Our appointment days are always an emotional roller coaster for me. On one hand I can't wait to see Noah again. In my head I keep hoping that we will be told his condition has greatly improved, that we don't need to worry about whether we will be bringing him home or not. Then the rational part of my brain kicks in and reminds me that while their might be small improvements, he's not going to get better from this. Today was really no different than usual, but we did learn some things today.
First, let me say that overall, Noah's condition has not changed. The doctor is pretty set on a severe form of Osteogenesis Imperfecta. Type II or possibly a severe Type III. We will be praying for Type III. He told us that if diagnosed with one of these, most of the time it is a dominant genetic mutation. Meaning that for it to happen again should be rare. Last week our doctor went to a conference and was able to listen to an expert on skeletal displasias and I think he learned quite a bit and felt more comfortable going with the OI diagnosis before Noah is born.
Second, to us personally he looks about the same. they were only able to get a good look at one of his femurs. It was broken in two places, but it looked to be lining up relatively straight. One surprise Noah had for us was that he has managed to turn head down. The doctor had told us that he would probably stay breech, but then Noah proved him wrong. No wonder my ribs have been hurting, he's been sitting on them. We were told an estimate of 2 lb 10oz for his weight, but honestly that's probably a poor estimate since Noah doesn't fit into normal standards. It was good to have a number though. We got more pictures so I will attempt to get some of them up tomorrow. We have such a cute little boy.
Last, we have some future dates set up. We will be touring Mercy on Monday just to get an understanding on our surroundings beforehand. Next appointments are in 2 weeks for a regular appointment and 3 weeks for the next ultrasound. Last and most important is our C-section is scheduled for March 24. We will be having a lucky charm baby. Now all he needs is to be born with red hair like his daddy's. That would make my day.
I want to say thank you again for all of the prayers going up for us and for Noah. Another thank you to the wonderful parents of snowflakes that I have been introduced to. It helps to have those success stories. All of you have been so wonderful during this very difficult time.
First let me say that I boo-hooed as I read your post, it is all too familiar. I just wanted to let you know that I really enjoy reading your posts and seeing the progress off your adorable lil man and the beautiful nursery you are preparing for him. Know that whatever is going on other people have been there where you are and you will get through it. If you haven't already read the Welcome to Holland poem, please do it is a sum of my feelings about this journey we are all on together. My lil guy is the biggest blessing and I wouldn't change anything about him, except maybe to take away the unbearable pain he has suffered through. We are all thinking of you and here for you anytime you need us for support, questions, or just to cry it out. We can't fix it but after going through my rough pregnancy I realized that you don't need to hear that you're never given more than you can handle, etc you just need someone to say I'm sorry and if you want to scream and cry you can because it just sucks. Just remember Noah is sooo worth it!
ReplyDeleteOur 3rd son was born on St. Patrick's Day last year. We too did not know if we would be bringing him home. I am happy to say that we will be celebrating his 1st birthday this coming St. Patrick's Day. He too had a displaced femur fracture visible on ultrasound early on in utero. I pray that this time next year you will be planning a 1st birthday party as well!
ReplyDelete