THE BOTTLE BATTLE
I recently came upon the online diary of a mom whose daughter suffers from GERD, or severe acid reflux. She chronicles her 4 month battle with the NG-tube, culminating in complete refusal to eat and finally the placement of a G-tube. While I haven’t shared the gory details online, I thought I’d pass on the link to Nitara, My Brave Girl. If you want more of a picture of what we endured (we= all three of us), please take a look at the link to “My Journal.”
So… now you’ve all read about Nitara and know why/how we made the decision we did in November. In many ways it is the best medical decision we’ve made for Charlotte. She’s steadily gaining weight and developing normally now.
Recently, however, Charlotte has gotten very fussy about eating. Up until December 20, she was taking 80-90% of her calories by mouth and we supplemented minimally. We had to place the G-tube because she no longer tolerated the NG tube, not because she was disinterested in eating. If she didn’t finish it was usually that she tired out.
Now I find myself giving her nearly 50% of her nutrition by tube. Bottle feeding is a 45-60 minute battle, followed by a 60 minute tube feed. She thrashes, screams, tosses the bottle. She displays all signs of hunger–sucking her hand, her toys; some interest in watching her bottle being prepared. But, then when we bring the bottle to her mouth she purses her lips. If you can get the bottle in, she’ll suck with gusto for a little while, then push it out again.
To say this is exhausting and infuriating is an understatement. And it’s only been going on for 3 weeks.
Why do kids refuse the bottle?
–Heart babies can be simply too tired to bottle feed. GI doc and Feeding Therapist have ruled this out because Charlotte took to the bottle quite well at 6 weeks old and really never fell asleep while eating after about 10-11 weeks old.
—Reflux. Charlotte has never really displayed textbook signs of reflux. Her periodic vomiting can usually be attributed to the NG tube; fatigue; overfeeding (i.e., parental error); congestion; and getting used to G-tube feedings. She’s been on Zantac since 6/27/2005 because she was 4 weeks early and had an NG tube, both classic conducers of reflux.
–Allergies. Charlotte is exhibiting no obvious signs of food allergies. She’s not losing weight, doesn’t have any skin issues and no bloody stool.
—Unspecified eating problems. Oh goody.
Dr. Sentongo is starting by changing her medication. We’ve discontinued the Zantac and have moved on to Prevacid. She’s had that since Thursday. If it’s going to work, it should kick in in the next day or two and we should see rapid improvement. Keep your fingers crossed. So far, no real changes. Dr. Sentongo is in close contact with Laura, our Feeding Therapist. If I don’t see changes, I’m to call her and we’ll plan next steps. I need to nip this in the bud before I go nuts and, more importantly, before we lose any more ground.
LIFE WITHOUT DADDY
Charlotte gets very excited when she hears Daddy’s voice on the speaker phone. Too cute.
The bottle battle is especially difficult without Daddy because I have to stay up to get the last pumped feed in (usually ending around midnight) and then get up with Charlotte whenever she feels like it (around 6:30 most mornings). Philippe and I usually alternate so that one of us has the opportunity to have 8 hours sleep. And he lets me sleep in on Saturdays to make up for his work travel during the week. Last night the cats staged WW 17 on and around my bed, so I didn’t sleep until after 1 am (bad kitties).
I can’t begin to thank all of our friends for their calls and offers to help me while Philippe is out of town. If I could let everyone who has offered watch her, I could go on vacation for a week!! I wish I could accept more help, but the G-tube and the pump and the feeding battle make it very difficult. What I really need is someone to be here to do the last feed so I can get a full night sleep, but I doubt I’d be relaxed enough to sleep if someone else were doing it. Go ahead, call me a control freak.
Little widget went to sleep at 6pm tonight. I had to finish her 5 pm bottle by pump. Then fed her at 8:30 pm and am now waiting until 11 or 11:30 pm to feed her again. I may have to wait a while longer as she has woken up and is taking a very long time to fall back to sleep. If I hook her up while she’s wiggling I could end up with a soaked bed when she disconnects herself. Meanwhile, she’s making very odd noises–she was congested and I took care of that, now she’ sworking hard to comfort herself, I think. She’s hiccuping, sighing, coughing, and moving around a lot in the bed. Who knows? I may give her 20 more minutes and then chalk it up to teething, and try Tylenol.
That’s life without Daddy–no parenting committee to consult.