Make Cyber Monday Matter!

Hey guys! I post so irregularly these days that I'm not sure I have any consistent readers BUT even still this is too good not to share!  Today is Cyber Monday and if you are like my family you'll spend some time on Amazon.com  Well you can make your shopping matter today & everyday this Holiday season.  By using this link you can choose the TTTS Foundation and .5% of all sales become a donation! https://smile.amazon.com/ 

Check it out!

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!

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.

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!

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. 

2 Months Old-Our TTTS Survivors!!!

Where do we begin catching you up!?!  It’s been two months since the boys were born and there has been a world of change since our last post.  Both boys are now home, growing & thriving!  We are exhausted yet unbelievably blessed! In the beginning after the boys were born my recovery from the C-section and from over 4 months of inactivity while on bedrest was overwhelming leaving me with very little energy to do anything extra…like blogging.  Going home with Timothy and having to leave Connor in the NICU was an emotional burden unlike any other I have ever experienced.  I still have a hard time talking about what it was like to not be able to touch, hold, and bond with my son Connor for the first several days of his life.  Just thinking about it still makes my heart sink in my chest and makes me sick to my stomach. I realize most people who read this blog are already “in the know” about our lives and how things turned out.  I assumed very few “strangers” were reading my blog but recently started finding out I was wrong. Apparently I left many readers hanging.  I apologize for neglecting you-the readers who have prayed us through a disaster turned miracle!  You deserve to hear about our happy ending or rather our new beginning!  So for now I will simply summarize the NICU stay by saying-Connor’s recovery was truly miraculous! 

After several days of pure misery that seemed to drag on and on things started moving very quickly. I will never forget the day they told me “by the time you get here tomorrow we’ll have Connor ready for you to hold for the first time”-meaning tubes and wires which kept me from holding him would be removed.  Going to the hospital that day felt like Christmas morning.  The feeling of finally having my baby boy in my arms, being able to kiss him, hold him tight and whisper I love you in his ear was all that I had dreamed it would be and so much more.  

Holding Connor for the very first time!

With each day following a new machine was turned off and more monitors removed until finally after 14 days (which seemed like a lifetime but I now realize was nothing compared to what most NICU families go through) we were finally all together at home under one roof.  

His recovery was so quick doctors were amazed. 

Finally together in our own home!  

Since then Connor’s checkup with the cardiologist showed that his heart has healed nearly 80-90% since being in the NICU!  The Dr. said that by 8-9 months of life his heart will be completely healed. The best part- the healing will happen on it’s own without any assistance!  Our appointments with specialists are over!!! We will only return to the cardiologist if our pediatrician detects a problem at a later date. Overall we have two “normal” healthy little two-month old boys! 

Our pediatrician keeps reminding us just how amazing our story really is. He has said things like, "You realize your story is newspaper worthy, right!?"  The fact that Timothy & Connor are now measuring only ounces apart is very rare after what they went through! He suggested that we keep sharing our story as it may provide strength for other parents facing the unknowns of Twin to Twin Transfusion. So if you are a parent facing TTTS (or know someone who is) and you've found my blog through a random search of some sort and you want to hear more details of our struggle and recovery that we've failed to include, please please don't hesitate to write me or comment below!  TTTS can be very lonely because it is so rare.  

