The Surgery: Craniosynostosis Repair Day 1

Need to catch up? Here are links to all the Cranio posts:

• http://sweetleighmama.blogspot.com/2011/07/unexpected-journey-craniosynostosis.html
• http://sweetleighmama.blogspot.com/2011/08/surgeons-and-doctors-and-specialists-oh.html
• http://sweetleighmama.blogspot.com/2011/08/you-have-to-do-what-diagnosis.html
• http://sweetleighmama.blogspot.com/2011/11/pre-surgery-psycosis-preparing-for.html

October 24, 2011: Surgery Day
I didn't have to worry about setting my alarm because I never went to sleep that night before. I laid in bed until about 3 a.m., then decided to start getting ready. We had to be at the hospital at 6:00 a.m. - the surgery was scheduled to begin at 8:00 a.m. I took a shower, got dressed, made sure our bags were packed and everything was ready to go. My husband was snoozing like a baby : ) See, we deal with things very differently. When I am stressed, it seeps out of every pore of my body. One look at my eyes and you can see whatever I am feeling. My husband internalizes it and keeps a cool exterior. And sometimes {a lot of times} that bothers me because I take his cool, calm demeanor as not "caring". But that's not the truth. He feels it just as strongly as I do. He just knows he needs to hold it together while I crumble. He has a plan in his mind as to how things need to go and sticks to it. Even though I may freak out, he keeps us glued together. That's why we make the perfect team : )

At about 5:15 a.m. we hit the road, a sleepy Deacon in the back seat. We swung by McDonald's for coffee and Egg McMuffins. Daniel insisted I pour my coffee into the insulated cup he brought along (sticking to the plan he laid out in his head). I prefer a good styrofoam cup, but obliged because I knew he needed to keep his plan on the tracks. It seems silly, but at that very moment, we were doing everything we could to keep from crumbling into a million pieces. We arrived at the hospital just before 6:00 a.m. and headed inside. {Here we go...}

Why am I up so early?! Heading inside on the morning of Deacon's surgery

 Since we "pre-registered" the week before, we only had to wait a few minutes until they took us back to our room. Once there, a nurse stopped by and described what would happen over the next few hours. This room would be our "waiting room" during Deacon's surgery. She said things would start to move very quickly as they prepped D for surgery. She asked that I get him into his hospital gown.

Really, Mama? Purple? It's not really my color.

A good "before" picture of Deacon's head. Since it couldn't grow from side to side, it grew front to back at an abnormally fast rate.

Little man wondering what is going on

Over the next hour or so, our support team arrived. Grandma, Nana, Papa and Uncle David. Aunt Gigi was holding down the fort at home, watching Paigey. Everyone else was praying.

And just before 8 a.m. - right on schedule - an operating room nurse arrived to take Deacon back to surgery. And we all lost it. It was nothing the nurse did or said - all the nurses and doctors were nothing but kind, supportive and encouraging - but I felt like my heart got ripped right out of my chest. I couldn't breathe. If Daniel wasn't there to hold me up, I would have dropped to the ground. We prayed. We hugged. We cried. And we prayed some more. And then a pastor came in to pray with us some more. And in a much needed moment of levity, he began calling Deacon by the wrong name by accident. I corrected him - laughing through my tears - and we were all able to smile again. The waiting game had begun, and we all headed down to the cafeteria for a change of scenery.

A little while later Daniel and I headed up to the room. We didn't want to miss any updates. A nurse was supposed to call the room every hour to fill us in on how things were going. Right on cue, the phone rang as we entered the room. The nurse said everything was going well. She said it took some time to get all D's IV's in. I knew before hand that they would put him under full anesthesia before inserting any IVs. I knew he wouldn't be in pain. And she said they had to start the blood transfusion immediately because his counts were low. {Not sure if I mentioned before, but I had to donate blood a few weeks prior in case Deacon needed a blood transfusion during his surgery. I did a "directed donation" so they would have my blood to give him if they needed it. Ends up they did.} And when we hung up the phone a sense of peace came over me. I'm not sure if it was the security I felt knowing my blood - his mama's blood - was pumping into my baby's teeny tiny veins at that very moment just like when he was in the womb. Or if my body finally gave in to the exhaustion. But I could feel the arms of God wrapped around me, around my baby boy. And a peace rushed over my body. And the very moment I hung up the phone, I fell asleep. A deep sleep. A calm, peaceful sleep.Right there on the hospital bed.

After an hour or so, we got another update. this time from our Pediatric Neurosurgeon. His portion of the surgery (removing the skull from the brain) was complete and he said everything went perfectly. And just a little while after that, the Cranio-Facial Plastic Surgeon came in to tell us his portion (reshaping the skull, putting it back together with plates and screws) was also complete. And that Deacon was doing very well. They were closing him up, taking him to recovery for a bit to allow him to wake up, and then he would be heading up to the Pediatric Intensive Care Unit (PICU) where we could see him. I literally ran through the halls of Children's Hospital up to the PICU waiting area. They said it would be another hour or two until I could see him, but I didn't care. I ran. And then we waited. 

PICU Waiting Room. Halloween decor tried to make it look like a happy place, but believe me when I say that there was a lot of sadness and heartache in that room. We were waiting for our child to come out of surgery that we had months to prepare for. We knew he would be OK. But other parents were waiting to find out if their child would survive after a horrible, unexpected accident (i.e. car accident). It put things in perspective.

And finally - after what felt like a lifetime of waiting - I saw my little man being wheeled up the hallway. They still had to get him situated in his PICU room, but they said I could see him for a few moments before they brought him in. Daniel said I threw my phone on the ground (and everything else that was in my lap) when I heard the gurney coming up the hall and ran outside. I don't remember this. All I remember is seeing my little peanut.

My first peek at Deacon post-surgery outside the PICU waiting room.

The remainder of the day is kind of a blur. Deacon got settled in his PICU room hooked up to a million monitors. He had three IV lines, one pumping fluids, one pumping morphine and the last one left open for emergency access. His head was wrapped up like a mummy, with a single drain coming out the top to remove excess fluid and blood build up. At this point, he still looked like my baby. I could still see my little man through all the wires, bandages and cords. At one point he started to cry and I instinctively picked him up and Daniel and I took turns holding him for the next few hours. It was only later on that the PICU nurse told me that most parents are afraid to hold their babies after the surgery and won't do so for a few days. Nothing could keep me from holding that little man. He may have been tethered to a ton of machines, but the most important thing was that he was tethered to my heart and could feel my love all over his little body. Day 1 was long. Day 2 was even longer.