'tbt' blog from 2.14.12- CHOP update

09 January 2014

TBT blog from February 14, 2012- CHOP update:

"Today was our 4th appointment at CHOP since hearing about Hayden's heart defect. It has become somewhat of routine for us now...the nerves used to be overwhelming the days and week leading up to the appointment and we often felt literally sick before going, not knowing what to expect or what they would tell us. Now when we go, we see familiar smiling faces and the entire ordeal is a bit less scary. Today was probably the easiest and shortest trip yet. I first had an ultrasound to check all the usual measurements and his position- he is head and face down- perfect position for birth! We also learned that his head is huge- just like his big brother! He is currently weighing 6lbs and has some hair coming in too! He is measuring, other than his head and weight, right on schedule at 34 weeks 5 days. This is actually great news since most heart babies tend to be born smaller than normal- so in this case, the bigger, the better, the stronger! We couldn't get any good shots of him this time since he is all ready in position for birthing but it was great to see what we did! 
Next I had a regular prenatal visit where we discussed the usual things pregnant women discuss with their doctors and also firmed up that Jackson and I are scheduled to relocate to the Philadelphia area the weekend of February 25th- which is already only 11 days away. This transition brings a plethora of emotions- I am anxious to get there so that I no longer have the worry of going into labor and not being able to deliver at CHOP, and of course I can't wait to meet this incredible little boy that has already taught me more than I could have ever imagined possible. But part of me is scared and afraid to be away from Rob during the most difficult time of a normal pregnancy, let alone one that comes with such emotional strain. I also never imagined I'd want this pregnancy to continue forever- but knowing Hayden is safest in me, I can't help but want him to stay right where he is. So, I guess it’s a good thing I have absolutely no control over this since I wouldn't even know what to wish for anyways...
Our last appointment today was the echocardiogram and hearing the results. We were told exactly what we expected- Hayden's heart remains the same- not smaller, or larger. So we stand still in the world of the unknown and are still praying for some miracle that his heart will grow to the size needed to function as a two ventricle muscular organ. The constant remains that he will be given an IV immediately following birth through his umbilical cord to keep him alive until the team of doctors and surgeons decides what surgical process they will need to take. He will undergo open heart surgery within the first week of life- and this will be to fix his aortic arch, which is severely narrow, and possibly start the reconstruction on his heart with the Norwood procedure. 
Thank you for following Hayden's journey with us- for your support, love, prayers, good vibes, hearts for the banner, cards, phone calls, monetary donations, emails, the list goes on and on and we are so incredibly grateful and blessed...thank you!!"

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