TTTS was once viewed as a death sentence. It is amazing how far come in finding life saving measures like the intrauterine laser surgery I had at 19 weeks of pregnancy.   Awareness is key which was one of the main reasons I kept blogging throughout my pregnancy.  Yes, we wanted to keep family/friends in the know and yes we REALLY wanted prayer but we also hoped that maybe just maybe our story would bring new light to TTTS.  Jonny and I know that in the years to come we will commit ourselves to helping raise awareness and funding for TTTS research.  While we trust in God and are people of faith in our risen Lord Jesus Christ, we do not believe that it was our faith alone that healed our boys. Absolutely not! If so then why us?  Why not so many others who yearly lose one or more babies to this horror!?    Our faith wavered and failed many many times through this trial and yet our boys survived! While our faith and the faith of others who were carrying us to the foot of the cross through prayer sustained and strengthened us, God gifted many brilliant minds with the knowledge and skills needed to provide healing for our sons. God used people like Dr. Lim our surgeon at Cincinnati Children's Hospital, or Drs. Moore & Ott (of the Maternal & Fetal care team/high risk doctors associated with Mercy Hospital in St. Louis) who made the initial diagnosis of TTTS and acted immediately upon discovering we had progressed to Stage 4 in one week and would likely lose 1 or both boys without immediate intervention.  I say all of this not to discount the work God has done but to remind everyone that not all stories of "good" bible believing, praying, Christian families who battle TTTS have happy endings like ours.  We will keep you posted as we become aware of opportunities to support research or raise awareness.  For now spread the word...we've been amazed that there are even well educated medical professionals who are clueless about TTTS!  

Thank you for reading and praying for our family, for our boys.  We ask that you continue praying for Timothy and Connor as they continue to grow stronger every day. This blog will now likely turn to stories of the ups and downs of two sleep deprived people desperately trying to figure out this whole parenting twins thing. I can't promise my words will be coherent but who needs logical thoughts when you can provide cuteness like this...

Two months old on June 3!!!
Connor (left) & Timothy (right) 

Update on Connor

Update on Connor:

Connor is still in the neo-natal intensive care unit (NICU) on a ventilator, and will be for the foreseeable future.  Here’s an update on what’s happening and what we think happened with him.

The history: In the process of twin-to-twin transfusion syndrome, Connor was the recipient twin.  The recipient twin is usually the sicker of the two, because they start to go into heart failure due to severe fluid overload (hydrops).  Connor experienced heart ‘failure’ (different than his heart stopping or heart attack) at 19 weeks due to TTTS, this was the primary reason the laser surgery was performed as an emergency procedure late at night.

Since the surgery, Katrina had done a stellar job on bedrest, and after dozens of ECG’s, monitoring, and ultrasounds, 1-3x/week over a span of 17 weeks, his heart had showed good overall improvement, with some ‘mild’ damage (per our pediatric cardiologist).  Due to his history of heart problems, we expected Connor to experience some difficulty after birth, and anticipated a short NICU stay for him.

Fast forward to now: The boys were born at 36 weeks/4 days.  After birth Connor started to experience difficulty breathing.  He was quickly taken to the NICU, and his situation started to worsen, but in a way completely different than expected.  He started to experience difficulty breathing and had to be put on a ventilator.  Instead of having too many red blood cells, as anticipated, he had the exact opposite problem, he had too few red blood cells.  The doctors ran a bevy of tests, trying to rule out brain damage and other problems.  They finally landed on the fact that they think all of his problems are cardiac related due to his heart damage from the TTTS (twin to twin transfusion syndrome), which apparently is more severe than anticipated.

His current treatment plan:  The doctors think his main problem is right ventricular hypertrophy and pulmonary hypertension.  This means that the part of his heart that pumps blood to his lungs is damaged and not pumping very well.  Pulmonary hypertension means that the blood pressure in the blood vessels in his lungs is too high.  Because of this, he is having significant difficulty getting rid of carbon dioxide and having difficulty getting oxygen into his blood.  Therefore, the doctors are trying to ‘give his body a break while his heart heals’.  He is on a ventilator to assist with breathing.  He has nitric oxide through his ventilator to assist with gas exchange in his lungs.  He is on several medications to assist with heart function.  And the one that is the toughest: he is on a heavy sedative to keep him completely relaxed while all of this is happening.  They want him to be completely relaxed, so they want us to refrain from touching or talking to him, as this will stimulate him too much and his oxygen levels drop.

This will not be a quick process.  He most likely will be on the ventilator for an extended period of time.  We do have any idea when we will be able to hold, touch, interact with, kiss, talk to, or love on our baby boy.

Please be in continued prayer for him.  This is an incredibly difficult time for our family.