Fifty Shades of Cray

How do I even begin?

If you know me in real life, you know that Henry is here. And he’s beautiful.

That was the thing that shocked me the most when he was born, exactly seven weeks ago, on February 28th: He was — and is — just gorgeous. We have video of me in the operating room, and one of the obstetricians is holding Henry up for me to see him, and all I can do in my drug-addled state is lie there and sob and yell, “He’s so BEAUTIFUL! Oh my god! Look at you! Look how beautiful you are! Holy SHIT!”

Me, seeing Henry for the first time, whilst on Valium

I only saw him for less than ten seconds before they whisked him away to the NICU to prepare for his myelomeningocele closure, but I was positively delighted with what I saw: Huge cheeks; an angry, smashed face; red fuzz on the top of his head. And he looked just like my husband. Ugh, I thought, relieved, thank God I didn’t have an ugly baby. 

I mean, come on. COME ON with this preciousness.

My heart skipped when I saw his feet — tiny, misshapen. He definitely has spina bifida, I thought. He has clubbed feet. He’s here. This is what spina bifida looks like, and I can’t un-know it. There’s no going back. But it was just a twinge of fear, and then it was gone. I don’t know if it was the copious amounts of anti-anxiety drugs the anesthesiologist kept siphoning into my body, or whether I was feeling the prayers that I had been begging people for for months at that point, but when I finally saw him, when I saw the opening in his back and his crooked little feet, all I felt, besides the tiny twinge of fear, was elation. Finally, I kept thinking. He’s here. After months and months of anticipation, at least now we could say that the hellish anticipation was over. Now we could start the life-long process of getting to know him and learning how to navigate his diagnosis. Now we could stop floundering in our helplessness and actually do something.

But I was stunned by his beauty, and shocked, to be honest, by just how normal he looked. My husband and I kept exchanging confused glances and saying to each other, “He looks gorgeous. He’s great. He looks like a normal baby.” My first impression of spina bifida was that this must be some messed up shit, since the nurses and the doctor who told us his diagnosis could hardly contain their devastation as they relayed the news. By the looks on their faces, I got the impression that he’d be either dead or horribly deformed. I thought his clubbed feet would look like little mangled chicken drumsticks. I thought his hydrocephalus would make him look like one of those aliens from Mars Attacks. I was bracing myself for a full-on Quasimodo baby, and I was shocked to see that he was a beautiful baby, not merely the sum of his various physical ailments. He wasn’t a diagnosis. He was a hearty, sturdy, strong little boy.

oh it’s just my hydrocephalus, NBD.

Soyeahanyway. He’s gorgeous.

I didn’t see him for the next 13 hours or so. I wish I could say it was really hard on me and I missed him dearly and was clawing my way down to the NICU to see him, but in all honesty, I was just tired and slightly high and greatful for the opportunity to take a nap and get something to eat, for the first few hours anyway. FYI, when you have a c-section, you’re not allowed to eat for twelve hours before surgery and you can’t eat after surgery either until you pass gas — whenever that is. Uhhh …

The nurse told me that and I was like, haha, yeah, so can you get me a cheeseburger? And then I realized she wasn’t kidding and I started hyperventilating. Say what now? What if I’m not particularly gassy? What if I don’t fart for a week? Girlfriend just shrugged at me and said they’d give me Bean-o, but until I farted they would only let me eat broth. BROTH. I almost fainted. On top of that, I couldn’t see the baby until I could walk to the bathroom and pee on my own. After twelve hours of mandatory bedrest, I was a peeing, stumbling, farting fool, rambling about my baby and NICU visiting hours and cheeseburgers.

Me, on my way to the NICU

And can I just say, apart from the not-being-able-to-see-Henry thing and the whole starving-and-willing-myself-to-fart-for-fifteen-hours thing, this c-section was truly an amazing experience. I can’t even remember how many times I literally begged my friends and family for prayers — not just for Henry, but for myself; that I, with my history of PTSD and my phobia of all things medical, would somehow miraculously escape being traumatized from having an inevitable (yet very necessary) c-section. And I want to say that I felt those prayers. I felt every single one of those prayers covering me and soothing me and encouraging me as they wheeled me into the freezing OR and jabbed me in the back with a needle. I thought I would be crying in fear, and I was completely calm. Steady. Ready to meet my baby. To my amazement, I didn’t cry once. (Although I did scream MOTHERFUCK! when they gave me the spinal block, much to the surprise of the attendings.) It may not seem miraculous to you, but emotionally I came out of that operating room completely unscathed — something I attribute totally to the power of prayer. There is simply no earthly reason I — someone who cries like a bitch during a routine cervical check — should have been that calm. (Other than the sedative they gave me, I’ll admit, but I’m talking BEFORE that. Unless the nurses slipped something in my IV and then it was probably valium AND prayer, which is also cool. But no seriously, it was like Jesus reaching down and giving me a big bear hug, and I cannot thank you people enough for that gift because it allowed me to be fully present when I met my son for the first time. What a precious, precious gift.)

