Tuesday, November 23, 2010

The Day That Changed Everything

My head is hurting.  My eyes are bloodshot and hurting.  But more than anything else, my heart is heavy and hurting and we are asking once again that you keep our family in your prayers.

We got some pretty bad news at the doctor yesterday. At a routine sonogram, it was discovered that our sweet little girl has a congenital heart defect. It's hard to write those words and I'm still trying to process exactly what this means for us.

The most devastating part for me is not how it directly effects me right now or in the near future. The hardest part for both Dustin and myself is how we will certainly watch our sweet baby suffer and struggle for her life. I just can't stand the thought.

The exact condition she has is called Hypoplastic Right Ventricle (or Hypoplastic Right Heart). It means that the lower right chamber of the heart is very underdeveloped...almost not even there in her case. Our doctor said that normally, when you see an underdeveloped part of the heart, it is usually on the left side. I believe the statistics on that are just 1 in 5,000 babies. For the right side to be underdeveloped is even more rare.

The very best case scenario is this:
* We monitor the baby's heart very closely. The more information they can gather before she is born, the more prepared they will be to take care of her when she arrives. Lord willing, everything else in the pregnancy goes well and we deliver under very controlled circumstances with every doctor and specialist we need in place, waiting to take very good care of our little girl.

* The baby will immediately be put on medicine to keep a part of her heart open that naturally closes after birth. As long as this is working, we can allow the baby to stabilize and get just a little bigger and stronger.

* Within the first week of her life (from what I understand), she will have the first of three open heart surgeries to help correct this problem. The second will take place between 3-6 months and the third is done several years later.

* Our sweet girl lives a normal, healthy life (normal only to the extent that her parents aren't completely crazy and overprotective).

There are so many other scenarios that are much, much worse than this, but we aren't going to focus on that unless the time comes when have to.

What this immediately means for us is that I am once again considered a very high-risk pregnancy. I'll be monitored every week and they will watch the baby's heart very closely. We will prepare for an earlier than ideal birth with steroid shots.We will also be making some very difficult decisions and we pray for wisdom as we face these things.

The very best place for this baby to have these surgeries is at Texas Children's Hospital in Houston...nine hours away from here. Because of the risks involved in transporting the baby after birth, it has been recommended that if we decide to go with pediatric cardiologists down there, that I go ahead and deliver there as well. This will mean a lot of time away from Dustin and my sweet boys.

To be completely honest...I'm not handling it all very well. I'm really just crushed. My dreams of a normal and healthy pregnancy are crushed. The picture in my head of delivering my baby and getting to hold her in my arms right away is crushed. The hope of never having to walk into a NICU again is gone. All my visions of Eli and Landon showering their new "sister baby" with love and kisses just can't be. I feel defeated and scared.

But I know that God's love is all around me. I know there are friends and family who are going to help us through this. I know I have a husband who is ready to fight this battle right by my side. It's just going to be a really long road and I pray for strength as we start down it and adjust to our new "normal."

Thank you for your interest in our family. We received so much love and support when we were facing tough times with Eli and Landon. You all have been such a blessing to us. Eli and Landon's health is a constant reminder of the power of prayer. The way God worked in our lives that year was so evident, it was almost tangible. I have faith that God has big plans for this sweet girl inside of me. We'll do the best we can to take care of her and just pray that His will be done. He will certainly see us through this.

16 comments:

Megan said...

Your family is definitely in my prayers. I don't have another child on the way yet but I can relate to wishing/hoping/praying that the 2nd time around it's easier and more "normal," so I can sympathize with feeling like a dream was crushed.

God is good, no matter what, and I'll pray that His will be done and you guys have the strength, wisdom and courage to face it. And that God will bless you with His sufficient grace every day like He promises!

Hugs!! (and some tears)
Megan

mom said...

Your family's love, support and wisdom will help guide you in all those physical decisions and your Lord, God and Savior will bring your thru this unchartered journey. I love you... you have amazing strength and you will never be alone.

Crystal said...

My heart is breaking for you. You all will definately be in our thoughts and prayers. You and Dustin are two of the strongest people I know and God will hold your hand through the tough times.

