The Surgery: Craniosynostosis Repair Day 4 - Present

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

• 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
• http://sweetleighmama.blogspot.com/2011/12/surgery-craniosynostosis-repair-day-1.html
• http://sweetleighmama.blogspot.com/2011/12/surgery-craniosynostosis-repair-day-2.html
• http://sweetleighmama.blogspot.com/2011/12/surgery-craniosynostosis-repair-day-3.html

Day 4: October 27
HOMEWARD BOUND! Yahooooo!

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

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

• 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
• http://sweetleighmama.blogspot.com/2011/12/surgery-craniosynostosis-repair-day-1.html
• http://sweetleighmama.blogspot.com/2011/12/surgery-craniosynostosis-repair-day-2.html

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

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

• 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
• http://sweetleighmama.blogspot.com/2011/12/surgery-craniosynostosis-repair-day-1.html

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.