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.
Jen, you are an outstanding mother. You have gone over and above to keep Colton happy and healthy. It isn’t anyone’s fault. It just is what it is, part of life’s complexities and it’s really, really hard. Colton is one happy little baby and he adores his mommy for taking such great care of him. I see it in his smile when he looks at you.
You have every right to feel exhausted which in turn may cause you to feel helpless. This too shall pass! Colton is getting the care he needs, thanks to your tenacity and wisdom. There is light at the end of the tunnel. You’ve been living with this stress for a couple of months now and have been amazing! But now…it’s time to take care of yourself. Give yourself a break. Let Tyler get up with Colton tonight. After you get a solid 8 hrs sleep, you’ll feel better and this won’t look so overwhelming.
You’re doing everything exactly as you’re suppose to. Life is a process. It sure would be nice if we had a crystal ball that could tell us what to do, but God would much rather we figure it out. 😉.
You are an amazing mother, daughter, wife and sister! We love you so very much. I think after today’s snip, you will see a difference but he still needs to get past the palette sensitivity. That too is a work in process. Pace yourself and know It will happen. Just wait and see.
I love you sweetheart. You are beautiful in every way!
Your mom’s comment says it all. While my time with you has been limited, when I have seen you with your children I have thought what an attentive mom! You may have read all the books, but one day you may find yourself writing one for all the other moms. I love your heart and am praying thanksgiving for the diagnosis and many happy days to come.
Jen, you are an amazing Mom! Addie and Colton are blessed. Prayers for this journey, for you, Colton, Tyler and Addie. We love you all.
Praying for you guys as you figure it out. Its amazing how hard these medical things are to figure out, but we learned that you, as parents, are his best advocates! There is hope and I’m confident you will find it!