We've been basking in the glow of having a brand new eater. Max is doing so well, and we couldn't be more proud - and relieved. As much as we were very optimistic going into this experience, we always kept ourselves a little guarded, afraid to get our hopes too high.
Watching Max eat, and get excited about eating, is just magical. We're less than three weeks into this experience and already Max is taking all of his calories by mouth. He eats a well rounded breakfast, lunch and dinner, as well as snacks. He likes his crunchy snacks, but he still prefers his meals in mushy, spoonable form. He will eat some finger foods at meal times, but I think he likes the speed that the spoon offers him. I'm sure as his self feeding and chewing skills improve this will change as it would with any baby learning to eat. Thankfully I can mix anything together so long as peanut butter is present and he will eat it. So he's getting all of his food groups in a bowl at each meal time and scarfing them down. He is still not interested enough in drinking to keep him hydrated so he is getting water in his tube during meals, and breast milk before nap and bedtime.
We've stopped Max's daily weigh ins, as he was already beginning to gain back what he lost from the beginning of the wean. We'll weigh him periodically to see where he's at, but we can see with our eyes how well he is eating, and obviously thriving. He is so full of energy and seems so happy. A whole new world has opened up for him and he seems to love being a part of it.
It's amazing how freeing it is to not be held captive by his tube feeding schedule anymore. We can pack a meal for him and easily feed him without the hassle of tubes, syringes, and finding somewhere to hang his feeding bag. For the first time ever we were able to leave Max during his meal time and go on a dinner date. The only feeding supplies we had to leave were a bowl and spoon. It's all a very new, and very wonderful feeling for our little family.
We've been asked a few times now when Max's tube can come out. We still don't know, is the simple answer. First Max needs to start drinking enough to keep him hydrated. Then, generally we want to see him get through an illness while maintaining his eating and drinking. Most kids don't eat and drink as much when they are sick, but for tube fed kids it can sometimes set them back a little more, and we want to know that he can still take in enough to keep him healthy enough to fight off an illness. After he does those things then it's just a matter of when everyone is ready, and confident in that decision. We're in no rush, the physical tube is no hindrance to him or to us.
Max still has a little work to do, but for now, we're calling the wean a total success. We are so proud of Max and all his hard work.
The story of one mighty little 26 weeker...
Friday, February 17, 2012
Saturday, February 11, 2012
Tube Weaning - Day 11
Today Max's oral intake rocketed to 3/4 of the calories he needs for the day. Most of it, surprisingly by spoon.
Friday, February 10, 2012
Tube Weaning - Day 10
To say that the last 10 days has been a roller coaster ride is a major understatement. The last week has definitely been the most stressful we've had since our NICU days. We've no doubt got more bumps ahead of us, but the progress Max has made in the last couple of days has been nothing short of astounding.
We've had some major up and down moments since Max began eating, as was to be expected. This is whole new territory for him and he's learning to eat much in the way that a 6 month old would do when first encountering solids. In a matter of days he's had to grow from someone who's never eaten before in his life to someone who MUST EAT to satisfy this strange, instinctual thing called hunger that he's feeling for the first time. It must have been beyond strange and confusing for him to learn the connection between hunger and eating.
I am proud to say that he has accomplished this, and more than we could have imagined. Currently he's only eating about 1/4 of the calories he needs, but considering he's only been eating for 3.5 days we think he's doing pretty great. Now that he's started eating he is being supported with tube feeds to provide him with 20% of his usual calories and 60% of his usual fluids until he begins to gain weight. He hasn't lost too much weight yet so we have some time before we need to worry about him eating more.
Currently we're riding the wave of answering any food whim Max may have. Currently his loves are graham crackers (he's had about a dozen of them today), globs of peanut butter, and chocolate. Not exactly what you might consider 'first foods', but tube fed kids rarely wean onto purees. He's also tried hummus, crackers, rice rusks, sweet potato fries, breaded veggie mock-chicken, homemade nutella, peanut butter cookies, apple, pancakes, orange, carrot, parsnip - all to varying success. He keeps coming back to his trusty graham crackers though. It's almost otherworldly to watch him take a big bite, chew, swallow, and go back for more like he's been doing this forever. The first graham cracker he ate on day 7 took him 2 hours to get through. Today I watched him blow through two of them in 15 minutes. This is the same kid that 2 weeks ago would gag and throw up on a grain of rice. We just sit and stare at him most of the day in slack-jawed wonder. More than a few tears have graced our faces.
We've got a long way to go in terms of getting enough volume, calories, variety, fluids, etc, into him - but for right now we're riding the high of having an eater. Our kid eats. With his mouth. It's just amazing.
We've had some major up and down moments since Max began eating, as was to be expected. This is whole new territory for him and he's learning to eat much in the way that a 6 month old would do when first encountering solids. In a matter of days he's had to grow from someone who's never eaten before in his life to someone who MUST EAT to satisfy this strange, instinctual thing called hunger that he's feeling for the first time. It must have been beyond strange and confusing for him to learn the connection between hunger and eating.
