Walter’s surgery is fast approaching. In less than three weeks, they will cut him from ear to ear and begin chipping away at the front of his skull to correct his Metopic Craniosynostosis. This little boy who is always happy and loves to cuddle. When he's tired or hungry or frustrated, he doesn't flail around and make a scene (like his twin sister). Instead, he leans in, holds me tight, looks at me with his big blue eyes and somehow, our breathing syncs.
I love this little boy so much, it hurts.
As the date approaches, we have more and more doctor appointments and the reality begins to set in that our baby boy will be undergoing a very serious procedure. And for six to eight hours on February 7, Dan and I will be sitting in a special waiting room at Children's Hospital Los Angeles holding our breath. Waiting for the moment I can hold my baby in my arms, and lean in, so together we can breathe again.
This is every parent’s biggest fear. Or at least it's my biggest fear.
And I should say, it's also been a huge reminder of how lucky we are. Walter's problem has a solution. In fact, CHLA has an entire team of people dedicated to fixing this exact problem. They are the best and we are damn lucky to have them. To have answers. To have a solution. CHLA is a huge, well-respected hospital that is overflowing with sick kids and their exhausted parents. We pass each other in the halls and it's like we are all members of this extraordinarily sad secret society. Some of these kids will never heal. Some don't have a surgery that can fix all their problems. I can see it in their parents’ eyes, and that is too much for my heart to handle.
Our last appointment was Monday, and it was a lot of people telling me all the ways things could go wrong. Preparing me for the worst. There are the givens: that his eyes will be swollen shut, the withdrawal his body may have from the drugs, the pain he'll experience. The fact that he'll look very different. I've read posts from moms who spend the first few weeks crying because they no longer recognize their child.
Of course, we reviewed the risks involved. We had to sign papers acknowledging that we are aware of it all. They use words like "neurological damage," talk about the risk of him slipping into a coma and the possibility of Walter's ultimate "demise."
Is it just me, or do you agree that talking about the possibility of an infant dying is dramatic enough? Why the added extra dramatic vocabulary? Dan thinks it's official medical lingo. I think the person who writes the waivers at CHLA must be moonlighting as a scriptwriter for Game of Thrones. Death and brain damage are terrifying enough, thank you. No need to take it next level by calling it his "ultimate demise."
From there, we went off to pulmonary where they are desperately trying to get my 7-month-old in for a sleep study before the surgery. Walter’s nickname should be Tyrannosnores Rex. The fact that he snores already, paired with his breathing issues in NICU, has them concerned about sleep apnea, a condition they want to be prepared for going in.
The problem is that he can't be diagnosed without a sleep study. We were finally granted a sleep study at CHLA after being on a waitlist for months, when suddenly our insurance decided they wanted us to go elsewhere. Said appointment was cancelled and when I called the insurance-preferred location, they informed me that they don't treat patients under the age of 1 year and I'd have to go someplace like Children's Hospital.
And the dance continues.
From there I got to pin Walter down as the nurse made eight attempts to draw his blood. He's apparently got dodgy veins like his mother, but even with the long waits, the pokes, prods and lack of a nap, Walter remained his cool, calm self. Charming the nurses by flashing his two-toothed grin and big blue eyes. He never cried, aside from the blood draw. Which is more than I can say for me.
This next month I'm going to try and be more like Walter. I'm going to appreciate the little things. Take in the beauty, even amidst the sadness. And when things get hard I'm going to lean in, hold tight and trust that together we will find our way through this. One breath at a time.