More Bumps in the Road

Well, we got to the hospital this morning and were excited to find that Hailey had been taken off oxygen around 4am and hadn't needed it since.  Whew! One hurdle out of the way.  We were so happy just to have to think about a feeding tube and not oxygen too.  We were very excited because they told us that we could probably take Hailey home today if we could get through a list of things we needed to learn to care for her.  We spent the morning learning infant CPR, how to put in an NG (feeding) tube, which was scary but I made it, and how to run the pump we will need to have with Hailey all the time so she can be fed continuously. Hailey also had to pass a 2 hour car seat test where we strapped her into her seat and monitored her oxygen levels. She passed with flying colors on that one. Another hurdle down. It was all going well and we were getting really excited.  Then, just as we were getting ready to pack up, the geneticist stopped by and wanted to talk to both of us. I pretty much knew what that meant immediately.  He confirmed our fears.  Hailey has a 22Q11(pronounced twenty-two, Q, one, one) deletion, sometimes known as DiGeorge's syndrome, although DiGeorge's only covers some of the symptoms actually associated with 22Q11.  That can mean a whole host of things because there are a lot of different symptoms and a very large spectrum of severity with this disease including: trouble with keeping enough calcium, palate difficulties which cause speech delays and difficulty feeding, developmental delays, hearing loss, immune system deficiencies, and kidney problems to name a few.  So far Hailey is doing OK on the immune system, her hearing seems normal, she has trouble with the feeding, but looks pretty good otherwise. 

I had suspected that the result of this test would be positive for a couple of days now considering some of our experiences, but hearing it still just felt like a punch in the stomach.  Not knowing what the future will hold for our little angel or how much our lives have just changed is so hard.  Early on in my pregnancy we had been told that there might be some kind of genetic problem, but when we discovered the heart problem, we felt relieved to be dealing with just that.  Now, we are dealing with both.  I don't know what to say about how I feel right now.  I can't really find words.  It seems like every time we have gotten our hopes up that things will turn out for the best, only to have them dashed.  All I know is that God knows Hailey and He knows us and somehow He will pull us all through, as impossible as that seems right now. 

Anyway, we decided  to keep her here one more night so that we can have an ultrasound done on her kidneys in the morning.  Thank you all for your love and prayers. I can't express how much we need them and lean on all of you for your strength and faith.  Tomorrow will be a good day getting to take Hailey home and we continue to be excited about that.  There is one thing that has not changed in all of this and that is our love for Hailey. She is ours. We love her and are grateful to have her in our family. She is a truly incredible little girl.