So we've been busy lately. Busy dealing with snot and other glamorous sinus infection/ear infection types of nastiness :( Any sickness we've experienced over the past few weeks is just normal baby stuff, miserable, but treatable everyday life stuff. It's nothing like the stories I keep hearing about expectant parents diagnosed with Twin to Twin Transfusion Syndrome. Lately, almost weekly, we are contacted by someone saying, "I have a friend who just got diagnose with TTTS. Can you talk to them? They are really scared." For me, when I was diagnosed, I was blessed to be assigned a representative from our hospital (Mercy Hospital here in St. Louis). Her name is Karen and she is a nurse on the fetal care team that is assigned to high-risk cases like ours. She was called into the room when we were given the diagnosis and the news was so overwhelming that day that her face and name were just a blur to me. The next day she called me and with the sweetest most caring voice said, "I just called to check on you and see if you had any questions now that you've had a little more time." She was so right! With more time, questions were finally surfacing in my mind, but my thoughts were so jumbled that I couldn't even figure out where to begin. She assured me that she would always be available for questions or concerns if we needed her, and she wasn't kidding! Karen held our shaking hands figuratively and at times literally through the rest of my pregnancy. She frequently listened to me cry and even led me to a quiet room to scream one day when I was so frustrated with the conflicting reports we were getting from different doctors. She was at times a voice of reason and when desperately needed a voice of hope, exactly what we needed! A few weeks ago we were able to visit Karen again and she held our healthy babies for the first time since we left the hospital 7 months ago! It was a joyous reunion.
Not all parents get to have joyous reunions like this. Not all families that Karen is assigned to have happy endings...and so we carry on trying to raise awareness of TTTS. So below is our next video.
I found Timothy like this at the end of a nap two months ago (at 5 months old). Yes, you can hear my Kentucky roots loud & clear in my voice. Turn up the volume though & enjoy the sound of the pacifier coming off Timothy's face! Hilarious to us! Hope you enjoy...Please spread this around far & wide.
Hi Katrina, my little sister Olivia (Lane) sent me to your blog last week when my identical twin girls were diagnosed with TTTS. I think we have had an incredibly easy time of it compared to you-- our fetal specialist caught the TTTS when I was just 17 weeks and 5 days and within 24 hours we were seeing a fetal surgeon and our girls were diagnosed with stage I. It was too early to do the laser surgery as they won't do it until 18 weeks due to the membranes not yet being fully adhered to the uterine wall, so we had to wait several days and by the time we went back to the surgeon this past Monday, our girls had already progressed to stage II. Our surgeon is very aggressive about doing the surgery as soon as possible, so I was admitted on Tuesday morning. We had a successful surgery with zero contractions or complications, both of the girls survived the night and Baby B's (our donor baby) bladder was already visible again by the next morning. We trust that she is growing as she needs to be and I am at home recovering from surgery. We'll be back at our fetal specialist's on Tuesday morning for the one-week checkup to make sure that B is growing and producing her amniotic fluid (last week Baby A was in the 80th percentile for size while Baby B was -0.03!), but we trust that all is going well. It's been a whirlwind week and a half- and we've been trying to spread the word about TTTS as much as possible, but I haven't actually known of anyone else who has gone through this, so it was really comforting to read your story, especially knowing that you were further along and your babies were in much worse shape when you went in for surgery. If your little guys could survive all of that, I know my girls can too! Congratulations on your beautiful family. Best, Lauryl
Hi Katrina, my little sister Olivia (Lane) sent me to your blog last week when my identical twin girls were diagnosed with TTTS. I think we have had an incredibly easy time of it compared to you-- our fetal specialist caught the TTTS when I was just 17 weeks and 5 days and within 24 hours we were seeing a fetal surgeon and our girls were diagnosed with stage I. It was too early to do the laser surgery as they won't do it until 18 weeks due to the membranes not yet being fully adhered to the uterine wall, so we had to wait several days and by the time we went back to the surgeon this past Monday, our girls had already progressed to stage II. Our surgeon is very aggressive about doing the surgery as soon as possible, so I was admitted on Tuesday morning. We had a successful surgery with zero contractions or complications, both of the girls survived the night and Baby B's (our donor baby) bladder was already visible again by the next morning. We trust that she is growing as she needs to be and I am at home recovering from surgery. We'll be back at our fetal specialist's on Tuesday morning for the one-week checkup to make sure that B is growing and producing her amniotic fluid (last week Baby A was in the 80th percentile for size while Baby B was -0.03!), but we trust that all is going well. It's been a whirlwind week and a half- and we've been trying to spread the word about TTTS as much as possible, but I haven't actually known of anyone else who has gone through this, so it was really comforting to read your story, especially knowing that you were further along and your babies were in much worse shape when you went in for surgery. If your little guys could survive all of that, I know my girls can too! Congratulations on your beautiful family. Best, Lauryl
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