right after his myelomeningocele surgery on the day he was born
Recovering like a boss

Oh, and compared to my vaginal birth with June, an elective c-section was a cakewalk. I didn’t even have to move off the bed. All I did was lie back, request a shitload of drugs, and let everyone else do the work. No pushing, no bullshit hypnobreathing, no screaming at my husband to apply counter-pressure on my back. Just a lovely drug cocktail and some nice warm blankets afterward. I know it’s surgery and super serious and I shouldn’t be flippant at the idea of very serious life-saving surgery, but for real, I’m lazy and I didn’t have to do any work; I would not be bummed in the slightest if I ended up with another elective section. Bring it!

Henry would spend the next 25 days in the NICU — an eternity for us and a drop in the bucket compared to some other babies in there — and he blew us away with his progress every single minute he spent in there. Like I said, we didn’t know (and still don’t know) the extent that spina bifida will affect his life. Some children can’t urinate on their own and need to be catheterized. Some have to be fed through GI tubes. Some can’t breathe on their own. Some are severely learning impaired. We simply don’t know how his diagnosis will manifest itself in his life, and there’s no GIF to convey the anguish I felt after his birth, wondering whether he would be one of those kids who would need extensive interventions just to breathe and eat.

(Okay, this GIF is pretty close. And this one.)

But like I’ve said before, Henry does whatever he wants, like a boss, and I have a feeling he’s going to blow everyone out of the water with what he can do, even if he has to do it on his own sweet time. Despite my fears, Henry survived the surgery. And then Henry successfully weaned off the ventilator. He ate like a total champ. He downed twenty mLs of formula, then thirty-five, then fifty, then 105 mLs (4 ounces, I think) per feeding, for every feeding, after that. He opened his eyes. He watched us. He smiled. He slept. He breathed. He ate some more. He had no apnea spells. He had no seizures. And to my absolute delight, he passed his urodynamics test with flying colors, which means no catheters for this boy, at least for the time being. Prayer works, yo. Your prayers worked. He healed. I healed. We spent the next month traveling back and forth from the hospital to deliver milk, to visit him, to finally hold him, to marvel at his progress. And every moment we weren’t at the NICU, we were at home with June spending time with her, trying to survive with part of our family missing, pumping breast milk and sleeping and watching a lot of Pawn Stars when we weren’t en route to or from the hospital.

There is so much I could share with you about the NICU, and how scary that time was, and how special it was at the same time, and how absolutely cray. I probably need to get some distance from it first before I reflect on it, but what I can say was that we were blanketed by prayer. Even though we missed our boy, even though we wanted him home with us and there was more than a few nights I cried being away from my little guy, I personally had the most amazing peace. I was assured by faith that he would be okay. And, selfishly, I was so thankful for the extra rest, for the opportunity to sleep through the night, for the assurance that Henry was being taken care of by a fleet of angel nurses and skilled surgeons. There was fear, but there was peace. And before long, we brought him home.

More updates to come.

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12 thoughts on “Fifty Shades of Cray

  1. what a handsome guy! so happy for you. I don't know you personally but a family member of mine does so I just kept checking the blog for updates. so happy to meet your little man. congratulations on your beautiful family. hope things keep looking up for you all!

  2. I'm so glad Jen posted a link to this on her blog. What an inspiring story! God bless you and your family. Prayers are going out to your little guy and all of you.

  3. Okay, so yanking myself out of my sleep-deprived state to notice that this was posted months ago WHICH I KNEW. I was reading it and thinking, "So, she wrote that great post with all the amazing insights before her son was born? How did I miss THAT???" Anyway, blame my two-month-old who's been tag teaming me with my two-year-old. My apologies. But he's still the very cutest. 🙂

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