Fly, Avery, Fly

We find such comfort in all your comments, prayers, and words of encouragement. Right now we are sitting in the coffee shop down the street trying to take things slowly. There is no rush. We have friends and family flooding to our rescue and for that we are grateful. I will continue to pass along information as it comes. We love you all from the bottom of our hearts!

We love our girl and are so proud of all she accomplished. She will forever be our Avery Mae and we look forward to celebrating her nine weeks of life!

Carissa

Tuesday Afternoon Update

Hi, all. This is Bethany again. I have been asked by Shane and Carissa to update their blog, and while I love them so much and wouldn't have it any other way, this is one of the hardest things I have ever had to do...

It's with a broken heart and tear filled eyes that I let you know that the Keirsey family has decided to remove Avery from life support tonight and let her go peacefully to be with her Heavenly Father. They feel that Avery has been through enough and that anything else they do to save her would not be fair. She has been through so much and they just couldn't stand to see her keep going through surgery after surgery with no avail.

I, myself, am the mom of a CDH baby who passed away. I have kept up with countless CDH babies over the past two years and I will tell you in all honesty, I have never ever seen a baby put up a fight like Avery has.

While Shane, Carissa, Kaitlyn and their families are devastated, they are finding peace in knowing that Avery will soon be at peace. No more pain. No more wires. No more tubes. No more swelling. Just perfection.

The plan for tonight is to have pictures made, then bathe Avery and hold her while she is still alive. They don't have a timeline, but do know that it will happen sometime tonight.

I know you all, who love Avery (and her family), are devastated, as well. Tonight I ask you to pray for Shane, Carissa and Kaitlyn. For peace, above all else, that only God can give and for some beautiful moments with Avery.

She has been such a fighter...such a sweet, precious little fighter and I know that Heaven will be all the more beautiful with Avery in it.

Cried out and confused...

We went to house last night to clean and stay busy while Avery was in lab. They called and said they had found no blockage, just a narrowing. If I understand correctly, the heart surgery repair opened the flow too much and alot of blood is mixing and going to lungs. We showered and took separate cars back to hospital to have alone time. I drove around first and cried, yelled, and screamed!! I am so tired, mad and distraught. Carissa has been crying and depressed going on three days. We are tired of the wires. Tired of the experiments. Exhausted from watching Avery suffer. My role as a husband and father is to shelter my family. We just want to hold her and take off the tape and bathe her. Carissa arrived at the hospital first and was talking to Dr. Garcia. I joined them. The Dr. said they would discuss maybe going back in through her chest and putting some sort of restrictive piece on her aortic valve to slow the blood but it might make it mix more and she could die from infections, bleeding and everything else. Not an option we willing to try!! We cried by her bedside and held her hands. I wanted to feel her grasp and watch her eyes move under her eye lids so we asked them to take off paralytic. I played some songs for her through my headphones and we sat with her until a good friend of who is a respiratory therapist stopped by to check on me. We left around midnight after Carissa talked me into sleeping at the house and not the hospital. It stormed all night and I don't think we slept much. We came back this morning and talked to Dr. Budda. I honestly stand there sometimes and hear the explanations, but it is so surreal like an out of body experience. I cannot believe we have to endure this everyday! He explained the same things about the narrowing and the blood flow and that they are still not sure why she is swollen. Dr. Jaquis is trying to ween her completely off of the nitric oxide to see if that helps the blood...we don't know what the hell is going on at this point. Carissa and I don't want to give up, but we are really close to telling them to stop all of this nonsense and just leave her alone. To me, Avery is basically on a different kind of ecmo...treading water to stay alive. We are in a daze and need guidance from God at this point. Please let this all end soon.-Shane

In The Cath Lab

Ave is in the cath lab as of about 5:45 today. I just got a call from the nurse and so far so good. It could be a few hours before she is done. I will let you know what happens.

Cath Today

Early this morning, Dr. Seib called to let us know that there was a cancellation in the cath lab and they could probably get Avery in today. It may not be for a few more hours but we will see. I will update when they take her to the cath lab. There are some risks involved in moving her and the procedure itself, but they are minimal. If they do not find anything that is related to Avery's swelling, there may not be a whole lot more to be done for her. Shane and I will have to make the extremely difficult decision to continue on with her care, or let her go. We are both pretty nervous and extremely scared right now. On top of all of this, we found out that the "cancellation" in the cath lab today was probably because another sweet baby boy in the CVICU who supposed to go to the cath lab today passed away. We are heartbroken for this family. They have been here about as long as we have and they are distraught over the loss of sweet Dalton. Please pray for this family and Avery today. There have been a handful of children who have passed away in the last few days so the whole unit is pretty down.

We are in desperate need of peace right now. My heart is racing and I am having a hard time wrapping my mind around all that has happened over the past few months.

Carissa

Hanging in There

I talked to the nurse about an hour ago and she said Ave did not have many changes. She is still peeing pretty good. Not as good as last night but still ok. The plan is to do the cath procedure on Tuesday am. Hopefully she will stay strong. Thanks for all the prayers and support. It has been a long 48 hours. I have a feeling it is going to be an intense week. I promise to pass on info as it comes.

Carissa