R=Right-sided
C=Congenital
D=Diaphragmatic
H=Hernia
One year ago, we shed many tears and asked "WHAT? WHY? HOW?"
One year ago, we were told that we should end our pregnancy...one year ago, I believed that, too! One year ago would be the start of us having sleepless nights worrying. One year ago we spent many hours planning our baby's death (we were set on donating his body to science). One year ago we found Breath of Hope, an organization that would give us hope! One year ago today we became part of an amazing community of CDH families!
And so the CDH roller coaster began!
Thinking back to December 30th, 2008 seems so surreal. I can remember every single detail about that day from start to finish, even what we were wearing and what we ate (as it was the last meal I had for days)! I can literally go on and on about December 30th...it will forever be the dreaded diagnosis day...much like December 24th, 2006 when Jared was diagnosed with hemophilia. Seems kind of funny to think that prior to Dec. 30th, our biggest worry was whether or not Jaime would have hemophilia. Hemophilia is NOTHING compared to the CDH Roller Coaster!
So now that I've reflected on what this day means to me, let's take a quick look back at Jaime's journey.
Jaime Albert Trost, December 30th, 2008, 19 weeks gestation, diagnosed with RCDH. Notice the big dark line on the right side? That's Jaime's diaphragmatic hernia. (Later we learn that it's not just a hole in his diaphragm, it's the area where his diaphragm does not exist at all.)
After two amniotic fluid reductions, (both causing pre-term labor), and at 34 weeks gestation, Jaime was born with RCDH and hemophilia via emergency c-section at 3:58 A.M. on Thursday, April 16th, 2009 at Good Samaritan Hospital in Cincinnati, Ohio. He was immediately resuscitated at birth and transferred to the RCNIC at Cincinnati Children's Hospital to be cared for by the CDH Team there. At 23 days old, Jaime had his first repair surgery (liver and bowels up). At 41 days old, he was extubated and we heard him cry for the very first time. He was discharged from the NICU (the first time) at 93 days old with O2 and a feeding tube! He spent 2 1/2 months at home, with trips back and forth to Cincy. In September he was in and out of Rainbow Babies and Children Hospital with respiratory distress and vomiting and diarrhea. Turns out that he had reherniated and Jaime was back down in Cincy admitted to the RCNIC. He had a second repair surgery at 194 days old (liver, bowels and kidney up) and was discharged at 217 days old. Since then, he's been working on feeding and developmental issues, all the while with a smile!
Jaime today at 8 1/2 months old playing with a few of his new things.
Jaime eating a biter cookie. Mmmmm!
Happy, lovable little boy, who doesn't know that the doctors once told us that he had a 20% chance of survival and that we should terminate our pregnancy, thus end his life...he's showing them, huh?!? His roller coaster isn't over yet, he still has a lot to over come, but nonetheless, we're so proud of our little CDH Warrior for coming as far as he has to date!!! We just love this little boy! :)
Your post just made my day! What an amazing journey you guys have been on. I was thinking what a privilege it has been to have followed your journey along the way. I have been rooting you guys on and praying since we first "met" on BOH almost a year ago. Jeannie from U of M still asks about you as well and is so happy for all of you. I admire your stength and great outlook on life, even when the chips are down, you are alway positive...Thank you for sharing your beautiful boys with us!!
ReplyDeleteCarrie and Noah
You've made Jaime's journey sound simple so far, but we all know it hasn't been easy. Each step of the way has been a fight, as all of us CDH parents know. From the devestating diagnosis to repair and finally home, but STILL having issues to over come. While each day comes with challenges, seeing the smile on Jaime's face makes it all worth while and you know that on Dec 30th, 2008 you and Tom made the best decision EVER, to continue the pregnancy, to give your baby a chance at life.
ReplyDeleteGod is good, isn't He??? We were diagnosed just one day before you! And we too, were thinking we had to plan the funeral of one of our children. But, with prayer and hope, and God's will, He decided that our babies would survive. Not sure why or how, but He did. We have survivor's guilt still, but we are so thankful! I can't tell you how good it is to see Jaime without any tubes or wires. He's so handsome and such a lucky little boy to have you as his mommy! We are so happy for y'all!!! Have a happy new year, and we look forward to seeing Jaime's progress throughout 2010.
ReplyDeleteMuch love,
Stephanie
Funny Sheryl, on January 7, we may be doing a very similar thing. Strange how much we can remember about the dreaded day, but how far the boys have come. Wow, what a journey. Happy one year:(
ReplyDelete