Tuesday, July 5, 2011

Ultrasound Update

We had our ultrasound this morning.   The scan took about an hour.  The nurse went over everything twice it seemed.  We didn't get the worst news, but it could have been better of course. Her cystic hygroma is 17mm.  A growth of 8 mm in 4 weeks.  The Dr seemed unconcerned about the CH.  He said he sees babies with large CHs and they just disappear later on in the pregnancy.  They believe that her omphalocele is not there or if it is, it is minor.  Miss Gracie wouldn't take her hands away from her umbilical area so it was hard to get a good look.  Her heartbeat was 170 bpm.  They referred to her as a strong baby.  She was moving and even stretched out for us.  The tears came after witnessing that.  She did have some fluid in her abdomen, but not a large amount.  When they measured her abdomen, I saw that she came up with it being the size of 18weeks.  I'm 16 weeks. He did say it was technically Hydrops, but it wasn't a severe case.
The Dr came in after the scan to talk about the measurements.  I did get a little loud with the Dr at one point.  I couldn't help myself.  I got kind of loud with him because he mentioned talking to a genetic counselor.  I couldn't help but feel like I didn't need one because I know what the dx means and I don't want to talk about termination.  I just had to be sure he understood we were moving on with our pregnancy no matter what these ultrasounds came up with.  He seemed to think maybe I was online reading stories of girls with mosaic Turner Syndrome and not stories of girls with Monosomy X.  It just pissed me off because everyone in the office has referred to it as Turner Syndrome, so that is why I refer to it that way.  I understand that she has full Monosomy X and has the least chance of making it to term.  But it is Turner Sydrome.  I told him I would be happy to see the genetic counselor if he thought it would help us.  He made it clear that our odds of Gracelynn making it to term are very, very low.  I'm hoping from here on out, he understands that I don't need to be reminded.  I know what our odds are and I would like to be optimistic about everything.  

He did upset me a bit too when he asked how many other children we had.  He asked their ages.  He said something to the effect that he thinks we are going through something very stressful and he couldn't imagine having to deal with what we are dealing with in addition to having to deal with our other children not understanding what is going on.  He kind of looked at me like he pitied me.  It was that moment there that made me realize just why I don't want everyone we know to know our struggles.  I don't want pity.  I don't want people to feel sorry for us.  James and I feel blessed to have this child.  Sure our hearts hurt and we are more than a little stressed, but this baby is a miracle and we were chosen to be this miracle's parents. 

We ended up seeing a genetic counselor and spoke to her for about an hour or so.  She was very kind and optimistic.  She took a detailed health history of our our kids, our brothers and sisters, our nieces and nephews and our parents.  She asked how much our kids weighed at birth and when they came during the pregnancy.  She did speak about TS to us for a little bit but she couldn't really give us any information we didn't already have.  She said she would look into what kind of pediatrician we would need for her if she makes it to term.  She is sending me a bunch of information in the mail as well. She apologized that I had to find all my information about TS by myself.  They all seemed kind of surprised that James and I knew all that we did.  I did find out that we will need to look at Gracelynn's heart at about 22-24 weeks and we could do that there or we might have to go to Children's.  This fits with what I have read from other TS moms.  We also talked about where Gracelynn would have her heart surgeries if she needed them.  I was more than a little disappointed to find out that those surgeries are done at Cincinnati Children's Hospital.   How can I see my newborn everyday AND take care of my other three children at the same time?

I've already considered the financial burden repeatedly driving down to Cincinnati and staying in the Ronald McDonald House will put on us.  December is already a tough month for us.  I feel like warning our family now that if our prayers are answered, we won't be able to afford Christmas this year.  Of course that is a long way off for us.

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