Tuesday, February 12, 2008

Update on Ava Rae











Ava got through surgery well. The surgeons were actually able to get her off of the bypass machine (aka ECMO), although it lasted for only 10-15 minutes. She was put back on and continues to be on it. The good news is that it will allow her heart to rest after going through such a major surgery. When the surgeons opened her up they were disappointed realizing that her aorta was even smaller than they hoped after doing an echo. They explained to Nate and I that being at a 3 is severe, but hers was probably a 1 1/2 - 2. The problem isn't that the aorta is small, because they can fix that to a certain degree. However, the surgeon said that when the aorta small the corinary ateries tend to be small, and there is nothing they can do about that. I believe these arteries are what carries the blood back to the heart although I am not 100% sure at this time, we received a lot of info yesterday. Ava seems to be doing well on the ECMO machine. It was really hard seeing her yesterday after sending her off in the morning looking healthy. It really brought back a lot of terrible memories being that Kaden went on the same life support. It is the worst feeling in the world, feeling so helpless as a parent. You want to make everything better and you pray and pray that things go well for your little one and that they aren't feeling any pain but you don't know how things are going to turn out. I feel so bad for her lying there, innocent and not knowing what a good life is suppose to be like. I want to hold her close and cuddle her, but we can't. I just continue to pray that God will hold her for us and let her feel our love. I pray that she will come off of ECMO and do wonderful, but only time will tell. I think the doctors are going to try weaning her or taking her off on Friday.

Sunday we had Ava baptized. Kaden was actually able to see her and hold her and kiss her for the very first time. He is such a great big brother. He read her a book and sang her songs. It was all too cute. Kaden went home with my dad today...that way if something were to go wrong (knock on wood) that Nate and I could be at her side and so we could spend more time with her without feeling so guilty that Kaden was here at the RMH waiting for us. It was really hard seeing him leave. I think he was a little confused that he would not see us for a couple of days, but he was sooooo ready to go home. He will be back up on Thurs. I am already wanting to see him. I just want to again thank you all for all of the support and prayers. They mean absolutely everything to my family and I right now. I want to leave you with some pictures of Ava when she was first born. I will try posting pictures of the baptism soon. She looked absolutely beautiful. Thanks again for EVERYTHING.

13 comments:

Gabi's Mommy said...

Ava Rae is absolutely BEAUTIFUL!!! I would expect nothing less from the 2 of you. I just want you to know we are praying so hard for Ava's recovery. I know that these next few days are very critical and that has got to be so tough on you. The craziest part of it all is that this is not the first for you. It absolutely amazes me how life happens right before your eyes. The helplessness we experience is indescribable. I want nothing more than for the 2 of you to be holding Ava in your arms.

I found a beautiful quote I put on our web site...

If God brings you to it...
He will also get you through it!

Keeping your faith can be very hard at these trying times, but God knows what is best for your sweet baby girl. Trust in the Lord and enjoy every second you have with her!

We continue to be with you in prayer! Sending you HUGE HUGS!!!
Love,
Micah, Jason, Gracie, Angel Gabi, and Kinsley

Do you have any pics of Kaden holding her?

Gabi's Mommy said...

I almost forgot...I adore the pink polk-a-dot bow, perfect touch! I knew her and Gabi would have the pink common factor:) Definitely their color!

Pam said...

Oh Amy, she is sooooo pretty!! It breaks my heart reading your post, and not being able to be there and give you a big hug.

I hope she is able to come off of ECMO soon.

Know that we are thinking of you and praying as always.

Lots of Hugs!!

Pam and Rhett

Connie (Joe's sister) said...

What a beautiful little girl Ava is! You are all in our thoughts and prayers!

Anonymous said...

You all do not know me, but a friend of mine that I met online through our daughters both having Turners Sydrome asked me to say a prayer for your Ava and foryour family. I did say prayers for your family and will continue to do so as I will follow your blog. Your children are so beautiful! Keep your faith and all will go as God intends.

Sincerely,
Gretta/Kentucky

P.S. I have HUNDREDS of little girl baby clothes that I have been wondering what I'm going to do with....LOTS are brand new. If you would like them please send me an email at jillyd@insightbb.com with a shipping address and I will ship them all to you.

adrianna york said...

You may not know who I am but I am a friend of Megans. I just wanted to send you my thoughts a prayers to you and your family. I have a little girl and her name is Adrianna. She is 3 months old. I also wanted to say that Ava is a beautiful baby.
Well I hope everything gose good with Ave.
From Adrianna and her mommy Kim

Anonymous said...

Awww! The little bow is so perfect! She's absolutely gorgeous and I'm praying things go smoothly for her these next couple of days. I hope you and Nate enjoy some special time with her tomorrow and Thursday - and don't worry, Kaden will be fine! We'll have lots of fun and he can tell all the kids at school about his new little sister and how wonderful she is :)

~Cristen

Anonymous said...

Ava is so precious and addorable. Look at all that black hair. She is a little miracle. It was good to see you all and hold it even if it was for just a short while. I have been praying for her and you all. It was cute to see how big brother Kaden was giving her kisses and singing to little Ava. Nathan and Amy you two are wonderful parents. I have been telling folks about Ava and Kaden and we are all praying for you. Trust in God and he will get you through it! Love the pics and her Christening gown was absolutely beautiful, can't wait to see those pics posted. Take care and make sure you get your rest to keep your strength up for Ava also.
Sending our prayers, love, hugs and kisses.
Love,
Aunt Pamela and Cousin Megan

Anonymous said...

Nathan and Amy,
We are keeping you and your beautiful family in our prayers. The community of Corning is praying for a healthy recovery for Ava. She is a very beautiful baby. She looks so perfect on your pictures. You are very strong people. From one mother to another my heart aches for you not being able to hold and cuddle your baby.
May God Bless all of you,
Travis, Nickie, Kamble, Ian, Lena, and Ben Haverkamp

Anonymous said...

I am not sure if Nathan would remember me...but I went to school at B&B High School, and I remember him from those high school days. I got a forwarded email asking for prayers...which we will send out to you all. What strength you both must have...it is inspirational. Your children are beautiful, and I pray that you will be at home together as a family soon.
We moved here to Osawatomie, KS about a year and a half ago...and we just happened to meet James and Andrea Rice..Conrad (C.J.)and Nikki (they live right down the street from us!). When they heard where I was from...they asked if I knew you guys. I will pass the email asking for prayers on to them.
Take care and God Bless you all,
Sarah (Bergman) Glendening

JanaO said...

Ava is such a cutie! Hope that all goes well and that we get to see you all soon. Remember I am just next door if you need anything!

Jana and Ricky

Anonymous said...

Your baby girl is so precious! Absolutley beautiful. Keep holding on to your faith and each other. We continue to pray for you everyday.

Kristy Eickholt, JC

Isabella said...

Amy,
As of right now we are in the PICU. I would love to meet you!! We are staying at Cherry Street. So Matt and I will try to stop by and see you guys really soon.
And of course Ava is in our prayers.
Megan