We have a nutritionist who is very interested in Clara's food intake. A few of the doctors (not all of them) are also very interested. Obviously it would be a bad situation for Clara to start losing weight. When she had her four month well visit, she weighed 12 lbs 15 oz. There isn't much weight for her to lose, so any weight loss is something to worry about. During her chemo and subsequent recovery period, Cara had not lost any weight, but instead fluctuated right around 13 lbs.
Now for the doctors to know what her food intake is, they would need a way to measure it. For some reason this seemed like a problem that they had never encountered before. Brooke would write down the approximate time that Clara was eating and the nurses would weigh Clara's "outputs" but this was difficult to interpret. To do nutrition you need hard numbers, right? This started talk of giving Clara a NG tube so that they could keep track of how much she ate. We compromised with pre-feed and post-feed weighing (which never really happened because she was asleep after eating and who wants to wake a sleeping baby?).
When it was time for Clara to prep for this round of chemotherapy and load up her body on valproic acid, we wanted to make sure that she actually got the correct dosing. She was really starting to reject oral medications and was developing an oral aversion. So we gave her a NG tube to help with the dosing. This was good because at this point she dropped off in her feedings (none during the day really) so we needed to supplement her food intake.
The day that we were going to start chemo Clara started feeling pretty sick. She threw up three times (the first was before she had even started the chemo). I wonder if the valproic acid wasn't making her sick? She really didn't get enough to eat that day, especially with the vomiting.
Yesterday and today she has really dropped off in her feedings so we are feeding almost exclusively by NG. She will eat in the early morning hours and maybe a snack at night. The way the NG feeding works is that we basically inject milk down a tube that goes from her nose to her stomach. We started by giving her 50-60mL per feeding and have gradually upped that to a max of 122mL/feeding today. We were only able to give her 497mL yesterday and 788mL today (plus a little extra from some breast feedings) That still is keeping her below what the nutritionist would want at 828-1035mL/day. She is still not losing weight though and seems to be trending up the past few days.
Unfortunately, tonight she was sick again and lost most of the last feeding as well as her valproic acid dose and her NG tube. That was quite an experience to have her NG tube come up, but so far we have managed and she actually jumped right to breast for a feeding (after getting cleaned up). We will have to place another NG tonight to give her a replacement dose of valproic acid as well as a dose of magnesium (which was low on today's labs). We gave her some Ativan to help with her nausea (this is the drug that also makes her really hyper). Hopefully the crying that I am sure will happen when she has to get the new NG will counteract the Ativan. Otherwise it will be quite a late night.