Charlotte's Journey Home

Just a Regular Kid, Sort Of

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Just Wait 5 Minutes

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Over the nearly 17 years that I’ve lived in the Chicago area many of my friends and family have asked me how I could possibly deal with the legendary, frigid Chicago winters. I’ve always answered that winters here are not that much worse than where I grew up (New Jersey), went to school (Rhode Island) and worked (New York). The wind tunnels on an NYC avenue can be as brutal as the wind off our lovely lake, but without the spectacular view of frozen foam. The cold in Providence on a rainy fall day can cut to the bone. And New Jersey, well, I don’t remember it being too cold, but I remember lots and lots of snow.

Really how we get through winters in Chicago is that we wait for days like tomorrow–after the coldest weekend of the winter (February 17-22, right when my mom, the ultimate ‘fraid of frigid person was visiting) and then a week of 30 degree windy cold, tomorrow we get 47 degrees. By Thursday it will be back in the thirties, but we’ll have had that one warming day.

As any Chicagoan will tell you, these balmy days in the middle of our winter remind us that winter doesn’t last forever and that spring will come.

What does this have to do with Charlotte? Everything, actually. Yesterday, Charlotte had a very bad eating day. She refused the bottle for all but 2 ounces at lunch, ate no solid food, and had medium to horrible reflux episodes after each meal. At midnight, about 30 minutes after her last feed, she screamed and vomited. No sooner had we gotten her cleaned up than she screeched, a sound that let us know she was in terrible pain, and vomited again.

Today was our balmy day, at least 2/3 of it: at breakfast and at lunch Charlotte willingly, even lustily, ate more than 4 ounces. I pumped only about 2 ounces at each meal. She playfully ate a lot of her solid food, too. As Laura, her feeding therapist (who fed her breakfast today) noted, days like today remind us that Charlotte can and will eat. She even enjoys it. Once we’re able to better control her reflux, winter will end.

And dinner, you ask? Well, she stubbornly refused her bottle, eating about 1 ounce. She ate a few bites of her lentils and rice. She played and laughed. And when I took her out of her chair to take her to bed, she screamed in pain and vomited so much that I thought she was going to start retching. Sorry to be so graphic, but it is a rather horrific, adrenaline-ized situation, especially because the little princess doesn’t cry that much.

A few other updates of note:
–We have our date with Children’s Hospital of Wisconsin. We’ll be heading up there on April 13. I think I can hang in for 6 weeks. As long as she doesn’t vomit on the flights to and from NJ.
–Laura swears that Charlotte made and “L” sound today. She is positive Charlotte was trying to say her name. I wouldn’t be surprised.
–Charlotte started to get the hang of the sippee cup some more with Laura, but she still won’t do it for me.

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Look Out Kitty Cats….

Sara is teaching Charlotte how to crawl up stairs. (She’s not even crawling yet, but we’re working on stairs.)

p.s. No, we haven’t changed Charlotte’s name. She just lost her “C.”


GI Update

We saw Charlotte’s GI doc, Dr. Sentongo, today. She weighed in at 16 lbs. If the scales from doc to doc are pretty even, that’s up 3 oz. from her 9 month check up at the pediatrician last week. She definitely looks like she’s gained some weight–her little cheeks are getting chubby.

We discussed at length our feeding routine (3 meals a day, always offering solids, I start pump about 20 mins. into meal and then lower dose as/if she takes formula; night feeds to catch up). He recommended that we do bolus night feeds for her b/c a) she seems to vomit more often with continuous and b) he wants her stomach to stretch/grow.

Other than that he was happy. He’s getting her info together to send to the Feeding Clinic at Children’s Hospital of Wisconsin (CHOW). He seemed concerned that they won’t make the appt. til they have the records, so I think he’ll have superRN Annie get right on it.

We also met with his dietician. She told me–revelation–that we can try to get our formula (NeoSure or Enfacare) covered by insurance. We’re going to work on that ASAP! That stuff is pretty expensive. Apparently since it is specially formulated for preemies and she gets it via G-tube, it might be coverable.

And, I left with a prescription for the Zevex Infinity pump. It is much smaller than the pump we have. I’ve heard it’s easier to use and more reliable. Apparently, if I invest in a larger version of my fabulous Skip*Hop diaper bag, the pump might fit in the bag. I can’t wait to get that going and improve our quality of life.

Next GI appt. will depend on when we get scheduled with CHOW.

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Sippee Cup!!!!!

Baby steps on the reflux front.

Over the weekend Charlotte showed off for my mother and took a sip or two from her sippee cup. She hasn’t done it again, but it was great.

(This is what’s known, Tracy & Lisa, as a “schmutzy punim.”)

And, just yesterday Charlotte finally started really eating and munching on her Gerber “stars,” little meltable solids kind of like Cheerios. She lunges for them like I lunge for Cheetos. It’s amazing to watch. She’ll refuse her bottle, push the spoon away from her mouth and grab the stars.

And, yesterday she also grasped, literally, the little “dipping stick” spoon-thing that our Speech Therapist gave us to try. She fed herself several bites of lentils before allowing me to feed her an entire 1/2 bottle of them!!!

And today? Well, she ate tons of stars (it takes 80 stars to make 25 calories, unfortunately.)

So, the bad news is it still sucks to feed her. The good news is, we’re not dealing with complete oral aversions.

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Mom’s Favorite Time of Day

Favorite Time of Day #1

Favorite Time of Day #2

Note–the stuffed duck is never too far from Charlotte’s side. We call this Everytime Duck. Not to be confused with Dinner Duck (Dining Duck) and Bath Duck.

Charlotte napped really well on this day (Friday, I think it was). Yes, she’s got a towel placed on the crib under where we place her head. This is in case of sleep-time vomits. She mostly doesn’t vomit in her sleep, but with the cold she’s had since last week sleep-time vomit is a fact of life.

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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.