It’s raining in boston: One mom’s thoughts in a waiting room

I could not have asked for a more appropriate landscape for today. Large windows to an endless gray sky. It’s not raining anymore which also fits. Today is a day of hope not despair. Today marks a new chapter in this story: his first syndactyl release. The doctors have continued to impress me at every meeting and I feel so taken care of – first by the Lord and then by everyone around me… the doctors, our family, our friends, and even our facebook friends whom we haven’t met have offered prayers, notes and encouragements that none have gone unnoticed.

I’m not exactly sure where to start… I think I’ll tell you about our morning today and then review the things I’ve learned the past couple days.

Jack woke up hungry at 2:52 a.m. He downed his bottle of pedialyte and then looked right at me and started reaching for me for something more sustaining. He was mad that I didn’t give in. We passed him back and forth and I finally got him to settle down about 3:45. We were hoping to wake up at 4:30 to shower and get some coffee before the day began. Seth woke me up at 5:30. HURRY! We ran around to gather everything, woke up the hungry beast and ran down the street to make it there by 6 am. Check in was simple and straightforward, and Lucy kept Jack mostly preoccupied via videos on Seth’s iphone. It was nice to feel like she was a part of us even though she isn’t here. We got him dressed in his oversized purple scrubs and met all of the wonderful people who would be taking care of our precious little boy. They all loved on Jack and we never felt rushed or uncertain about anyone.  Anesthesia came and they let me carry Jack to the OR and hold him while they put him to sleep. This was a dear moment for me. I hated thinking about my baby being sedated, but him and me are a unit and it was a blessing to be there for him any way that I can. My heart leaped into my throat when I laid him on the table and his small lifeless body was ready to be cut open and realigned. I am crazy thankful for God giving us Jack even though I have heard and read the word “deformity” too many times this morning in the papers I signed to release my son. I am amazed at the work God does in creating us. Watching Jack’s body grow has made me worship God in ways I never have before. I know we are created in His image… but its been cool to think how these two plastic hand surgeons are molding and creating fingers for my son. They are acting as the mind and hands of the Lord whether they know it or not. And I can worship God for that.

Its 3:15 and they are projecting another 1.5 hours. It is a slow surgery. I feel oddly at peace today. However, a woman was near breakdown in the elevator earlier because her son had an hour long surgery and I wanted to shake her. I realized by my intensity that I am on edge. I want to have compassion… I do have compassion… but hearing her say that made the reality that my baby will be on the operating table for 8 hours today. Praise God that it is not a life altering diagnosis or operation – – – that will come later – – –

We were able to walk back to our house and take showers and eat lunch. That was nice… I feel more prepared to hunker down for the long haul now of the next sleepless nights in the hospital. I’m praying that Jack will surprise us yet again and it will be no big deal – Ha! I am sure every Apert mom reading this is laughing at me. I can’t wait for this to be a memory. But you gotta walk through the valley right?

We did briefly meet another Apert dad this morning actually – that was fun. It was a little reminder that we aren’t on our own.

Dr Taghinia this morning, when I asked if he was worried about anything, responded like this:

“No, I’m not actually. I can’t remember the last time we did a phase I hand (least severe apert hand). The past 7 or 8 have been type III (like Jack’s).” These are the exact words a mom like me wants to hear.

There is one thing lingering in the back of mind today though. Tomorrow Jack will have an MRI done while we’re here in Boston. The most recent CT scan showed the the ventricles in his brain are quite enlarged. I am focusing on not jumping to worse case scenerio but am worried. I am so glad that Jesus tore the veil of the holy of holies and because he did I can pray to him through each of these seeming setbacks. So many are praying for our little man and I know that God hears us. It’s a little frustrating because I had a bear of a time getting the CT scan scheduled for a ton of different reasons… I just have to trust that God knows Jack’s body better than any scan or doctor could and so I can’t look back and complain. I release and move forward. We will hopefully meet with the neurosurgeon while we are out here this week. We’ll see though. The good news is that Jack does not need nose reconstruction surgery at this time!  The CT scan did show that his left nostril is actually open just a little bit. The hope then is that as Jack grows, the nostril will continue to grow and we can wait until the midface advancement surgery.

Lastly, I learned a little more about the amazing team working on my son:

Dr Taghinia and Labow are both plastic surgeons, hand surgeons, and microvascular surgeons. They will each take a side of Jack’s body and work as a team. Both men trained under Dr. Upton who is a skilled artistic surgeon who has an exhibit in the science museum here in Boston.

Dr Meara is the plastic surgeon who has his specialty in craniofacial deformities. He also has a degree in dentistry and an MBA.

Dr Proctor is the neurosurgeon who practices here at BCH and teaches at Harvard Medical School.

All four of these men are very approachable, knowledgeable, and real.

I am thankful.

 

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