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cdc1982
member
Update to "T&P" post From Thurs/Fri (long)
cdc1982
member
The original post: https://community.thebump.com/cs/ks/forums/thread/62478606.aspx
The update:
Today has been one hell of a day. We went to the Prenatal Diagnostic Center at GBMC today. We were there for around 3 hrs. The tech was wonderful; she gave us so much more information than we've ever gotten at Advance Radiology (& I always thought they gave us a lot of info!). They also have the ability to do the 3D (4D?) scans. Since it was our 1st time ever there, she had to measure everything & as she did, she answered any questions we had, even going back to show us something we were asking about. She said he looks great (still a boy, haha!). The only problem is his feet, both of them. The radiologist came in to talk to us as well about everything. He has "ectrodactyly". From what they can tell, only his feet are affected, his hands looks great (all 10 fingers). 1 foot is more affected than the other but that's all they know right now. We won't know if it's genetic until after he's born & they can due tests (testing right now could result in pre-term labor). It's very possible it was just a "fluke" during development.
We have to go back to GBMC in 2 weeks for a fetal eco just to be 100% sure that his heart is ok. They said they have no reason to believe it isn't but it's just one of those things they like to double check in more detail when there's another issue. We go back 2 weeks after that for another u/s to make sure he's continuing to grow correctly.
So far he's about 1.13lbs, which is right on target for his "age" & all his measurements are on spot too (I'm due 5/3 & her report based on measurements put me at 5/1).
So. Lots of tears, lots of unanswered questions. Most of our questions won't be able to be answered until after he's born.
Dylan Gabriel
04/29/10
Aiden Drake
04/28/12
This discussion has been closed.
Re: Update to "T&P" post From Thurs/Fri (long)
I can't imagine what you're going through. T&Ps to your family! And thanks for updating, I was thinking about you today.
I'm so sorry you're going through this. You've been on my mind all day. I can't imagine still being left with so many unanswered questions, but just know you are in capable hands and they are doing everything they possibly can for you.
*hugs*
thanks for updating.
I'm sorry you've gotten tough news; hoping for the best for you and your LO.
DE IVF #1= 04/11 - BFP
Someone's getting a little brother!
Nope, nothing like this on either side. I think that makes it even harder. No one with missing fingers/toes or extra fingers/toes.
lovelylittleworld
BFP#2 1/12/12 ~ Missed M/C 8w2d
Glad to hear you were able to get some answers . I can relate as my recent pregnancy with my DD we had some issues as well in utero and ultimately got an amniocentesis . It was scary but not anything how I imagined- not sure if this is something you are considering but it weighed on me heavily .
. My DD has a heart condition diagnosed in utero and its rather amazing how much they can see /but also how much they cannot determine until they come out ! .Good Luck and if you ever have any questions please feel free to page or email me .
... every single day of forever.
Hugs! I'm just catching up. I'm so sorry you have to go through this. I'm glad they are closely monitoring you. I hope things go well from here on out.
I'm glad you were able to be seen by the technicians at GBMC--they've always been really great every time I had to get an ultrasound. I talked to the genetic counselor a few times with my last pregnancy and she was great.
I will continue to keep you guys in my T&P's.
BFP#1: 01/10, M/C 6w
BFP#2: 06/10, M/C 5w
BFP#3: 09/10, DS born June 1, 2011
BFP#4: 07/12, M/C 5w3d
BFP#5: 12/12, EDD 08/18/13
My Blog: Decorate This
Thanks for updating. I have been worrying about you. I am glad that so far it looks like only your LO's feet are effected.
My Dad doesn't have any fingers. He was involved in a fire as a small child. They had to amputate all of his fingers becuase they got Gangrene in them. He received a lot of physical therapy as a child, but because the accident happened when he was only 2, he doesn't even remember it. Having no fingers is his normal. The only thing I know that he cannot do for himself is tie his own shoes.
During Veitnam my Dad volunteered at the local VA hospital hear his home. He worked with the returning soldiers who had to deal with amputations. He said he got A LOT of thanks from those men, because they saw how normal a life someone can lead.
If you'd ever like to talk, please let me know.
Hugs!
Thanks, ladies. We talked with Amy at GBMC in the Prenatal Diagnostic Center right after the u/s yesterday (genetic counselor). She said she'll be keeping in touch with us, anything she finds, she'll forward to us. She's also going to contact our pediatrician so that she is in the loop & is trying to get us in to see a pediatric orthopedic for a "prenatal visit" so that we can bombard them with questions.
We told my parents, DH's parents & 1 of his sisters (she watches D' 3 days a week so we told her when we picked him up). My mom, the once completely computer-illiterate, jumped on the computer right after I told her everything on the phone. She called me back about 2 or 3 hours later to tell me things she found, give us more re-assurance that he'll be different but OK, & suggested to join a FB group she found a link to (& I did, it's a private group so no one can see what we post that's not a member). We haven't said anything on FB, to friends, neighbors or other fam yet. Every time we tell someone, it's just as hard as when we were told. We've decided that we most likely will not tell my 1 brother until after the baby is born only because he & his wife just found out they're expecting their 1st baby & we don't want to cause them any worry (IF their baby gets it, it would be just a fluke like this, it's just that telling them our baby has a problem would plant the seed in their heads that something could happen & I don't want to do that to them).
DH held it together all day yesterday for the most part. He said he started to tear up some during the u/s when they started to check the feet & I reached over for his hand & he realized I was crying already. He started to once again in the GC's office while asking questions & at the end said his main concern is "quality of life" & that can't be answered right now. The only other time was at home last night when he called his parents & he just couldn't hold back any more.
We both took benadryl to help shut down our minds & get some sleep but didn't get to bed until after 1am (needless to say, we're dragging pretty bad this morning!).
I was fine this morning until I was getting D' ready to go. Taking off his PJ's & looking at his 10 perfect little toes, I couldn't hold back the tears thinking that this lil guy will never have that. He'll never know any different but he'll have to deal with so much more negative stuff from people (kids & adults alike) than D' will just because he'll be different.
I know there was nothing we could do to prevent this but I just can't shake that nagging feeling that *I* let him down; that MY body failed to take care of him. I hope it's just a phase; part of the "grieveing process" as the GC put it. I feel so guilty. & hey, I'm the mom, isn't it suppose to be me that gets to jokingly throw the guilt trips on the kids by saying "I carried you inside me for 9 months & this is the thanks I get???
" 
.
(ETA: soory for the long venting reply
Didn't mean to carry on like that)
I can totally relate the the feeling of loss...failure...grief. It's all normal. You don't have the "normal" course of pregnancy, "normal" kid, "normal" whatever that is anyway...but we want it. And dammit, we deserve it and so do our kids. And that was taken from us. In different ways but the same nonetheless. And you have every right to be angry and sad and however you feel from day to day or minute to minute. That's healthy and OK. That doesn't mean you love your kid any less...and maybe it makes us love them and protect them a little more. I'm so sorry you're going thru this, but even though it's not the "normal" way, you'll find a way to make it your family's "new normal" and that will be amazing in a whole new way. BIG HUGS!!!