Pedialyte Trial - Day 14 (Wednesday 12/17/08)

Weight 7.1 kg (15 lbs, 10.6 oz)
Oral Intake 10 oz :-(


The Good, The Bad, and The Ugly...


First, our day started off with The Good as Wednesdays always do. We met with Sherry, Shelly and Dana to discuss Sofie's progress. This was Shelly's last day with us, since this semester is over and she'll be moving on to new clinical experiences. But we are happy she got to spend the last couple of months with us and we'll miss her!


Everyone was really pleased with Sofie's progress taking the bottle and also with her skills with solids. Since she's continued to make good progress and hold her weight steady (she weighs the same today as when we started the trial), we decided to continue the trial for now. We discussed holding the pedialyte for up to 3-4 days at a time, provided she has good oral intake ("good" to me is at least 16 ounces for the day) and continues to have a good amount of wet and poopie diapers. To me "a good amount" means at least 6 wet diapers and at least 1 big poopie diaper each day. We also talked about trying to decrease her calories to 24 cal/ounce to see if that encourages her to take more volume.

I remembered back to when she was 100% orally fed after coming home from the NICU. She was hungrily taking at least 5 ounces every 2-3 hours around the clock, sometimes up to 7 ounces per feeding. That's a huge volume for a 3 month old to be taking. I think it was because CMH had not considered the volume displacement of the thickener and the end result of the recipe they had given us was fortified breast milk containing only 15 calories per ounce! Plain old breast milk and regular formula is 20 calories per ounce, so she wasn't even getting a "normal" amount of calories/ounce. My thinking is that's one of the reasons why she was taking in so much volume back then - to compensate for the decrease in calories per ounce. Maybe since she's getting 27 and 28 cal/oz milk now, that could be contributing to her fullness factor. Which would be easier for YOU to drink every 3 hours? 4 cups of Gator-Aide? or 4 cups of gravy? Who knows - just a thought.

The other thing I've noticed is that her daily oral intake is directly related to how much she stools for the day (sorry to be so detailed). Since she's riding the line for adequate hydration, we're going to try to be proactive with the stooling situation and just restart her lactulose on a regular schedule, instead of waiting for her to get constipated and then start it. Each time she hasn't stooled for a day or so, her oral intake has really dropped. Which brings us to The Bad.

Sofie didn't have a stool today, so I'm not too surprised her oral intake for today was really bad. It was the worst it's ever been. It also had a lot to do with the fact that we were at appointments all afternoon and we just really got behind with feedings. I have to remind myself though, that one "off" day is okay and she'll do better tomorrow. A now for The Ugly.

As you know, I was nervous for Sofie's appointment at the Special Care Clinic, more specifically for how Dr. R. would react and if it would affect her decision to let Sofie trial off oxygen. Before her clinic appointment, she had an OT appointment next door with Laura. Laura was really impressed with Sofie's improvement in oral skills and her oral intake. I was very pleasantly surprised. She said, "Sofie, you and Kinley have been talking!" I told her they had been talking and hopefully Sofie would continue to follow her little role model, Kinley. Laura was really happy with what we had accomplished so far, and said she would recommend we continue what we're doing, because it's obviously working. She said she looks better than she's ever looked. She sounds great and she looks healthy and she's so happy. I couldn't agree more. I was suddenly really hopeful that Dr. R. would also be pleased with her progress and I started to relax a little for her appointment at the clinic to follow.

But, oh, was it ugly. I got it right out in the open at the very beginning of the appointment. I can keep other people's secrets really well, but I can't keep my own. I just have to blurt them out and get it over with. So I started with a really positive attitude and told her we were really excited because we've been working hard on feeding and Sofie has made a world of progress in just two weeks. She went from refusing everything by mouth to taking an average of 16 ounces per day, up to 18 1/2 ounces and that she's also gobbling down her solids, up to 4 tablespoons at a sitting. Sofie threw in a smile for effect.

Dr. R. asked where we are making up the extra volume and I said we are just letting her PO feed ad lib and then giving Pedialyte at night to make sure she stays hydrated and I've been watching her hydration status very closely. The bewildered look on Dr. R.'s face was the beginning of the reaction I was fully prepared for. She was very angry. I won't go into details, which is why I waited to post this - so I could collect myself a little. But I heard several not so nice things, like that I was putting Sofie in danger, why would I ever consider this to be a good idea?, and that I could be doing irreversible damage to her development.

I knew going in there would be no convincing her this makes sense from a scientific standpoint. And I also know that, yes, chronic malnutrition can hinder proper growth and development, but 2-3 weeks of getting 60% of a normal caloric intake is not considered chronic malnutrition. So I just took the tyrade calmly and told her I fully expected her to feel the way she does, that I understand where she's coming from, and that she's just doing her job. I also told her we're going to continue doing what we're doing as long as we see fit. This went on for a while and she brought the CMH dietitian in to try to talk some sense into me. But eventually we moved on to The Good part of the appointment.

Sofie gets to trial off oxygen!!!!!!! I'm so excited! After Dr. R.'s reaction to the NG weaning, I really expected her to say no when I asked. But she did agree to let her try the 30 minute trial in the office. We took her off the oxygen and put her on a sat monitor during the appointment. She had to keep her sat at 93% or higher for 30 minutes to graduate to a home trial. She kept it steady at 95-97% for 20 minutes and then Dr. R. said that was good enough for her to trial off at home. So the next step will be getting a sat monitor delivered to our house from Apria, probably tomorrow. Then she has to keep her sat 93% or above for 24 hours to pass the trial. I'm really looking forward to getting the sat monitor and saying goodbye to the oxygen. With any luck, we won't have to travel with the huge oxygen tank when we go visit our family for Christmas. We'll still take an emergency travel tank, even if she does get the okay to come off, just in case.

It looks like Sofie will be "unplugged" from one of her tubes for her 1st Christmas!!