Saturday, September 29, 2007

Here's the deal...

I received a lot of phone calls from friends and family yesterday, wanting to know what was going on with Ava. I will try to explain it as best as I can, however, I am not a doctor so hopefully it's pretty accurate. Well, as you may have read in the previous post Ava has been diagnosed with several things, the main thing being hypoplastic left heart syndrome. After reading about it on the internet I have learned that this basically means that there are several abnormalities in the heart and main blood vessels. This happens during pregnancy within the first 8 weeks of development. One of the most dangerous defect of this is that the left ventricle is very underdeveloped. In a healthy heart the left ventricle is normally very strong and muscular so it is able to pump the blood to the body. Being underdeveloped, the body will not be provided enough blood flow. Treatment for this syndrome is either numerous surgeries beginning right after birth up to 18 months or later, the second option being a heart transplant. After reading about things the baby will endure after birth, it takes me back to Kaden's birth and hospital stay. The articles described babies being on the ventilator, numerous IV's, arterial lines, chest tubes, just things that a baby shouldn't have to put through.

That is just one of the many abnormalities the doctor diagnoised Ava with. Another being a complex heart anomaly, suggestive of large Atrioventricular Sepect Defect. This basically means that the heart did not divide into the four chambers a healthy heart has. The doctor also stated that he did not see an aortic arch. What I have found about the aortic arch missing is that there is no way for the body to receive red blood leaving the heart. As you may guess, this is very dangerous. Ava's palates to her skull are not develping right or in other words not fusing together right. Her head is mearsuring bigger and more round than a normal baby at this stage.

I don't understand why this would happen again. I have tried to think of all the reasons and I just can't seem to make sense of it. Don't get me wrong, I would never trade Kaden for another baby, and I am thankful God trusted us enough to put him into our lives. I know and have heard numerous times that God does not give you more than you can handle, which means Nate and I must be stronger than we really think we are. After reading about all the different findings with Ava, I think she is definately going to have to be a miracle baby. I try to have good thoughts, but it is hard. I think she is going to be a really, really sick baby, and after watching Kaden go through all that he has been through and knowing how sick he was (which I think she will be a little more than that), it just doesn't leave you with too much hope. I know that Kaden is a miracle and that miracles happen, that and God is all you can really hold on to.

Another thing that really has been bothering me is what to do when she is born...meaning with her and with Kaden. I have never been away from Kaden for more than a day, but I can't imagine leaving Ava at the hospital on her own. Being that she will be born during cold and flu season and RSV season, it would not be safe to bring Kaden up to KC and risk him getting ill. What do I do? And what if she is in the hospital for a long period of time. I am working full time now, I would quit except that now, unlike before with Kaden, we have more responsibilities. We purchased a lot in hopes of building a house...I have a feeling that is not going to go so well. I know that we will figure it out, but thinking about it all now is very overwhelming. The thing that gets to me the worst is the seperation. I know that I could go down there for a day and then back home for a day...but financially that doesn't seem too realistic. Maybe we should just move to KC : ). That would be the easiest, but Nate might end up in the hospital with high blood pressure issues from all the horrible traffic : ). I know I am rambling , and I know that it will be hard, but we will come up with a solution. Please continue to pray for Ava. Thank you all for all your thoughts and prayers.

7 comments:

Isabella said...

Amy I think one of the hardest things Matt and I have had to do is leave our other two children while we stayed with Isabella. You are miserable no matter where you are. When you are at the hospital, you feel bad for not being home with your other kids and when you are at home you feel bad for not being at the hospital. All I can say is that there is no easy solution. We had even also talked about moving to KC. It is a hard decision. I will be praying that God will help you make the right decison for your family. I will also keep little Ava in my daily prayers. I don't know why you and Nate have to go through this again but God always has a plan. I don't think we will ever understand what that plan may be. I will just pray along with you for a miracle because you are right Kaden is a miracle and my little Isabella is a miracle. So miracles do happen!!
Love and Prayers
Megan

Anonymous said...

Hi, I know you don't know me but I'm friends with Micah. I read their blog today-and found your site. I wanted to tell you-God Bless your family. I can't imagine what your going through but I wanted to let you know that people you don't even know (like myself) are praying long and hard for your family! and while I know that doens't make it easier, it might make it resassuring knowing there are prayers a many going to the big man!
God Bless You, your family!
-Dana(Micah's Friend)

Gabi's Daddy said...

We love you guys! Not much else to say...haha.

You are always in our prayers. You guys have been through so much and know the power of prayer.

The craziest thing is when Micah and I went to church on Sunday June 24th before Gabi's surgery on the 26th, the sermon was on prayer. It will always stick with us and the main thing that sticks in our heads is that God always answers our prayers. It may not always be the answer we want but he always answers. You either get what you pray for, you don't, or he feels like you need to wait before he does, but there is always a reason for any one of them.

Again, lots a love going your way.

Jason, Micah, ANGEL GABI, Belly Baby Acker

Halle's Momma said...

Amy, you are incredible! You are an incredible mom and an incredible person. I don't think anyone can ever understand what you've been through or what you're going through until they've experienced it, but as always I'm in awe of your strength and grace. No matter what the future holds God will always give you what you need to get through. Every single day He refills you with faith, every day is a new day. You are always in our prayers, and always here if you, Nate or Kaden ever need anything.

Michelle said...

Praying for your baby girl and the family. Kaden is going to be a great big brother. I can't imagine the feelings you have now but please know many are praying.

Michelle - Matthew's Mom (from T21 Online)

Gabi's Mommy said...

I am speechless! I wish I had some amazing words of encouragement or wisdom like you always had for me, but I am at a lose for words.
All I can tell you is pray hard and hope that God helps you both get through yet another one of life's difficult journeys. I can't help but get angry, why are such bad things happening to such innoscent children. For the love of God, give the babies a break!
You and Nate have shown us what true strength is with every adventure you have had with Kaden. You truly are inspirational to all parents. But I do not think it is fair you be challenged again! Keep believing in miracles, you have one to prove that miracles do happen, why not 2!
We will continue to keep you in our thoughts and prayers. I am adding Ava to our prayer list at chu8rch tomorrow, so their will be plenty more prayers coming your way!
Love, Hugs, and Prayers!!!
Micah

Anonymous said...

Amy, I look at you and I truely believe you in yourself are a miracle. You and Nate have overcome so much in life and I cannot imagine the thoughts, decisions, adn worried that you go through daily but I pray every day that God will do what is best for all of you and that he will get you all through this. You are AN AMAZING MOTHER who shows true courage and strength and you are all simply amazing, Iwant you to know that you are all in my daily prayers and I here always! Love Always, Whitney God Bless!!