I am proud to say that he has accomplished this, and more than we could have imagined. Currently he's only eating about 1/4 of the calories he needs, but considering he's only been eating for 3.5 days we think he's doing pretty great. Now that he's started eating he is being supported with tube feeds to provide him with 20% of his usual calories and 60% of his usual fluids until he begins to gain weight. He hasn't lost too much weight yet so we have some time before we need to worry about him eating more.
Currently we're riding the wave of answering any food whim Max may have. Currently his loves are graham crackers (he's had about a dozen of them today), globs of peanut butter, and chocolate. Not exactly what you might consider 'first foods', but tube fed kids rarely wean onto purees. He's also tried hummus, crackers, rice rusks, sweet potato fries, breaded veggie mock-chicken, homemade nutella, peanut butter cookies, apple, pancakes, orange, carrot, parsnip - all to varying success. He keeps coming back to his trusty graham crackers though. It's almost otherworldly to watch him take a big bite, chew, swallow, and go back for more like he's been doing this forever. The first graham cracker he ate on day 7 took him 2 hours to get through. Today I watched him blow through two of them in 15 minutes. This is the same kid that 2 weeks ago would gag and throw up on a grain of rice. We just sit and stare at him most of the day in slack-jawed wonder. More than a few tears have graced our faces.
We've got a long way to go in terms of getting enough volume, calories, variety, fluids, etc, into him - but for right now we're riding the high of having an eater. Our kid eats. With his mouth. It's just amazing.
Tuesday, February 7, 2012
Tube Weaning - Day 7
Our day did not begin with high morale. Max awoke whining and fussy and already too tired to start his day. He cuddled in bed with dad while I prepared breakfast. During breakfast he just sat there, and stared at us with his big, sad eyes. We tried our best to enjoy our breakfasts and put on a smile for Max.
Max had no interest in playing at all. He only wanted to be held and cuddled and would cry to be picked up as soon as you put him on the floor. A far cry from his usual self. He ended up taking four naps throughout the day instead of his usual one. He was just miserable. Lunch saw him have a total breakdown. He cried for the sandwich on my plate, and then cried even harder once he got it and didn't know what to do with it. It was a pitiful sight. He was in slightly better spirits after his long nap, but still didn't have the energy to play.
We decided a change of scenery would do us all a world of good, so we broke our usual winter-isolation and headed to the mall while it was still quiet for the afternoon. We brought a couple of graham crackers along with us just in case Max changed his mind about eating. He didn't seem interested in eating, but he did clutch one of the crackers tight in his fist on the ride home, even as he drifted off to sleep. Once we were home, he offered me a nibble, and then had a nibble of his own. And then he had another. I slung him up on my back in the carrier while I made dinner, and I could hear little nibbling, and chewing, and swallowing behind me. He nibbled his cracker through dinner time, mostly ignoring the asparagus and baked mac and cheeze that we had for dinner. He spent a solid 2 hours nibbling that graham cracker, crumb by crumb, until it was gone. Then for the next hour he nibbled through some popcorn twists. Then he spent the next 30 minutes gnawing on half a stick of a Kit Kat dark bar. After nibbling through a solid 3.5 hours (an hour past his usual bath and bed time) he started rubbing his eyes with chocolatey fists. After a quick bath and a story he was fast to sleep.
Watching Max eat, it felt like a dam burst open for him. It wasn't so much the amount he ate, or the skill with which he ate, but the undivided attention he gave to his task and the determination on his face. It's like his fear and apprehension melted away and his willingness to put anything to his mouth was rather refreshing after the start we had to his day.
Nearly 48 hours after he received his last tube meal, the first calories made their way to his tummy by his own hand. I hope those crumbs have merely whetted his appetite, and we will see more enthusiastic eating tomorrow.
Max had no interest in playing at all. He only wanted to be held and cuddled and would cry to be picked up as soon as you put him on the floor. A far cry from his usual self. He ended up taking four naps throughout the day instead of his usual one. He was just miserable. Lunch saw him have a total breakdown. He cried for the sandwich on my plate, and then cried even harder once he got it and didn't know what to do with it. It was a pitiful sight. He was in slightly better spirits after his long nap, but still didn't have the energy to play.
We decided a change of scenery would do us all a world of good, so we broke our usual winter-isolation and headed to the mall while it was still quiet for the afternoon. We brought a couple of graham crackers along with us just in case Max changed his mind about eating. He didn't seem interested in eating, but he did clutch one of the crackers tight in his fist on the ride home, even as he drifted off to sleep. Once we were home, he offered me a nibble, and then had a nibble of his own. And then he had another. I slung him up on my back in the carrier while I made dinner, and I could hear little nibbling, and chewing, and swallowing behind me. He nibbled his cracker through dinner time, mostly ignoring the asparagus and baked mac and cheeze that we had for dinner. He spent a solid 2 hours nibbling that graham cracker, crumb by crumb, until it was gone. Then for the next hour he nibbled through some popcorn twists. Then he spent the next 30 minutes gnawing on half a stick of a Kit Kat dark bar. After nibbling through a solid 3.5 hours (an hour past his usual bath and bed time) he started rubbing his eyes with chocolatey fists. After a quick bath and a story he was fast to sleep.
 |
| Tired and chocolatey |
Watching Max eat, it felt like a dam burst open for him. It wasn't so much the amount he ate, or the skill with which he ate, but the undivided attention he gave to his task and the determination on his face. It's like his fear and apprehension melted away and his willingness to put anything to his mouth was rather refreshing after the start we had to his day.
