Tuesday, December 13, 2011

The Surgery: Craniosynostosis Repair Day 4 - Present

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

Day 4: October 27
By day 4, it felt like we had been through a war. We were exhausted (mentally and physically), beat up. But our little man was rearing to go. He was wire-free (we were calling him Deacon 2.0) and a smiling ball of energy. It was like nothing had ever happened to him. It's absolutely amazing how quickly he recovered.

Today: December 13
Almost two months past the surgery and Deacon is doing better than ever! The scar is completely healed and the dissolveable stitches have all come out.
And the most amazing part is how quickly he has caught up in his development. Almost immediately after we returned home, I began to notice how much more alert he was. he had a twinkle in his eyes that hadn't been there before. He became interested in solids and began eating purees for the first time a week after he came home. His hair began growing at record speed. He began reaching for things and holding on to them. He's teething now. And just recently he began putting weight on his feet. We found out during a post-op appointment that when they went in to operate, they saw that his brain was pretty compacted and blood flow was definitely limited. That explains a lot of the "delays" that I picked up on before the surgery.

Modern medicine and technology is a beautiful thing. I am so thankful that God blessed our doctors with the knowledge and true genius to do what they do. I could never thank them enough.

And now we are here - on the other side of Craniosynostosis. Happy. Healthy. Healed. And thankful each and every day.

The Surgery: Craniosynostosis Repair Day 3

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Day 3: October 26
Day 3 came and it was finally time to remove Deacon's head wrap. The doctor's felt that removing it would help with the swelling and may even help reduce his fever. They were right : ) One by one the tubes and IVs began to come out. It was also the first time we got to take a look at his scar.

I'd be lying if I didn't say it was a little shocking. I knew he was going to be cut from ear to ear. But actually seeing it broke my heart a little. All those stitches in that little head. But by this point he was doing so well. Eating, peeing, smiling. And the new shape of his head was absolutely astounding.

Why, what a round head you have!!
Removing the head wrap made a HUGE difference in his swelling. It immediately began to go down. His eyes would get a little swollen when he would sleep (especially if he slept on his side). But he was SO much happier now that he could see the world around him. Everything was roses from this point on.

The Surgery: Craniosynostosis Repair Day 2

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Day 2: October 25
Day 2 was the worst. Deacon woke up swollen. His eyes were swelled almost completely shut. He would cry out in pain when his meds would begin to wear off. He began running a fever. The only thing we could do was hold him, kiss him, and tell him everything would be OK. Our doctor said that he was upset not because of the pain, but because he couldn't see anything. He needed to know the world he knew was still there. He needed to smell us. To hear us. To feel us. It was heart breaking. In the afternoon, he was doing well enough to be transferred out of the PICU.

Our family began coming by to "relieve" us so we could grab food and shower. It was a blessing! We always wanted someone there with Deacon for when he woke up, got upset, or just needed a snuggle. The love in that little hospital room was palpable.

The evening of Day 2, Deacon began to "wake up" a little more. He was off some of the strongest pain killers and his fever had dropped slightly. He started kicking like he was playing in the World Cup finals. When we played his musical monkey for him he would begin to dance - even smile a little bit. It was amazing.

That night his fever spiked again. He began vomiting and took a few steps backwards. But by the next morning he was doing a lot better.

Day 2 was a roller coaster. I have to admit that a strange feeling came over me on Day 2. My baby boy was so swollen, completely unrecognizable, and I felt like I had lost him. Almost like the baby I had before the surgery was gone, and this was a new baby. I didn't have any less love for the "new" Deacon, but part of me missed the "old" Deacon. I felt like I was grieving. In mourning. I would go to his crib to get him in the morning and be surprised. Like after you dye your hair a completely different color and it is shocking/surprising every time you look at yourself in the mirror because you expect to see the old color? And it took me about a week after we returned home to realize that this baby is the SAME baby as before. He may look different - "fixed" if you will - but his insides were the same. This was the same baby I carried for nine months. The baby I gave birth to. The baby whose smile melted my heart. He was still my little man. And it was like a new joy filled my heart - the little boy I thought I had lost came back to me. No words can really describe what I felt over those days. All I know is that I never, ever want to feel that way again.

The Surgery: Craniosynostosis Repair Day 1

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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.