I haven’t shared much about this part of Colton’s story but the more I do, the more I’m discovering the vast net of support, shared exhaustion and encouragement.
I know I have it generally good. I am healthy, employed, married (and actually like who I’m married to), and have two beautiful children. We live in a home we love, have a wide net of friends, and vacations planned. But that doesn’t mean my life feels easy right now. Actually, this is probably one of the most difficult seasons I’ve ever experienced.
Colton has all kinds of issues with his mouth: three upper lip ties, a posterior tongue tie, and a high, extra-sensitive palate which causes hyperactive gag reflex. All of this has resulted in lots of tension in his face (homeboy can suck in his bottom lip so hard you can’t even tell it’s still there). He’ll be six months old tomorrow and we were just diagnosed a few weeks ago. Over time, these issues have made eating increasingly more difficult.
We made jokes early on about his disinterest in pacifiers. He did not like the bottles we used effortlessly with Addie (or the 8 different kinds we tried after that). And then came the big, flashing sign — his early weight gain tapered off and by the time he was four months old, he had dropped to the 6th percentile. Our pediatrician didn’t seem too concerned but my mommy radar was going bonkers. On my drive home, I called Tyler and then immediately called a lactation consultant. What is happening? Why is he waking up so often to eat yet dropping off the charts?
I say this delicately because I know his health is generally outstanding and we are truly grateful for that. But this has been hard. Watching your kid nearly fall off a growth chart when your one job is to help him grow SUCKS.
Before we were properly diagnosed, I tried EVERYTHING to figure this little boy out. (If you know me even remotely well, this will not surprise you.) I had Addie sleeping through the night at 8 weeks so this felt so confusing, unsettling and if I’m honest, I was pretty frustrated. I read all the blogs, all the books, prayed all the prayers. Maybe he’s too cold at night? Maybe he’s too hot? Let’s unswaddle one arm. Let’s let him cry. Maybe if I held him while standing rather than rocking, he’d settle. What if our bedtime routine isn’t consistent enough? Maybe I should take more fenugreek? Should we move him back into our room? Did we travel too early and push him too hard? Maybe if I buy EVERY SINGLE PACIFIER that Target sells, I’ll find one he likes!
I would get so excited sometimes, thinking I was onto something with a little tweak to how we cared for him which just feels foolish now. I was so desperate. Waking up five times a night for six months was/is not fun but looking at his little limbs and the numbers on the scale is heartbreaking.
We now realize that he was taking less and less milk over time as a result of fatigue and the physical limitations of his mouth composition so in turn, I was producing less and less. And when we learned this, we could have chosen to switch to formula but this kid won’t take more than an ounce or so from a bottle. So here we are.
After a four week wait, we reached the week of our appointment with a specialist. This doctor was going to take two hours to fully diagnose the issues at hand and we’d walk out with a plan in place. THANK GOD. And then… he got sick. And because of the number of infants in the clinic’s waiting room, we couldn’t keep our appointment. Another three weeks until the next opening.
We finally saw the specialist last week and she took two and half hours studying Colton, talking us through her diagnosis and ultimately, we decided to move forward with the first of two recommended procedures. While it was difficult to watch him be held down, poked and clipped, the moment I cried came when the procedure was over. His cry… it sounded different. Rounder, fuller. My son’s cry had changed because he could actually lift his upper lips the way other babies can. I lost it. I think because it gave me hope that he wouldn’t be hungry all the time anymore.
No parent should have to watch their kid be hungry and not have a solution to remedy the problem. Not Jenn in Seattle. Not the single mom across the world. Not the dad next door. I have a renewed fire in me for feeding children everywhere.
His next procedure is in an hour and I am a mixing pot of feelings. I’m terrified it won’t make any difference. I am hopeful that it will. I am disheartened that we didn’t catch this sooner (yet who can I find fault with? Myself? His pediatrician? The multiple wellness consults we got at the hospital when he was first born? There’s no clear culprit in situations like this.)
I don’t need any pity — that’s not why I’m writing this. I think I would like you to join me in keeping hope alive though. Colton is hungry. We are tired. I need to be reminded that it’s all going to be okay and we are doing enough.