Wednesday, June 5, 2013

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)