Made of Gray

The Feeding Goes On and On

Holly D Gray6 Comments
These past few days have been busy. After much contemplation, consulting with anyone that will listen and setting up our own schedule I decided we were trying to do too much. It takes Caleigh about 45 minutes to eat a meal and I was trying to feed her every 3 hours. Add that 45 minutes in there and I was attempting a feed every 2 hours! No wonder she wasn't cooperating. So I talked to a few friends with normal developing children and asked what their schedule was. I talked with a few short gut parents and decided that every child is different and every meal isn't always a success. Sometimes kids don't want to eat. So here is the schedule I came up with and not on my own might I add....
  • 7 am wake up and feed oatmeal 2tbs with 40ml of formula added + cinnamon, Give meds by g-button, drink 30-40ml of formula either by bottle or nosey cup
give juice and water between feeds
  • 12pm 2 tbs meat with veggies & 2 tbs fruit, drink 10-20ml of formula by bottle or cup
juice and water between
  • 4:30ish finish meat with veggis & fruit
juice and water between
  • 7pm 125ml formula by bottle, what she doesn't finish in 30 minutes is given by g-button, give meds by g-button
  • 10-11pm Formula by g-button to replace calories not achieved during day time feeds

  • hot cocoa for mommy
Another development was the cup drinking. The cup is called a Nosey. The very first time we used it she drank in 10 minutes what took her 30 minutes with a bottle. We were impressed. So our speech therapist talked with collegues and did some research. Her thought is that Caleigh is passed the point of 'needing' a bottle. Meaning she doesn't need that comfort of sucking like a newborn does. Right now her comfort is with chewing due to teething. So we are going to start using a honeybear bottle and try to teach drinking from a straw.

Well, last night I was needing to get a few more calories in Caleigh before bed. I decided to add some rice cereal to her already thick formula (it has the smell, look and consistency of Eagle Brand milk). Awhile back I had accidently bought a pack of fast flow nipples. Eric and I laughed about how big they were and how huge the hole seemed. It came to mind and I decided to use them since I was thicking her already thick formula. Why not? What's there to lose? And wouldn't you know Caleigh started sucking and swallowing like a champ. She didn't drink as much as I wanted but the motions were great. I put her to bed and tube fed the rest. This morning I woke up fed her oatmeal and then tried the bottle once more. She did amazing, taking exactly what I wanted her too. I'm going to try again at lunch, but we may have found the right nipple for Caleigh. Finally. I still think it is important developmentally to learn to drink from a bottle. We will have to revisit this subject with our therapist on Monday.

I had questions about fluid input and calorie input. Caleigh is supposed to have 500 calories per day minimium and as far as fluid goes at least 800ml per day. It's harder to get the fluid in now that she is eating so much baby food. But I add water to the food, or juice for calories and formula to her oatmeal. Also we flush her meds with water. Giving her liquid between feeds is going well and she hasn't shown any signs of dehydration. Be sure to ask your GI doctor about your numbers. There is a formula to calculate this.

We go for a follow-up appointment with the Cranial Band people on Tuesday. The hat still isn't fitting well. We have a wonderful person to work with who is sticking up for our case. Apparently there was talk of 'not treating Caleigh' because it wasn't working. At this point in the process I am determined to make it work, so 'not treating' will not be happening if I have anything to do with it. As far as her head shape goes it is getting better. We have hopes of her getting enough growth that it will start to fit better. I can tell a difference and that is the only thing keeping me going.

I took Caleigh to the pediatrician this week because I thought she might have an ear infection. She was favoring her left ear and would flinch when she moved a certain way. After a quick look at the ears everything was perfect. The real culprit is teething. Apparently there is a nerve that runs from the ear down the jaw line to the gums. Kids sometimes think their ear hurts when it's actually their teeth. I also took Caleigh for our weekly chiropractor appointment. She had a little kink in her neck as well. So after the Chiro she hasn't been flinching anymore.

On to a happy note. I had a brillant idea the other day. Swimming! Caleigh can go swimming now that her central line is gone. I'm really excited about the therapy possiblities related to swimming. I haven't been swimming in two years since Eric and I went on vacation while I was pregnant. We may have to take Caleigh on a little trip to the ocean this summer! I'm so excited!

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