Friday, April 6, 2012

Optional Testing and results

We decided to do some optional testing with this baby because of the experience we had with Vince. We knew that with the new baby if there were any complications we would want to know in advance because our schedule is pretty crazy with work, therapy, and doctor's appointments. Even though they have gone down in numbers, Vince still has 5 specialists and we see each of them at least twice a year if everything is going well. That does not include when he is sick or if there are concerns about something. So, the testing started with a NT scan at 12 weeks. The NT scan is just an ultrasound where they check the fold at the back of the neck accompanied with some blood work. They also do a second round of blood work during week 17. The reason this is done is to rule out Spina Bifida as well as some other conditions. Really going into this test the only thing we were concerned with was the SB. Of course this testing was on January 3rd. That probably does not mean much to you, but we have not had the best luck with January. January 2nd 2009 we found out Vince had Spina Bifida, January 19th 2010 Vince had his first Shunt revision, January 7th 2011 Vince had his second Shunt revision, and here we were in 2012 hoping our luck had changed. Well, the fold of the babies neck was at 3.0 and that is the point at which they start referring people to specialists. We went into the appointment not knowing what to expect and came out very confused. The doctor explained to us that this put us at an elevated risk for a chromosomal issue (Downs Syndrome) or possibly a heart problem. When we got home we looked up lots of information and knew that the only thing we could do was wait. At 15 weeks we went to the perinatologist to have further testing done. Because we have been through this process before and had a very good experience with Bronson we decided to go back there. We first met with the genetic counselor and talked about all of the possible things it could be and what tests we could have done. We were for sure going to have another ultrasound and we decided to have an amniocenteses done. With the ultrasound it showed everything to look pretty normal. There were no markers for Downs, so that was a bit of relief to us. The genetics counselor did tell us that the heart would be to small to look at during this appointment, so we would have to come back in between weeks 22 and 24 for that ultrasound. The doctor came in and did the amnio after the ultrasound, and I have to say it was not that bad. The idea of someone sticking a needle into you abdomen all the way to your uterus is a bit hard to accept at first. He did have a hard time getting the needle though the skin too, he asked if I worked out (a nice compliment I suppose). We then had to wait 3 days for the first round of results. Being that it was a Friday, that meant not a true three days, but Wednesday of the next week. Finally Wednesday came and good news, all of the first round of chromosomes were normal. The date, February 1st. We still had to wait 7 more days for the rest of the results and they to came back normal. We only had one more test to do. On March 20th, we went back to Bronson for the ultrasound of the heart. We first met with the pediatric cardiologist and he asked us why we were there, with all of the other result coming back normal there was a good chance nothing was wrong, in fact we only had a three percent chance of it. During the ultrasound we could tell things were not going great. Again, being that we have been through this type of stuff before, we picked up on things the tech was saying and when he went to go and get the doctor half way through, we were pretty sure there was something wrong. Unfortunately we were right. The baby has something called congenital heart disease. He has two holes in his heart, one at the top and one at the bottom. This is going to require surgery after he is born, but not until he is three to four months old. The surgery will be performed at Mott's Children's hospital in Ann Arbor because they are one of the few places that do pediatric open heart surgery. We have done lots of research on the condition and have found that it is the most common birth defect, in fact 40,000 kids are born with it every year. After the surgery he should have a normal life with no restrictions, which was great news for us. Just like with Vince we are so excited to be having this baby and no matter what, we know he will be loved and we will make it though this situation just fine. The school year for me might be a bit interesting next year because of maternity leave and surgery leave, but I work with an amazing staff, who I know will help in anyway possible. We go back in two weeks to have another ultrasound and to ask any questions that we have, which we still do have a lot of them. They will watch him during this pregnancy to make sure everything is staying constant. We have seen how powerful your prayers have been with Vince and hope that maybe you could also say one for the new baby too. We will keep you updated with the new journey we are on.

Love,
Nick, Andrea, Vince, and Baby Brother

1 comment:

  1. Congratulations on your new baby! I'm sorry to hear he will have to undergo surgery, but it's wonderful that should resolve the issue and he will be fine. Pregnancy must be such a roller coaster with the 'after SB" baby - it would be for me.

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