Have two appoitnments today..one at Beth Israel and another at the Bostons Childrens Hopital today.
From what I understand, we are having an u/s to determine if more fluid is in his lung since last time. We also need to get an echocardiogram for him to see if it's a heart defect causing the fluid now that a virus/chromosome/genetic is ruled out.
We have an appt with neonatal surgeon (NOT until tomorrow!!) to go over everything being done today....It's so hard to wait.
BF is being so positive and I am trying real hard to be too.
I have been an idiot and scouring google on his condition ...stupid stupid stupid . I just wanted to find out questions to ask but then found out so much bad stuff....uggg.
Prayers are on your way. Hopefully the fluid is less and the echocardiogram goes well. I know this must be so hard and completely nerve wrecking, but remember how many other things with your little man have turned out for the positive. This one will too. It also sounds like you are in good hands - Beth Israel and Boston Childrens are wonderful. Best of luck.
Hi girls...long day.
First sonogram...Long story short...he has a bit more fluid in his lungs now pressing slighly against his heart.
I am 30 weeks..but he is measuring a week ahead on his head (31 weeks) and 2-3 weeks BEHIND (26/27 weeks)on all of his "long" bones. He is either going to be a short boy or it is related to the fluid in lung issues (they do not know). Once again, its a sign of Noonans but everyone is unsure.
However, we rant o other hospital and had the echocardiogram. His heart is perfect so the tech said this may be just a total fluke but does not have an answer where the fuild is coming from...but its not the heart.
Dont know how concerning the short bones are yet..3 weeks behind seems a lot.
My prayers are with you and your little boy. BTW, a friend who was going to Brighams for her boy, her u/s until 2 weeks prior to delivery showed her son had a club foot. She and her husband were going for counselling for that. Every Dr was completely sure that this baby would be born with a club foot Her boy was born completely normal with no club feet. This shows that u/s and other tests can in correct. We are here praying for baby Noah and hope everything will be fine. Good luck
Followed up with neonatal DR today to go over results... and we are just keeping an eye on the fluid weekly...I feel better.
Todays DR does not seem to see any othe rmarkers for Noonans (usually heart defect)Noonans is not picked up by a amnio as it is genetic, not chromosonal. Two signs is fluid in lungs and short stature (as well as large head, low set ears, set apart eyes, webbed neck)
Can get a genetic test that is not covered by insurance (@ $5k) so I would never bother.
We are playing the wait and see game at this point. But I do feel much better about the process now.
Hey Court. Just reading through this post and getting caught up now. I am glad you are feeling better. You are facing all these hiccups with such strength. Your son is one lucky little boy to have such a strong and wonderful momma!! I am not on as much, but I do check in to see how you and Noah are doing. Sending lots of positive thoughts your way!!! XOXO
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