Here begins the journey to beat the evil Naso-Gastric tube! How fitting that is is Ranger's (Ramsey's Dad) birthday today- lots to celebrate! It really started for me last Tuesday. Gracie's feeding tube came out again....ugh!!!!!!! It's a rotten occurrence sure to spoil both of our moods for the day, or night. That darn tape comes loose from wear and tear (ie drooling) and one little rub of her nose and the tube slips right out. Darn!
So I get out the supplies and try desperately to give her a bottle first. "Just drink this and I won't have to put that tube down your nose! Please, please, please..." But in the end the tube won and we both got REALLY upset. It's not like when she was a newborn and didn't know what was going on- she gets it now. And it is so hard to do that to her. Ramsey walked in the door from work and we were both in tears. The next day, I was totally down in the dumps. How were we ever going to get rid of this "temporary" feeding tube? Who can I talk to who will understand what we are going through? I found my answer on...where else? The internet! Thank you Google! I searched all around for other parents who might share our plight. And boy did I find them! Nothing pulls you out of a funk like a little understanding, education and encouragement from other people's stories.
There are SO many people out there who are going through feeding issues with their children- wow! And for all different reasons. Gracie's feeding issues are due to some symptoms of Pierre-Robin Sequence and a floppy airway, which is serious business, but boy there could be worse things. Gratitude check!
The most common issue I began to read about was tube-dependancy. This condition arrises when tube fed children are physically capable of oral feeding, but are not motivated to do so because they are never hungry. Makes sense. "Okay," I thought, "I am not sure whether Gracie is not capable or just not motivated to eat." She had a weak suck and used to bunch her tongue at the back of her throat. But ever since she turned 6 months old, things had started to change for the better. She could suck out the milk, but her swallow was slow and she was unsure. The milk usually ended up spilling out of her mouth. We use a Haberman Special Needs Feeder, but she still struggled.
Then I started to read about children being left on feeding tubes to satisfy the doctors desire for them to gain weight and stay "on the curve". Words like "liability" started to pop up. Apparently many doctors are hesitant to wean babies. They are very attached to charts and ml counts etc. Then I started to read about all of the nasty tube side-effects; oral aversion, numbness in the throat, nose ulcers, vomiting, reflux.... and I just got so mad! And like a light-switch being turned on, I knew that I had to take charge. Gracie had been taking about 20 cc's of her bottle and a few bites of baby food, but she was never hungry. Why on earth would she want to eat? All of the parents online (http://tubefedkids.ning.com) were talking about this new out-patient therapy done via web coaching through the Graz Children's Hospital in Austria. It's pretty amazing- you should check out their website at www.notube.at. Reading about this program, in particular, is what helped me to see that Gracie may be more prepared than I thought to lose the tube. I decided to email our medical team (speech therapists, occupational therapists, GI doc and Pediatrician). No one had ever heard of this program, which is amazing to me. Our OT was trepdatious, but supportive. Actually, I think she thought I was nuts! But I pushed for a plan to move forward, so here we go!
So I get out the supplies and try desperately to give her a bottle first. "Just drink this and I won't have to put that tube down your nose! Please, please, please..." But in the end the tube won and we both got REALLY upset. It's not like when she was a newborn and didn't know what was going on- she gets it now. And it is so hard to do that to her. Ramsey walked in the door from work and we were both in tears. The next day, I was totally down in the dumps. How were we ever going to get rid of this "temporary" feeding tube? Who can I talk to who will understand what we are going through? I found my answer on...where else? The internet! Thank you Google! I searched all around for other parents who might share our plight. And boy did I find them! Nothing pulls you out of a funk like a little understanding, education and encouragement from other people's stories.
There are SO many people out there who are going through feeding issues with their children- wow! And for all different reasons. Gracie's feeding issues are due to some symptoms of Pierre-Robin Sequence and a floppy airway, which is serious business, but boy there could be worse things. Gratitude check!
The most common issue I began to read about was tube-dependancy. This condition arrises when tube fed children are physically capable of oral feeding, but are not motivated to do so because they are never hungry. Makes sense. "Okay," I thought, "I am not sure whether Gracie is not capable or just not motivated to eat." She had a weak suck and used to bunch her tongue at the back of her throat. But ever since she turned 6 months old, things had started to change for the better. She could suck out the milk, but her swallow was slow and she was unsure. The milk usually ended up spilling out of her mouth. We use a Haberman Special Needs Feeder, but she still struggled.
Then I started to read about children being left on feeding tubes to satisfy the doctors desire for them to gain weight and stay "on the curve". Words like "liability" started to pop up. Apparently many doctors are hesitant to wean babies. They are very attached to charts and ml counts etc. Then I started to read about all of the nasty tube side-effects; oral aversion, numbness in the throat, nose ulcers, vomiting, reflux.... and I just got so mad! And like a light-switch being turned on, I knew that I had to take charge. Gracie had been taking about 20 cc's of her bottle and a few bites of baby food, but she was never hungry. Why on earth would she want to eat? All of the parents online (http://tubefedkids.ning.com) were talking about this new out-patient therapy done via web coaching through the Graz Children's Hospital in Austria. It's pretty amazing- you should check out their website at www.notube.at. Reading about this program, in particular, is what helped me to see that Gracie may be more prepared than I thought to lose the tube. I decided to email our medical team (speech therapists, occupational therapists, GI doc and Pediatrician). No one had ever heard of this program, which is amazing to me. Our OT was trepdatious, but supportive. Actually, I think she thought I was nuts! But I pushed for a plan to move forward, so here we go!