John is Just Right: August 2013

I eventually will go back and "repost" John's pre-birth story and how we found out about his missing bones, but for now I'll just pick up where I left off of the previous blog that is now sadly lost ...

So after we found out about John's condition I became a google crazy lady. I mean I've always been the person who is like "google it" if everyone is dumbfounded on an answer or a place to eat or if I have some ailment; Matt says I earned my MD at Google University :). However this time I was googling something new each second it seemed. I would google radial aplasia, missing radial bones, bilateral radial dysplasia, anything I could think of to find more information on our first son's condition. I was trying to grasp what life would look like, what would he be able to do, and what can be done to "fix" him.

I remember that day when the ultrasound tech looked at me and said "he doesn't have one of his bones". You see usually the ultrasound techs are nice and quite and smiley. They never give you a diagnosis, just a sweet smile and goos and ahhs at how cute the baby is. However this tech felt sorry for me. Maybe it was because I already had tears streaming down my face because Matt was having a hard time finding the office, and I was taken back to a room where we the "fancy ultrasound" was that would seal the fate of John's arms before he could get there. When she announced his bone absence in the nicest, sweetest, most sympathetic way possible, my super positive butterfly and rainbow attitude kept saying "Oh that's no big deal they can put a rod in his arm I'm sure". I just wanted to fix whatever was wrong with my unborn son. I was ready to give him my own bone even if it would be 29 years ahead of the growth rate of the rest of him :)

Well as I googled away figuring out how can we fix this news of unexpected missing parts of our precious little man, I found a surgeon in Baltimore. Dr. Shawn Standard became hope for me... I know I know that my hope is in Jesus, but it is Jesus that gives doctors their wisdom right? Ok so maybe not my hope, but Dr. Standard became what Justin Bieber is to all my middle school cheerleaders :).

Matt and I thankfully, and miraculously, had the same spring break even though he was at a public school in a whole different county from the private school I was at. So I planned the coolest road trip up the east coast from Savannah's river walk to Virginia Beach to Baltimore for some famous crab cakes to the final stop in the capital. Spring Break 2013 because the Radical Ruta Roadtrip, did I just use Radical? Oh well :).

Of course we stopped in some really cool places and cities, but I was most excited about Dr. Bieber, opps I mean Standard :)

As we waited in the waiting room to meet with the rock star doctor that would help John, I began to get that giddy nervous excited feeling that fills your stomach the night before a long awaited first trip to Disney. "Would this meeting meet all of my expectations? Would Dr. Standard be able to "fix" John's arms?" I couldn't help to wonder so many thoughts in that waiting room.

Finally we got to meet with the doctor and show him the many ultrasounds we had of our son. "Does he have his thumbs?" He asked after the small talk of how far ultrasounds had come. Didn't He know we aren't here for his thumbs... It his arms Doctor I wanted to remind him... didn't you see the ultrasounds, did you get us mixed up with another patient, I began to wonder. That was the point where he said the arms should not be our concern, but a syndrome that involves blood and the heart and other organs.

and we thought it was just his arms.

I began to grieve all over again, grieve and google. Dr. Hope, Dr. Bieber, became Dr. grieve all over again, Dr. TAR ... and that's all I could google: TAR symdrome, and google I did. I would google TAR syndrome and read a new website, a new blog, anything I could find, which wasn't much. 1 in 250,000 babies have TAR and most don't survive. I would google and cry, google and cry, and then say maybe he doesn't have thumbs. So we began to pray for NO thumbs. That's right people we wanted a son with eight fingers. I remember driving by a sign by a catholic church talking about when a baby have ten fingers in the womb and I was like unless they have eight. People would ask what to pray for and I was like, no thumbs. I mean that's normal right ... ha.

Between all the praying for eight fingers and googling, was when we realized that a C-section would be the best way for a TAR baby to be born. Something about coming through something the size of a Nalgene bottle being traumatic when you have low platelets. That was the day that I knew I would not be hearing "PUSH..ONE MORE TIME... I CAN SEE HIS HEAD, WE JUST NEED ONE MORE PUSH". I wouldn't be sweaty and remembering how to breathe and pushing my baby out the way I had thought the way I had "planned". I wouldn't have my right of passage as a woman, but I would be helping those platelets if he had TAR.

We didn't know at that point if John did have TAR, but we knew it was a possibility and that was enough for me.

Each of our monthly ultrasound we would look for those little thumbs never being able to see them.

You will see with the rest of the story that Dr. Standard, who had become Dr. Worry all over again, really was Dr. Fabulous. If it weren't for Baltimore we would have never had the C-section, we would have never thought to pray for John not to have thumbs, we would have had a much more difficult road. So I will always remember Baltimore... not only for the most delicious crabcakes ever, not only for grieving all over again, but for that question "Does he have his thumbs?"

Thankful for Baltimore.

John is Just Right

Friday, August 9, 2013

Baltimore

lost blog