Mom and i went to smitties for breakfast this morning and then went to pick up Hank. We arrived for our appointment just in time! this time we only had to wait for half and hour intead of 2 hours! We had a different lady do our ultrasound today and she was really, really nice! We asked her if we would be able to get some pictures because we weren't able to get any from winkler and she said that wouldn't be a problem. In the end we got about 10 pictures!
With this ultrasound she was able to see more than they did last time. We saw that Noah has 6 little toes on each foot, and when she measured the kidneys she said that they were the size of a 31 week baby(I was 26 weeks at the time) so the stomach is bigger. She also noticed that Noah Has clubbed feet and she said that because of the stomach being bigger and not very much amnio fluid he is a bit squished in there so that is what caused that. ( There is not very much fluid because his kidneys are not working so he is not swallowing it as he should and then also not producing it.) They looked at the heart again, and the heart is still perfect! we saw his little fists and she counted his fingers and from what she could tell there were a normal 5 there!
When she got to the head she couldn't see very well because just like last time he is all snuggled up in the placenta. but she did find that there was a sack on the back of the head and she thinks that is where the brain is, and she also found that there was a covering on top of the head so it won't be open like they first thought. We couldn't believe how much had changed. Oh and at first when she had put the wand on my stomach she pulled it off and asked us if we knew what we were having. We told her yes and then she showed us why she pulled it off. Apparently our little man like to show off his stuff!
Dr Reed came in and also checked out the ultrasound . Then the geneticist came in and told us that they know excactly what is wrong with Noah and it is not anencephaly. He said that the extra toes and the polycistic kidneys and the brain in the pouch on the back of the head ment ne thing. Our little boy has Meckel Gruber. That was quite a shock for us becuse when he told us the chromesomes were fine we though that ment no meckel gruber. And meckel gruber is genetic so hank and i each had the gene. (out of 40,000 genes) wow. that also means that everytime that we get pregnant we have a 1-4 chance of it happening again. they asked us again if we were related because it is so rare for 2 people to have the same gene and again we told them no. That was so depressing to hear.
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Wishing you guys all the best with your ultrasound on Thursday! Enjoy this special time with Noah!
That's cute that Noah showed you that he was, indeed, a boy! Thinking and praying for you.
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oh jolene, i think of you often. you are "running this race" with such faith! you are truly amazing.
I looked up mekel-gruber syndrome & the study apparently has shown that those of Finnish descent are more likely to have it than any other group of people. I could "hear" how upset you were that the md profession asked if you were related. Maybe you are both of Finnish descent?
I'm so glad that you & Hubby got to see little Noah. It's so exciting to see the fingers & toes & find out more details. No matter what!!
Jolene, man how your life story has so many similarities to ours (Elijah's) Like when you write that Hank stayed home... & you guys did'nt know what to do - Thats how we were too. It is so hard. ALL THE EMOTIONS You cherish knowing and having Noah but then scared of what is to come. LET HIS SPIRIT GIVE YOU THE COURAGE EVERY MINUTE 'one moment at a time'!! STEVE & I ARE PRAYING FOR YOU & HANK.
I read on your moms blog that your dr. sounds worried about his head? I will be praying okay ! & for your sister too!
Marie
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Our family is in a situation similar to yours...we have genetic recessive microcephaly or so they think...we also have the one in four chance and have also been asked if we are related! UGH! We have two healthy children, two in heaven, and one on the way.
If you ever need to chat...I think I could be an understanding ear considering the similarities. Please know that you and your sweet family are in our prayers at this bittersweet time. I am so sorry for your loss!
Love and Prayers,
Kristy Bolte
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