Hi Everyone!
This is my first time on this message board. I hope that I'm okay to create a new discussion, if not, feel free to delete. I looked back about 5 pages and couldn't find any topics related to this.
My husband and I recently found out that our little one has Turner's Syndrome (after going through the whole process). This is our (and my) first pregnancy and needless to say, it's not what we expected (I'm sure that many of you can relate). Is there anyone else that has experienced it? The biggest thing weighing on us right now are her odds for survival. She's a fighter (I'm 20 weeks today), but 95-99% of little ones with Turner Syndrome miscarry or are stillborn. We've had a number of checkups with specialists and they can't give us anything better specific. The fluid build-up around her is getting worse (not better, as we had hoped) and at our last ultrasound, she was measuring small (regular growth up until that point).
Just curious if there are others out there with similar experiences and thought that I'd introduce myself. It seems that I'll be part of this group now, if you'll have me.
Re: Turner Syndrome (and an introduction)
I'm not new. I just hate The Bump.
@ChickenOnSunday Thank you!
@AuburnGirlSC Thanks for being willing to share. I’m glad that there is hope for some little ones with Turner to make it. Out of curiousity, did you opt for genetic testing and they didn’t catch it or did you opt to skip? At this point, I’m weighing the value against the stress and am not sure where I fall anymore. Also, @ChickenonSunday mentioned that might be able to connect me with a FB group…is it just for those who are already born and struggling with Turner’s or are those of us who are on the journey able to join? Sorry for all of the questions! I feel a little bit relieved to be able to chat with someone who has been through it before to some extent.
@toriisalemon This makes me feel a little bit better about doing the genetic testing. That way, if she makes it, we’ll be prepared and able to do whatever we can to help. And your sister doesn’t resent getting the HGH? I think that would be one of my bigger fears if we make it to life!
@flerlgirl Thank you! In all honesty, I’m freaking out a little bit. I haven’t felt any movement since Friday morning (so 3 full days) which is a little bit out of the ordinary. Trying to remind myself that it’s early enough for that to happen and for everything to be okay. Tricky to do after a not-so-great U/S last time around. I guess we’ll find out for sure on Friday…Your signature gives me hope either way (I hope that’s okay and not offensive).
If you think of it, T&Ps are appreciated. I will update on Friday and let you know how it goes.
I'm not new. I just hate The Bump.
@AuburnGirlSC Thank you. I really do appreciate the information you shared. I don't think I'm going to join the Facebook group (feel free to read below for why - I really really am appreciative, I just don't think it's where I "belong" now, though I'm still trying to figure that out). I'm so glad that you're little one is doing well and I feels so enlightened in all of the learning I've done about a condition that I didn't know existed five months ago.
After a very long day yesterday, we found out that Serenity's heart has stopped beating. I was paranoid because I couldn't get her to move no matter what I tried (including cold, sugary things and lying on my left side) and didn't want to wait until our appointment on Friday so I got in touch with my midwife. They are going to induce me tomorrow. I guess this means that I once again "graduate" from this board and toward a loss board. This has been one heck of a journey. I am wishing each of you the best in your high risk pregnancies. I understand how challenging it can be. Thank you so much for your support ladies, and I hope to see you "around" in the future. We will likely still TTC at some point, but we need to get through the grieving process first and I have no idea what that will look like. We so appreciate your thoughts and prayers.
In all sincerity, does anyone know if there is an appropriate board that I can join at this point? I feel super lost and scattered and would love to connect with others who have been through this.
BFP#2 3/16/11, beta 138; 4/12 Baby/HB DS born 9/10/11 at 29w4d due to partial abruption and PTL
BFP#3 8/19/13 Another boy! 17P, modified bedrest and Nifedipine helped us have a termie! DS2 born 4/19/14 at 38w5d.
I'm not new. I just hate The Bump.