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.
Do Not Worry
9 years ago