Welcome

This site is not just for those who have children with Cerebral Palsy but those who have, know, or who are disabled people. This sites intention is to help those who dont know, and for those who do to help others. I want this page to be a ongoing learning experience where we can share our experience and help eachother. As a special mom its hard not knowing and not having people to relate to. I hope this will provide comfort somewhere to as many people as possible. Please share and comment as much as you would like!

Sunday, October 24, 2010

Feeding issues

Kale was born at 29weeks so he didn't have his "suck swallow" reflex yet like most babies his age. Typically little babes don't get there suck swallow reflex until about 32 weeks gestation. So about 4 weeks after he was born at 33 weeks gestation we started to breastfeed, he took to it right away taking in about 17mls his first feed!! How do I know he took 17mls his first feed you ask?!?! Well in the NICU you weigh EVERYTHING, from how much his poop weighs to how much his pee weighs ..You weigh everything going in and out, to ensure everything is working properly. So before breastfeeding you get your babe naked and plop them on the scale. We weigh the babes in grams , them we start feeding, then weigh them again. For every gram they gain that is 1 ml they drank!!  When Kale was just born he ate about 1ml every 4 hrs, then about 2 weeks later we were up to 18mls every 4 hrs. By the time we left the NICU Kale was drinking about 70mls which is a little over 2oz every 3 to 4 hrs.. At this point, given his feeding history we thought that feeding wouldn't be an issue for Kale.

Kale was a miserable baby to say the least. He had horrible acid reflux like most preemies. So I breastfed him for another 4 months after coming home, and had to give up because he wouldn't lay horizontally. You try to breastfeed a baby vertically!! Not happening, so we fed him breast milk by bottle after that. He took well to the bottle. We've been giving him the bottle since he was tiny in the hospital because milk comes out quicker in a bottle and the babies don't have to work so hard, so its a quick way to get there feed in. And you cannot leave the hospital until the babies are getting full feed with no issues, among other things. Kale seemed feeding wise to be trekking along good.

Kale is now 16months old and still on the bottle. He has a thickener we put in his milk so he doesn't aspirate. Kale used to cough and sputter when drinking, he almost seemed really disorganized. Kale had milk dripping out the sides of his mouth indicating a poor latch, and feeds would take a while. I started to worry about him breathing in the milk when feeding because his eyes also seemed to water sometimes when feeding and his coughing got more consistent. So we scheduled an appointment with our pediatrician and discussed the matter. Our pediatrician scheduled a barium swallow test. A barium swallow test is when your child is fed a mixture called barium that shows up on an x-ray so that you can follow the liquids path to see if it is going in the lungs. My hospital only had the technology for still framed pictures to be taken. The information we found from this test was helpful, and resulted in us getting a referral to the BC Children's hospital in Vancouver to have a video floroscopy done, which is like the test we just had with the barium, but its live and we can watch it like a recording not still framed pictures. Our test had confirmed Kale had been aspirating about 20% of the milk into his lungs, and most children would cough allot of it up but Kale isn't like most kids and didn't have the reflex to notice he was aspirating as much as he was.

So the feeding team which assessed Kale from Sunny Hill recommended that Kale be put on a thickener, as well as an antacid stronger than just the renetidine he was on, he was prescribed omeprezole.  The thickener is kind of like a starch to make gravy, kale needed his milk to be thickened to the consistency of a melted milkshake for safe swallowing!

Kale has been doing amazing with this, feeding got easier, we still try to feed him solids. Kale also had a real bad oral adversion. So much so that he didn't even like toys or his hands put near his mouth. So putting a spoon there with food on it was impossible. Kale now will allow toys, hands, and spoon with food near his mouth. He still isn't a fan of the food on the spoon, but at least he doesn't gag and projectile vomit everywhere.

If Kale continues to refuse to eat he will out grow using the bottle and the possibility of a Gastric Tube will be our next option. A gastric tube is a tube placed on your abdomen attached to your stomach so that you can bypass swallowing and just be fed. The little plug looks like a beach ball spout. We will continue trying to feed him regardless of if he had a tube or not. And having a gastric tube isn't the end of the world just another reminder of Kale's severity. But if Kale is sooo miserable feeding orally and I'm miserable feeding him orally, then feeding him by tube would be a opportunity to enjoy each others company more. You would know what I meant if you seen me feed Kale, I basically look like I'm raping my child's mouth with a bottle while hes screaming and dodging the bottle and smacking it away. Its horrible!


So very long story short, ensure your child isn't aspirating, look up signs and symptoms. Gastric tubes can be looked at as another thing your kid wont be able to do, or a opportunity to provide a safer more enjoyable was of feeding while providing you wit more "happy" time with your babe!