(These are notes straight from my phone journal that day)
March 7th - it became worse...
Our baby boy is so special and so amazing. Today we discovered
that he has several special parts. Jack's heart didn't fully develop on the
left side. His sweet baby brain has parts that didn't develop at all and others
that haven't developed properly. His body is full and strong and just the right
size for twenty weeks. We have hearts full of dreams for him. We love him. We
feel super low, pretty much non existent hope for his future here with us. We
do not know what The Lord plans or when, but doctors feel he will not make it
to birth. I just want him not to hurt. Actually I just want him with me
forever, but... He is still just kick kicking in there. I am just waiting for
horror. He loves us. We love him. He is so special. I'm so scared for an early
delivery where he has already gone to be with The Lord. I'm even more scared
for an early delivery where he dyes in my arms. I can't do this. Oh Lord why?!
Why give him to me and then take him away?! Why let me know just to wait and
wait for days or months. No clue. No idea what to do. Layla is going to be so
sad. She really loves babies and was pumped to be a big sis again. My family
will never be the same without him. I felt something was wrong from the
beginning, but I didn't think this.
The details looking back -
Patrick and I arrived at the hospital and first met with a genetic counselor for a long time. She went over our family history and explained all kinds of genetic disorders to us. We still felt quite a bit of hope at this point. After that we went in for an U/S. This time the sonographer walked us through some things that she saw. She did see heart issues - I was hoping it would show differently. Then she laid the video over his brain and said, "This is the top of his brain. Most babies have two parts of the brain - split right down the middle - see how he does not?" SAY WHAT?? Ok, so I know that heart surgeries are possible. Though I don't know what his heart issues specifically is, but saying to me that his brain did not divide? That can't be ok in any way. :*( The tech left and got the perinatologist. She was also super nice. We all went to a different U/S room where magically the genetic specialist was grimly awaiting our arrival. The doctor walked us through Jack's heart and brain and our world slowed and then stopped. I couldn't speak for Patrick asked our questions for us. Downs affects the 21st Chromo and one thing we wanted to know is what are the chances that Jack could "just have trisomy 21"? Not likely. It seems that he has hypoplastic left heart syndrome - where the left side of his heart did not develop. This is not an issue in the womb, but after. His brain is called Holoprosencephaly and the doctor showed us how it did not split into two sides and also said that the cerebellum didn't develop at all.
I am a planner. A researcher. I had to know more. Right then we decided to get an amnio done so we could look closer at Jack's chromosomes. It hurt worse than I expected. They said they'd call on the 11th with news of the 21, 18, 13, X, and Y chromosomes. Then later that next week the full report would be finished on all of his chromosomes. We left the hospital together leaving one car there, told my momma to take the kids to her house for two days since I needed to be on rest after my amnio, and we went home and wept together for two days.
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