIG day on Wednesday.

Paula

Gillian Brown said...

We will be thinking of you all on Wednesday - Elli's a real fighter!!

Take care gil & family x

amberthompson said...

Cassi & Brian,
You ARE our prayers. Taylor prayed for "Cassi's baby" last night and she thinks little Elli is "such a cutie pie!" Continued prayers for today and definately Wednesday!

Love,
Amber & Jesse Thompson

Snevets said...

Good morning Brian, Cassie, and Elli,
We were excited to see Monday went much better, and that she is making progress on the blood pressure without Dopamine. Our prayers and thoughts are with you always.

B,S,C,& R

kmm0305 said...

We will be sending lots of extra prayers as Elli gets ready for surgery on Wednesday. When Leah had been in the hospital for almost two days, we innocently asked the Dr when he thought surgery may be--John's parents wanted to know if they should drive home (3 hrs) and come back the following week when she had surgery. That was probably around 10 am, and by 2 pm she was in surgery! Surprise! They decided she was as stable as she was going to get and got the whole team together on a Saturday (no small feat, as you know how many people are involved) and got it done. We hope you all get some rest today in preparation for Wednesday.

Amy AKA "Baba" said...

Wow, what a day. I can understand your reaction to the news from the doctors. I don't know if you read Cadenne's blog (it is on my list, McDaris Family). She had her repair surgery on ECMO. You can read about her experience.

Liviana's heart was all the way over on the right side of her chest. They were so worried about hers in utero that she had two fetal echo's before she was born. It really is amazing what their little bodies can adjust to in those early days of life.

I am thinking of you and know you will need the extra support and prayers on surgery day.

Amy

Marilyn said...

We will all say a special prayer for Elli and esspecially on Wednesday. She is so beautiful!
Marilyn Johnson

Marilyn said...
This comment has been removed by the author.
Jerad and Amanda said...

Brian and Cassi,
You both and Elli are always in my thoughts and prayers. I believe she is a very strong girl and very determined. Love you all - Amanda

Heather said...

You guys are and will continue to be in our thoughts and prayers.

I have enjoyed reading your blog, you continue to amaze me with your strength! Reading your blog has become a daily addiction of mine! :)

Elli is just so beautiful! What a strong little fighter, she comes by that naturally, from both her mommy and daddy!

Take Care and God Bless!

Heather Archer

CKHBailey said...

We will really be thinking of all of you on Wednesday, hoping for the best results after her surgery. Cliff, Kristy & Hannah

Amber said...

Cassi,Brian,Elli all three of you are in my prayers along with the surgeons and nurses. I will be praying extra hard on the BIG day!

Amber

Cindy Carmichael said...

Cassie and Brian: You have a beautiful baby girl. She has shown us that she is a real fighter. You must know that you have a lot of people here saying prayers for all of you. As I make rounds here at the hospital it is not unusual to see someone checking the site for updates, new pictures etc. You know how we all get when we see pictures of babies.
We will all be saying prayers for the three of you as you prepare for surgery on Wed.
Cindy Carmichael

Kelli said...

We sure enjoyed seeing you yesterday, and how cute you look too! Mom and I visited about you guys the entire way home. Elli is so beautiful, even more so in person if that's possible. Seems she has already been a fighter, tomorrow she can really show her stuff. Believe in your faith, and things will all be taken care of. We'll be thinking of you!

KimShep said...

I will for sure be praying for you all. Sounds like little elli is holding her own. Glad to hear the updates. Talk to ya soon.

SalenaZarb said...

Cassi, Brian, and Elli-
I get on here about 20 times a day just to see if you have added anything to the blog!!! She is absolutely gorgeous!! I love the pics of you guys kissing her-it just touches my heart!! Know on Thursday you will have so many people praying for you the three of you!!! Elli sounds like a strong girl just like her mama!!! Here for you always-all of my love-Salena