The Scoop on Hailey's condition at this point...

I just wanted to take a second to explain what we know about Hailey now, although we still have lots of unanswered questions.  I know it is confusing a little bit because there were all the things we thought would be done and now what has actually been done, etc. So, Hailey was going to have a shunt placed not long after birth if needed to help her be able to have enough oxygen to survive until she could have a full repair (probably around 4-5 months old), but it turns out that her body doesn't have the typical setup so she is able to oxygenate enough blood on her own to survive until she can have a full repair.  (with a little help from an oxygen tube at the moment).

Our hope was that the full repair would be a matter of connecting existing pulmonary arteries to an artificial pulmonary valve, but she doesn't have pulmonary arteries. Instead, she has several VERY small blood vessels from her aorta to her lungs. Those vessels are so small that it would be pointless to attempt to connect them to an artificial valve right now.  So, they will be sending her home with the hope that those vessels will grow as she gets bigger and become large enough to connect to the artificial valve. There is a risk that the vessels could become smaller and maybe even not usable.  So, we are still on deck for a full repair at a later date providing those vessels grow large enough.  We are hoping and praying that will be what happens. At the moment, she is struggling to oxygenate her own blood to 78% blood oxygen levels and will continue to struggle with oxygenating her blood until she has a full repair. (Normal blood oxygen levels are around 95% but the doctors have told us that for her above 78% is enough)

In the meantime, there are still 2 unknowns that kind of concern us right now (besides those vessels). 1. Whether or not she has DiGeorge's syndrome.  If she does, it is a disease with a very broad spectrum of symptoms and functionality, so we won't know a lot about where she will be on that spectrum until she gets older. 2. Whether or not she has a problem with her soft palate in her mouth. After a swallow test they did today, they are concerned about whether there is a problem with it because the milk keeps coming out her nose.  If she does have a problem with her palate that woud require another surgery. 

We keep hoping and praying for the best.  It seems like obstacle after obstacle and I admit that I feel completely overwhelmed.   We are excited to bring her home--hopefully before this weekend--but also concerned with all the things we will have to do to make sure she will be okay when we do. Tomorrow Ben and I have to learn how to put a feeding tube down into her stomach through her nose.  I honestly feel sick at the thought but we are about to become Hailey's full time nurses, so we will do our best.  We so appreciate all of your prayers in our behalf.  We would not be handling this without them! I can't tell you what a difference it makes.  We love you all! Thank you for all you have done to support us in this time of need!