Megan said...

Also...don't know if you like contemporary Christian music, but after I read your post, this song came into my head:
"There will be a Day" by Jeremy Camp.

It contains several beautiful thoughts; hope it can help in some way.
http://www.youtube.com/watch?v=8TipLsmZgjI

Matt Hall said...

Your family will be in our prayers! I'm sure you know people, but I grew up in Houston and can put you in contact with some Christians if you need anything!

Elizabeth said...

you know you all are always in my prayers. j and i will continue to fervently pray for you all. we love you more than we can say. still can't wait to meet her!!

Kacey said...

Hey, Amy. It's Kacey Batterton. I'm so sorry to hear about the news of your daughter. Thank you for letting us know and we will pray for your family. God bless you.

Bekah said...

Amy, I am so sadden by this news. I know you are a strong, God fearing woman and you will put God first and be an example to many. I will you keep you and "baby girl" in my thoughts and prayers. I have faith that God will see you through this challenge.

Jen McDaniel said...

You all will be in my thoughts. Hang in there...

Laura said...

Amy, I know you don't know me from Adam, but I've been following your blog for about a year now. I have a friend whose daughter has this same heart condition. (It may be the other side of the heart for her, though. I'm not certain.) Her daughter is now 3 years old, and yes, they have been through many trials and surgeries with her. I would be happy to put you in touch with her if you would like. She and her husband are Christians, and I believe they could be an encouragement to you as well as giving you some idea of what to expect. My e-mail is we4baggetts@gmail.com. We are in Fort Smith, Arkansas.

Laura

Stephen and Larissa said...

Amy,

I knowc there is nothing I can say that will ease this news for your family, but know that you and your sweet baby will be in our prayers

Linz said...

Praying for you and your sweet family. I know you and I have never met, but I have been hooked ever since I saw your sweet boys in the NICU at Covenant.

Saddened by this news, but encouraged by your faithfulness.

Dana Gastelum said...

Amy, Blake and I are so so sorry to hear this. Just wanted you to know that we are praying for y'all and for your precious little girl. Take comfort in the fact that she is in God's hands and He will take care of you all.

The Clinkscales Family said...

Hello there! I happened to do a google blog search tonight and typed in Hypoplastic Right Heart. Your blog was one of the first that came up in the search. To be honest...I'm procrastinating from cooking Thanksgiving dinner and searching the internet in the meantime. :) I'm so glad I came across your blog though. I have a 21 month old son who has Hypoplastic Right Heart. I was like you and found out about his heart defects when I was 20 weeks pregnant. My son was born with HRHS, Transposition of the Great Arteries, ASD, VSD, Tricuspid Atresia and Coarctation of the Aorta. He underwent his first surgery (the Norwood) at 6 days old and his 2nd surgery (the Glenn) at 4 months. We are looking to have his Fontan surgery in April/May of 2011. I have a blog and would love for you to look at it. Our son Cain is doing fantastic considering all he has been through. We have been so blessed and I know you will too. I'm not going to say it's easy. It is more than hard at times but our son has blessed us in so many ways. I'd love to talk to you anytime you need to. I'm actually pregnant with our 2nd child...a girl with a healthy heart!! I'm scheduled to be induced on Tuesday so I may be out of touch a little bit but certainly email me if you would like to chat. My email is catherine_clinkscales@yahoo.com and our blog is www.clinkscalesfamily.blogspot.com. Hang in there. I know how tough it is. We didn't speak to anyone for days after finding out. It was just too hard. Many hugs to you and I hope you have a wonderful Thanksgiving. I promise you will have so much to be thankful for in the coming years after you see what your sweet baby will be able to make it through!

Ophelia said...

Dear Amy and Dustin I will certainly pray for you both and your baby girl. Have Faith in Him dear and trust HIM Completely and surrender to His unending Love. We do not know HIS reason for this but we can only pray for HIS Help and guidance. Take care of yourselves and the twins and God bless. Ophelia

Lora Poe said...

You're in our prayers. We are here if you need a babysitter, food, visits, etc. Big hugs!

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