11:00 p.m. Hook up Charlotte’s last feed of the day. Set the rate a little faster than one hour in the hopes of hitting the sack before midnight. However…Charlotte woke up when I entered her room and ootzed for a full 30 minutes. Then she cried. I went in to find baby’s head covered in vomit.
Stopped the pump. Cleaned up baby, changed the bed, calmed baby down, put baby back in bed at around midnight. Feed left unfinished. Charlotte ends the day 1.5 ounces under goal. She takes another 45 minutes to fall asleep (12:45 a.m. or so)
6:45 a.m. My alarm goes off. Charlotte is still quiet. I check and she’s still asleep so I hop in the shower. First opportunity to wash hair since before Philippe left for Belgium. Get her medications and her bath ready.
7:25 a.m. Charlotte wakes up. Serve baby’s medications and, since I have to wait 30 minutes after Prevacid to feed her, give her a bath. She likes that.
8:00 a.m. Begin Breakfast Battle. Charlotte refuses the bottle. She really digs her bananas and rice, though, so we nearly finish those. Battle the bottle some more. Try putting Charlotte in her swing and feeding bottle. Manage to get 60 mls (2 ounces) or about 1/3 of her bottle into her.
9:00 a.m. (yes, breakfast took an hour). Put Charlotte down for a nap and hook her feeding pump up. Stay in her room, on the floor to make sure she doesn’t come unplugged. Fall asleep on the floor (sleeping through several phone calls and neglecting other important tasks.)
10:00 a.m. Charlotte’s feed finishes. Get breakfast. Make another batch of baby food. Talk to my friend Julie whose daughter Audrey (8.5 months) also refuses to eat, for different reasons, and who is doing the same battle, though still with the NG tube.
11:00 a.m. Charlotte wakes up. Get her lunch ready.
11:30 a.m. Begin lunch debacle. Charlotte refuses bottle. She lets me feed her peas and rice cereal. She gags on the peas. Finally she vomits back the peas, complete with bile (as there’s no formula in her belly) and a big bit of mucus.
Start over, putting her in the swing. Manage to get 80 ml. in her. While this is a triumph of sorts, the most she’s taken in days, it is a far cry from the nearly complete bottles she was eating in early December. Try not to cry. I swear when I tell Charlotte she’s so pretty she says “pretty” back to me.
12:15 p.m. Hook Charlotte up to machine to complete feed. This time she’s on her play mat so she can wiggle, but we can’y do any of her exercises because that’s a sure vomit-inducer
1:00 p.m. Feed finishes. Cross my fingers that she won’t vomit since I did it in under an hour (we used to do all pump feeds in 20-30 minutes, no matter what the volume. Losing ground there too.)
1:20 pm. Get Charlotte ready to go see Terry, the surgical nurse.
2:00 p.m. Arrive at Children’s Memorial, achieve rockstar parking. Run into Dr. Stewart, one of Charlotte’s surgeons. He’s amazed at how big she is. He reminded me that she was 3.1k when she left the hospital. She’s now over 6.6k, or more than twice her release weight. For the doctors, it’s all about growth. They could care less how she gets her nutrition.
Terry changes Charlotte’s Hollister dressing and we reschedule her button placement for the 2nd time.
2:30 p.m. Put Charlotte in car and pray she’ll stay awake ’til we get home because a) I need to feed her and b) she needs to nap. I’d like to do it in that order.
3:00 p.m. Having lost the awake battle, I wake Charlotte up inadvertently when moving her out of the car seat. Offer her bottle in hope that the drowsy baby will eat. No luck. But I do manage to really wake her up and piss her off, so now I have to wait until she dozes off again before I can plug feed in.
3:20 p.m. Plug feed in. Contemplate whether I can nap or have to do laundry. Choose laundry so I can change Charlotte’s sheets (She urped during morning nap. Yep, I’m letting her nap on a dirty sheet. Not feeling really good about that.)
3:40 Talk to Philippe in Belgium until feed finishes. Race upstairs to shut off pump and flush line without waking baby.
4:00- 5:00 p.m. Do some filing. Make phone calls (i.e. leave messages)about insurance issues with Charlotte’s Early Intervention case manager, the nice lady at Empire BCBS who actually helps us get things done, and OptionCare (special feeding supply company) case manager.
5:00 p.m Contemplate closing my eyes until Charlotte wakes from her excellent afternoon nap.
5:45 p.m. Open my eyes. Charlotte is still asleep?! Deal with laundry. Serve Charlotte her p.m. meds. Load dishwasher. Contemplate what’s for my dinner (leftovers not looking appealing tonight; ordered in last night; want pizza or something gooey).
6:15 p.m. Charlotte still asleep, but may be waking up. That would be about a 3 hour afternoon nap. That would be perfect if it had started at 2 p.m. Bedtime is usually 6:30, so we’ll be all messed up tonight. But, on the upside, if I can get a bottle into her now, I can do the last feed at 9:30, 10ish. Nice.
7:00 p.m. I have lost the dinner battle. In fact, I’ve been beaten, in every sense of the word. For the second time today, Charlotte has taken only 10ml (of 180ml). Sobbing, I set up the pump. Note: Charlotte should be going to bed right now. However, if I put her to bed, I can’t safely start the pump until she falls asleep. So, I’m keeping her up to pump her, at least for part of it. She doesn’t mind now, but I’m sure that the lost sleep doesn’t help the feeding situation. As soon as the dryer stops I’ll change her into pajamas so she’s ready for bed.
8:00 p.m. Charlotte has been put to bed. The sheet has not been changed because I’m simply drained. I feel like a lousy parent for putting my child to bed, twice today, on a dirty sheet, but I just can’t do any more.
I’ve decided that she’ll forgo her last feeding tonight so I can go to sleep at a regular hour.
I’ve also decided to skip dinner. Just can’t muster the energy to deal with it.
8:15 p.m. Charlotte fell right to sleep. I’m nuking a potato, spinach and slicing leftover steak. If Philippe reads the blog and knows I skipped dinner, he’ll be upset. So I’m eating.
9:15 p.m. Proofread blog. Upload pictures. Contemplate dessert vs. going to bed right now. Philippe has trained me, so dessert will win. Watching junky t.v. even though I rented 2 movies I really want to see. I know I won’t be able to concentrate on them.
To be continued…