Detour and Today’s Picture

Sitting here listening to Charlotte’s Kangaroo pump on the monitor as it feeds her 80ml/hour for the next few hours. Hoping, praying that a) she doesn’t come unplugged and b) she doesn’t get congested and wake up and/or vomit.

Helmet refit today–no major growth. Our orthotist Pat is confident that Charlotte will be “discharged” from the helmet when we see Dr. Vicari in mid-March.

I’m wondering how Charlotte will feel when she can no longer sleep face down (the helmet gives enough room for her to sleep on her forehead without smashing her nose). I would love to get a photo of this, but don’t want to wake her up.

Feeding the baby: I imagine frequently that my lovely, caring, wonderful readers (you) sometimes think all my ranting about feeding Charlotte is pure hyperbole. (I’m sure you don’t, actually, but my mind wanders.) Some of you have seen her suck down an ounce and then refuse, pursed lips, head shaking, coy smile. Or you’ve seen her pitch a fit. Or you’ve had me cancel a date or be terribly late because feeding her is taking 2 hours. You may have seen her suck down her solid food and refuse the bottle. Most of you are lucky, you haven’t seen her vomit or had her vomit on you.

Here’s my main pain: Our lovely daughter has slept through the night since August, 12 hours every night. She only occasionally wakes up. In most ways, she is a totally normal, typically developing 9 month old. At this point, if it weren’t for the eating issues, we would be living a regular life.

We, however, still live the life of parents of newborns–one of us is up until after midnight nearly every night to pump her feeds so that gets what she needs. During the day, I spend so much time feeding Charlotte that play time, PT exercises, outings, and fun just no longer exist. I’m embarrassed to take her out, to bring her to your homes, I’m envious watching your kids eat.

And yet, I know you all have some idea what we’re going through (even if you don’t know it)–you’ve all had a child with a cold or flu who wouldn’t eat for several days. You know how hard it is. Now multiply that by months. Many of you have had kids who spit up a bit or who had some reflux; now multiply that by months, by 2-6 vomit incidents a day. Charlotte wore 10 outfits between Friday and Sunday. We won’t talk about crib bedding changes, my clothing changes, vomit-ridden hair, how much laundry we do, etc. It’s really not fun.

Sorry for my ranting. I’m thinking tonight of several new friends I’ve made through our feeding disorder detour on Charlotte’s Journey. Two of them have websites I invite you to visit. They are extraordinary mothers, just like every one of my girlfriends.
–Darshani’s daughter lives with severe GERD:
–Thida’s son has a serious medical problem that has led to his eating issues:
–One, my local pal, Julie, is sitting at Children’s tonight with her daughter Audrey who had a G-tube placed today.

They’ve all shared some wisdom with me. Essentially they’ve said the same thing, so I’ll quote Darshani (I hope you don’t mind) because she said it today:

Feeding issues are SO HARD. It is a basic instinct to want to feed your baby, and when you can’t, you have to grieve for awhile.

Thida said something similar in a comment on this blog recently.

All this to say, thank you for bearing with us as we battle Charlotte’s feeding problems. Please understand that if I don’t pick up the phone or I’m just not myself, it has nothing to do with you. Lack of sleep and loss of stamina are simply taking their toll.

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