02/19/2014 05:45 pm ET Updated Apr 21, 2014

On the Other Side of Craniosynostosis

He smiled. The morning after having his skull partially removed and completely reshaped -- as he began to swell into a chubby version of himself, his eyes nearly shut -- my son smiled. And I felt that sudden laugh-cry-choke that I've only coughed out a few times in my life, when things took an unexpected happy turn in times of great distress. The love of my life, the only person on Earth who IS me, saw my face and smiled. It was going to be okay.


Our little Sumo with ink on his head and tape covering his IVs.

And it is now. One month post Craniosynostosis surgery, my husband and I have plowed through Broxon's recovery with our heads down, hands together, and hearts full. Our baby boy has exceeded all expectations, and shown us what pure joy feels like. Pure joy on top of sleep deprivation, worry, and an underlying sadness... but still, the joy is at the top.

And so, here are tiny bits of our experience, in photos. This is my follow-up to this piece. For other families who've just gotten The News and want to put real images to your upcoming journey, we hope this will bring comfort (one in 1,500 to 2,000 families get this diagnosis). You WILL get through the rough days after surgery and realize (just like your doctor probably told you) that this really was harder on you than on your little one. Your child, too, will smile much sooner than you'd think, and get back to his or her normal self. But with a beautiful, perfectly round head. **

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When we first got to our son in recovery, he was in a drug-muffled panic. We were VERY disappointed that our request to be there as he woke up was not granted. But, the nurses immediately helped me hold him, and he calmed down as I sang to him.


His bandage remained on until we were discharged from the hospital.

Broxon started to swell at the end of the second day and into the night. We can't stress this enough -- hold your baby as much as possible. Not only is it comforting for you both, but it really does help relieve the swelling. The first time (and almost every time after that) is incredibly scary, as his head will feel like a water balloon, but do it anyway. I was terrified of his eyes swelling completely shut, but our son's never did. We used a Boppy Lounger so he could lay at an angle in our laps (and look like royalty as we carried Prince Brox around his bed).


"I'm gonna be just fine, mom."

We had one particularly difficult day: lots of vomit and crying. The big lesson there: Burp your baby! It's easily overlooked because picking them up after every feeding is an entire production. But since it was difficult for Brox to latch for a few days, the bottle feeds gave him quite a bloat... which eventually erupted. Also, once you're comfortable moving your baby around, swaddling will extend catnaps, and a noise machine will help drown out monitors and the (many) nurse visits.


Quality time with dad in an upright position.

We were in the hospital for five days, and his swelling started to dissipate at the beginning of day four.


Still swollen, especially in back.

Once we were discharged, we let Brox sleep in his Boppy Lounger for another week. The only pain medication he got at home was Tylenol (suppositories), and even in the hospital, all he was given besides Tylenol was Motrin. Tough little cookie.


Home (day 6) and still an alien-shape to his head... but happy as ever!

He had the surgery at 3.5 months old, and as soon as we got home, he started hitting all kinds of new milestones -- grabbing and rolling over, his way of proving his resilience. And Broxon's scar will forever be a badge of his badassedness.


One week before / Two weeks after.

We thought this onesie was a nice touch... hey, we do live in LA!


**[Our son's head truly is beautiful. He had a Cranial Vault Remodeling (CVR) for Sagittal Craniosynostosis at Children's Hospital of Los Angeles under the care of Dr. Mark Krieger (neurosurgeon) and Dr. Mark Urata (plastic surgeon). Team Mark rules.]