Tuesday, December 13, 2011

The Surgery: Craniosynostosis Repair Day 2

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

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.


  1. Thanks for sharing! This post had me in tears...can't imagine what it was like to see your lo in that condition. Hope he is doing much better though!

  2. I have no words through my tears. God bless you all & baby Deacon is an inspiration! What a trooper. Thank you for letting us be part of your journey. xoxox

  3. wow, I'm in tears. I know it all ends well but looking back and reading these posts....my heart is melting.

  4. Even though I'm reading these posts a long time after they've been written,and I know it all went well, I still find my self emotioned to tears.

    lexapro birth defect attorney

  5. www.uritpitstop.com

    Thanks for sharing! This post had me in tears...can't imagine what it was like to see your lo in that condition. Hope he is doing much better though