Monday, January 12, 2009
For a very long time, Charlotte weighed 15 lbs. (I know, another posting about weight. Do I think about anything else?) She was slowly getting taller but her weight did not change. She had tiny skinny shoulders and a huge head "like an orange on a toothpick." Her hair was thinning and getting lighter. I didn't see any of this. I kept taking pictures and spoon feeding her rice cereal. She looked beautiful to me.
Her doctor suggested we see a nutritionist who would help us learn how to "power pack" her meals. I had to journal everything she ate for a week and then we went in to the GI clinic. I remember thinking that written down, Charlotte's diet seemed pretty sparse and I fibbed a bit in the journal to make it seem more substantial. My exaggerations didn't help. The nutritionist was horrified at how small Charlotte was. She looked at her diet sheet and said it didn't begin to come close to being enough. She stomped into the hall and brought back a toddler with a g-tube, made me look at it and told me Charlotte needed one too.
I refused without a second thought. I told her that Charlotte was in the 30th percentile on the trisomy 18 growth chart. The nutritionist called her malnourished and said the other trisomy kids were too. I told her Charlotte loved to eat and I wouldn't take that away from her when she could do so little. The nutritionist went to get the Attending Doctor.
Dr. Jackson was much kinder. He didn't gasp and start dialing Child Protective Services when I said we wanted to try power packing first. He said that was certainly an option and gave me some handouts. He mentioned the g-tube as well and said that 95% of parents who get one wish they had done it sooner. Not for Charlotte I said. She loves to eat.
I called Zar and he stopped on the way home and got her a Strawberry shake. The seeds got stuck in the bottle nipple so I stirred it into some rice cereal. I tried to feed her every hour. Zar went and got a bottle of sweet potatoes, her old favorite.
"No" I said, "she said don't waste space with fruits and veggies. Fat only."
Charlotte ate butter. She ate sour cream and cream cheese and had olive oil mixed into her bottles. She hated eating. She would cry and seal her mouth shut, and we had to keep shoveling it in.
"Open up!" we'd say, "do you want to eat this delicious fat or do you want a feeding tube?"
Charlotte got pneumonia. We don't know whether it was from all the force feeding. Days went by and she had a tube down her throat into her lungs and didn't get any nutrition besides fluid. She was unconscious and pale. When she started to wake up we told the doctors we were ready for the feeding tube.
"She's not healthy enough." they said. "She won't survive the surgery."
In March 2007 she finally got the G-tube. The night before, I placed a little blue stone on her tummy to show Zar where it would be, how big it would be. He cried.
She almost didn't survive the surgery. The G-tube is a device that allows access from the outside of her tummy into her stomach. She can be given medications and food through it and she started getting pediasure through it every day.
Immediately Charlotte shot up to 18 pounds. Her hair thickened and darkened. She had more energy and laughed much more. A few weeks later we were able to try and feed her by mouth. She had lost her ability to suck. No more bottles for her, which was okay because she wasn't allowed thin liquids. Eventually, however, she learned to love her Hawaiian Delight, a dessert baby food.
Charlotte now weighs 24 pounds. She eats normal baby foods during the day, her favorites still being Hawaiian Delight and apple cinnamon oatmeal. She gets 2 and a half cans of pediasure through her tube every night. That equals about 650 calories while she sleeps. When she gets sick and won't eat, we give her food and fluids around the clock and she gets better. Giving her her nightly arsenal of medications is a snap, whereas she used to spit most of it out. She is still very small for her age, but at our last hospital stay, a nutritionist told us she weighs 110% of her ideal weight for height. She is officially chubby. We were so proud. I squeezed Charlotte's meaty thigh and told the lady thank you.
Ella is here now. She is an excellent eater. In the hospital a specialist came in to teach me tricks and tips on breastfeeding which I had never done before. She told me how often to do it, how long on each side, when to pump and how to store frozen milk. I looked at my new little bundle of hunger and sighed.
"Can't we just put in a G-tube?"
Just kidding. Heh heh. Kinda.