Reflection

9.13.11

An ultrasound, one of many, but one that would change our lives as we knew it. At this point it had become quite routine.  But this day was different. On the eve of my Daddy's funeral, I lay in the doctor's office while my belly was covered in blue goop, waiting to see what Dr. Cedars evaluation was. And as it was, we had run out of amniotic fluid. Which meant an induction in the morning. So many thoughts raced through my head. I couldn't count them if I tried. I was told to walk over to the OB and let him know we needed baby girl to enter this world now. Easy enough right? I barely made it to the lobby before my OB's nurse greeted me. Dr. Haupt came in and said "So we're having a baby tomorrow?" It sounded good to me. I mean that was what we were here for, right? This ended up being one of those moments where life slaps you in the face and makes you realize that having faith in Him is having faith in His timing. This slap had happened a few too many times in the recent months. 

8 am:
 We were checked in and comfy, well for now. I couldn't stop thinking about him that day for obvious reasons. My heart was broken. He wasn't there.

1 pm:
 A few hundred people had gathered to celebrate the life he had lived. An ironic day it was. In life there is death and in death there is life. I have struggled with this more than some may know. Almost as if He said, I grant you your wish of a sweet baby girl but it comes with a price. I have healed that thought now because I know that everything happens with reason and purpose. Some we may never understand. But this is the way it is meant to be.

The hours that followed were filled with pain in more ways than one. A few visitors had come and gone but for the most part we were alone. Until she decided it was time.

8:48pm:
 One tiny push is all it took to bring her tiny little body into this world. Our first thought, how amazing it was to hold our sweet precious girl. Our second thought, her tongue was huge and seemed to stick out a mile long. We thought it was quite funny. She showed us very quickly what she thought about entering this world without getting to meet her Papa. Although, I know he was there guiding her though. Holding her every second before she got here to us.

The days that followed were some of the most uncertain days. She seemed healthy, was eating very well but the pediatrician had his suspicions. Too many physical characteristics were presenting themselves and he was uncertain of what it could all add up to. Ultrasounds, EKGs, scans, bloods were ran to hopefully figure this out. 

Months passed...

A referral to genetics landed us at Children's Hospital LA.
It wasn't our first visit as we had been seen by the Urologist prior to her birth for the known kidney issues. But this time we would walk out of there with a speculated diagnosis. Beckwith Wiedemann Syndrome. My head spun as words like malignant tumors, cancer, disease and risk were suddenly thrown into a conversation just as easily as THE or AND would be. A pile of paperwork and we were directed downstairs to have blood work drawn. Waiting for blood work, our good friend Mr. Wikipedia guided me through this disease. And so simply put, he said...  

Beckwith–Wiedemann syndrome is an overgrowth disorder usually (but not always) present at birth characterized by an increased risk of childhood cancer and certain congenital features.

 And then a phone call to the Hubs to inform him of what we had learned. He stayed strong for me on the phone but I know his heart sank and his head spun just as it did to me. I didn't sugar coat, I knew it would just hurt more later if I did.

Here we were with a chance of 1 in 13,000. Only 300 babies would be born this year with BWS. And it was this sweet tiny girl who got to be so lucky. Her smile molded by that big ole tongue would brighten up any room she entered.