Friday, November 29, 2013

Diagnosed with TTTS: One Year Later

One year ago today I was nearly 19 weeks pregnant & getting a routine every-two week ultrasound at the perinatologist (high-risk doctors) when everything suddenly changed. Our ultrasound tech handed us blurry images filled with black unlike any we'd ever seen before.  As she left the room what felt like a million people entered and we knew the news we were about to hear wasn't good.  That black in the images was fluid, way too much fluid around a little boy we called baby B, soon to be known as the "recipient baby," now known as Connor Lansden.  The rest of the news about baby A "the donor" now known as Timothy Austin was all just as blurry as the sonogram photos.  We were officially dealing with Twin to Twin Transfusion.  My instructions were to go home, get in bed, spend as much time as possible lying on my left side, drink lots of water, and not get up other than to go to the bathroom or the kitchen.  Our goal (as set by our Dr.) make it to next week's ultrasound with no change.  I now know the reason the goal was for "no change" was because there was no way to reverse what we were seeing, not yet anyway. Our only hope at that point was to keep it from progressing aka getting worse. As you know from reading previous posts we didn't meet that goal! Over the next week we progressed from Stage 1 to Stage 4. There is no stage 5!  More on that next week!

I am reminded today of the fear, anxiety, uncertainty, and utter shock I felt on this day one year ago. Yet as I look down from this couch I see a nearly 8 month old "baby A" pulling up smiling and I hear a very loud "baby B" waving his jiggling toys in the air.  This holiday season we are overwhelmed with gratefulness. We are thankful for advances in medical technology that made life saving intrauterine surgery possible. We are thankful for doctors, technicians, nurses, and hospital staff members.  We are thankful for praying, cooking, & generous friends and family.  Most of all we are thankful that the only blurry pictures of the boys that pop up now are due to two mischievous, fast-moving, healthy little boys!

Wednesday, November 20, 2013

A Joyous Reunion & A New Video

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.

Tuesday, November 5, 2013

The Debut of our Babbling Babies!

Alright so here's the thing...finding a video of our babies that will actually be amusing to the general public is harder than I thought!  As first time parents pretty much anything they do amuses us. They crack a smile or utter a "baabaabaabaabaa" and we think it's the greatest thing since sliced bread! Looking back over the last 7 months of videos-utterly pathetic. We are blinded by love! The videos feature more of the two of us acting like crazy fools to make our babies laugh than they do of Timothy & Connor actually doing something amusing.  Alas, I push forward with my quest to raise awareness of  TTTS and so *drumroll please* the internet debut of the two cutest little survivors on the planet (completely unbiased assessment obviously)...a video of our boys at 5 months old (back in September 2013) doing some pretty exciting babbling (okay so it's mainly Connor in this one but you get the idea)! Enjoy (please?) and share to spread awareness of TTTS!

Monday, November 4, 2013

We're Back...Spread the word!!!

We're back!!! After several months just learning how to be parents to two amazing twin boys we're ready to start posting again.  We have guarded the privacy of our boys carefully while still wanting to share photographic evidence of our great joy and pride for our boys.  We have yet to publicly post any videos of our boys but that is about to change for a very good reason!!! It seems that each week we encounter a new story of a couple dealing with the same nightmare we did but with far less information than we had.  I am sickened to learn how many medical professionals are clueless about TTTS across our nation and world!  With each visit to our pediatrician the Dr. tells us, “If I didn’t know your history with TTTS, I would never guess what Connor & Timothy went through based on how healthy they are now!”  Multiple times he has encouraged us to start sharing our story to raise awareness of TTTS.  It’s time!!! We’re ready!!! Our medium for raising awareness: Youtube & my blog. I’ve never really understood why so many Youtube videos featuring twin babies have SO many views but they do! Millions! We are a culture fascinated by multiples! So why not use that fascination for the power of good!  Starting very soon we will begin posting videos of our twins with the hopes of raising awareness of TTTS.  PLEASE help us get started by sharing our pregnancy announcement video that we made long before we realized just how complicated the pregnancy would become.  I'm not gonna lie if we end up on Ellen all my dreams will come true-ha!  

****Even now as I type this Jonny is messaging back and forth with a woman who is forced to decide whether or not to have the same Laser Surgery to save the lives of her triplets despite the fact that doctors are conflicted as to whether or not the mother's life will be in danger. Please pray for her!**** 

We're already have 4,644 hits on this video...let's get some more & start raising awareness of TTTS!!! 

The boys turned 7 months old on Sunday, November 3!!!  This tired twin Momma hasn't had time to update the monthly photos yet (our boys didn't exactly get the memo about time "Falling Back" & boy am I exhausted!) For now enjoy these 6 month photos and the "outtakes" that show it's time for me to hire a professional! 

As always check out the TTTS Foundation Website to learn more about Twin to Twin Transfusion Syndrome.