Nearly 48 hours after he received his last tube meal, the first calories made their way to his tummy by his own hand. I hope those crumbs have merely whetted his appetite, and we will see more enthusiastic eating tomorrow.
Monday, February 6, 2012
Tube Weaning - Day 6
It was a long, long day around here.
Today Max wasn't fed through his tube at all. He was given some electrolyte fluids to help keep him hydrated, but that's all. For someone that didn't get any food, he was in pretty good spirits for most of the day. There isn't yet a lot of eating happening, but we're doing our best to remain optimistic - Max is sorting through a lot of feelings.
He was very enthusiastic about feeding each of us, getting very worked up if we only pretended to eat. It's almost as though he's testing the waters with us, playing out what he'd like to be doing. He did nibble on some blueberries, a graham cracker and take several gulps of water throughout the day. By the time dinner rolled around he was totally checked out and wanted nothing to do with the tortillas, refried beans and guacamole on his tray.
We're all ready for a good night sleep. Tomorrow we soldier on, hoping for bigger nibbles on the horizon.
Today Max wasn't fed through his tube at all. He was given some electrolyte fluids to help keep him hydrated, but that's all. For someone that didn't get any food, he was in pretty good spirits for most of the day. There isn't yet a lot of eating happening, but we're doing our best to remain optimistic - Max is sorting through a lot of feelings.
He was very enthusiastic about feeding each of us, getting very worked up if we only pretended to eat. It's almost as though he's testing the waters with us, playing out what he'd like to be doing. He did nibble on some blueberries, a graham cracker and take several gulps of water throughout the day. By the time dinner rolled around he was totally checked out and wanted nothing to do with the tortillas, refried beans and guacamole on his tray.
We're all ready for a good night sleep. Tomorrow we soldier on, hoping for bigger nibbles on the horizon.
Sunday, February 5, 2012
Tube Weaning - Day 5
It feels a little ironic that we are kicking off Feeding Tube Awareness week by saying goodbye to Max's tube meals. We're taking a pretty intensive approach to helping Max become an eater, and while we are being followed by our local feeding clinic, we are largely taking on the task on our own. This is in part due to the lack of supports in place for people who are tube fed.
Tube feeding is largely associated with end-of-life of care, and so many people don't realize how many children (and adults) rely on feeding tubes to live and thrive. There are myriad reasons why people need feeding tubes, from motility disorders, Eosinophilic Disorders, Mitochondrial disease, swallowing disorders, to name just a few. Feeding tubes are life saving. For some they are a temporary solution, for others they are a permanent need. Feeding tubes are a way of life for many families, and raising awareness is a small step to understanding and acceptance.
Max has been fed through a tube for his whole life - first through an OG (orogastric), then an NG (nasogastric), and now a G (gastric). During Max's first 6 months he underwent a great deal of medical trauma, much of it oriented around his face and mouth. He was intubated for months, undergoing several reintubations during that time. Even once he no longer had a breathing tube in his mouth and down his throat, he had a feeding tube regularly inserted into his nose and down his throat. This trauma left him with a severe oral aversion. He didn't like having his mouth touched, and anything even touching his tongue would make him gag and throw up. His g-tube allowed him to be nourished at home while he recovered from the trauma and learned to trust things near his mouth again. Unfortunately during that time he became dependent on his feeding tube, a common, but rarely discussed side effect of tube feeding.
Max doesn't eat because he has never felt hunger and does not know what eating is. That instinct is lying dormant somewhere within him. Eating comes with a certain amount of fear and apprehension for Max. He doesn't know how to suck from a bottle or straw, because he never learned as a baby. He has trouble chewing and swallowing food without gagging, because they are skills he has not had the opportunity to develop. Food does not yet interest him in the way it does other children. He can not be coaxed with a cookie, or a french fry, or some other special treat. Hunger needs to be his motivator, and for that to happen we have to stop feeding him. It's completely antithetical to everything we've been doing up until this point.
Tomorrow we'll wake up and go about our day, surrounding ourselves in food, but we won't feed our child. Max will grow hungry, and likely confused, and irritable, and he will face an internal struggle over his own identity. Max is not someone who eats. We're asking him to become a whole new person. He'll struggle, and fall, and hopefully get back up and nibble his way into a new him.
We are so grateful for the life that Max's feeding tube has allowed him. Hopefully, we are just beginning a whole new tube-free chapter.
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