It has been almost a year since I posted on Gabriel's blog. He is an active toddler, which means Mommy and Daddy have almost no time to be adults anymore. Thomas (under the name Eric) has been working very hard on his preemie advocacy platform, and his book that he wrote about our NICU experience is in its final stages before he starts submitting it to publishers. In the meantime, we have been interviewed by the Seattle Times and have had a meeting with Swedish Hospital's ethics committee, both regarding the edge of life decisions that we had to make in 2012.
To read the Seattle Times's full article, click here: New evidence complicates decisions on when to save extremely premature babies
To follow Gabriel, the book, and our preemie advocacy efforts, consider subscribing to Thomas's Wordpress blog: They don't cry
He is also on Twitter as @MicroPreemieDad
On Facebook as Eric Ruthford - author page
and on YouTube as eruthford
Thomas is also a blogger on the popular preemie website Preemie Babies 101
With our other platforms, we won't update this blog much anymore, but we hope you will continue to follow Gabriel through Facebook, Wordpress, and YouTube!
And just for fun, here is the short cell phone video of Gabriel putting his favorite Trader Joe's greek yogurt into the little kid cart. He knows exactly where in the store they keep this, and it is conveniently at todder level
Saturday, October 31, 2015
Tuesday, June 23, 2015
Feeding therapist vs. dietician vs. parents vs. toddler. A rant
Wow, it's been six months since we posted any thing here. I (Dad) did, however, write a post on my blog, "They Don't Cry," about feeding / nutrition issues, and the contradictory advice we get from the different therapists.
Wednesday, December 31, 2014
Moo, Baa, La La....Cookie!
The year is wrapping up, and I realize that a lot has happened in the past six months. In late summer, we moved back to Maple Valley to live with Gabriel's grandparents, and developed new daily routines as I became the full time employee and Thomas became the stay at home dad. We also had to switch therapists since we moved outside the service area of our therapy center. That was really hard; his ladies have seen him go from a 6 mo./2 mo. baby to walking, eating, signing and babbling. Now we have to somehow trust new people that haven't seen him grow, learn and change to be able to carry on where his previous therapists left off.
In terms of language development, we've seen a huge shift. Gabriel went from babbling and using only the "more" sign to using "please", "all done", "sit", "open" and "help" with the correct intent. "All done" was a big one. We finally had a cue where he could tell us he was full at mealtimes, instead of just waiting and watching for the barfy-face. And then, one day, I was reading an animal sounds book to him and I paused at "a horse says...." and he filled in "NEIGH!" very enthusiastically. It surprised us all, but he had memorized the book and actually would associate the correct sound with the correct animal, even if read out of order. Here's a video of him reading the book, "Moo, Baa, La La La", with me
We've moved on to play with his stuffed barnyard animals. He still mostly throws them around, but sometimes you can catch him doing things like this:
Now, he's using more words than signs, and he loves to identify colors for you. Here's one more, just to show you how far he's come. He's play talking on the phone and then reading himself a book:
Even as language is developing, feeding still remains a challenge. We've hit a texture plateau, meaning he eats solids, but only in puree form. We've tried introducing third stage foods, and he can deal with a few bites, but he can't have a whole meal with that much texture. He has his "safe" textures that he knows he can handle, but anything outside the box is really hard to deal with. This applies to liquids as well. We are still working on cup drinking, and the thing that works the best right now is a Honey Bear drinker. Through the straw, it allows us to get a small portion of milk/yogurt mix into his mouth while we encourage him to close his mouth around the straw. He doesn't have to suck, just squeeze to make it work. We use a milk/yogurt mix so that the liquid isn't as runny and he can handle it a little better (plus yogurt is a favorite food and he will ask for it by name). With this, we can get him to self-drink about an ounce or two per day, so the tube is still our primary fluid conduit.
On the other end of the spectrum, chewing also seems to be a foreign concept. I finally got him to reliably lick foods if I tell him to touch it to his tongue, but if he actually bites down and gets a small piece of something in his mouth, he can't handle it and gags until the piece of food comes out. He hasn't figured out how to manipulate foods in his mouth, and by extension he hasn't figured out how to spit things out, so the only way he can get unwanted things out of his mouth is to gag and vomit. We have a long way to go. Thomas has started showing Gabriel some Cookie Monster videos, hoping to have him learn by observation. So far, we have only succeeded in addicting our child to Cookie Monster and he will ask for "cookie" several times a day (he only gets to watch it once, though).
One other complication we discovered is that Gabriel has a partial vocal cord paralysis on the right side. We finally made an ENT appointment and they stuck a scope down is throat through his nose (he was NOT amused). What this means is that liquids can sneak past the vocal cord barrier and that may make it harder for him to learn to drink. There are several treatment options available; right now we're just taking the "wait and see if therapy can help him compensate" approach, but we may have to take surgical steps to either "plump up" the paralyzed vocal cord or move it over surgically so that the gap can be closed by the functioning vocal cord. If you want more detail, have a look at this webpage, it gives a really good overview of what the ENT told us.
Physically, Gabriel is doing very well. He's progressed to jumping, stair-climbing and generally climbing all over Mommy and Daddy. His favorite game is to stand on your lap and then just fold his legs and drop, eliciting an OOF! from the parent in question. This is apparently hilarious. Now that we have a child who loves to run, we also take him hiking. Here's a few pictures of our outings.
On the boardwalk, he's pretending the leaf stem is a straw and putting it in the indentation just under his lower lip (this is how he thinks straws work).
At Christmas, his Grandma got him a "beep beep". We had requested it since he needs to learn to use his feet to push himself forward and backward. That night, at bedtime, instead of crying for Daddy, he was crying for the "beep beep". I think it is a winner.
It's 11:45pm on New Year's Eve. This year is almost over, and the fireworks are starting to pick up outside. Luckily, Gabriel is already in bed asleep. We have a lot to work on in the next year. Thomas is working on publishing a book about preemies and NICUs, using our story as a uniting thread. We are watching our preemie grow up, and are thankful for the chance to do so. I think I need to update his blog banner, he's such a big boy now!
In terms of language development, we've seen a huge shift. Gabriel went from babbling and using only the "more" sign to using "please", "all done", "sit", "open" and "help" with the correct intent. "All done" was a big one. We finally had a cue where he could tell us he was full at mealtimes, instead of just waiting and watching for the barfy-face. And then, one day, I was reading an animal sounds book to him and I paused at "a horse says...." and he filled in "NEIGH!" very enthusiastically. It surprised us all, but he had memorized the book and actually would associate the correct sound with the correct animal, even if read out of order. Here's a video of him reading the book, "Moo, Baa, La La La", with me
We've moved on to play with his stuffed barnyard animals. He still mostly throws them around, but sometimes you can catch him doing things like this:
Now, he's using more words than signs, and he loves to identify colors for you. Here's one more, just to show you how far he's come. He's play talking on the phone and then reading himself a book:
Even as language is developing, feeding still remains a challenge. We've hit a texture plateau, meaning he eats solids, but only in puree form. We've tried introducing third stage foods, and he can deal with a few bites, but he can't have a whole meal with that much texture. He has his "safe" textures that he knows he can handle, but anything outside the box is really hard to deal with. This applies to liquids as well. We are still working on cup drinking, and the thing that works the best right now is a Honey Bear drinker. Through the straw, it allows us to get a small portion of milk/yogurt mix into his mouth while we encourage him to close his mouth around the straw. He doesn't have to suck, just squeeze to make it work. We use a milk/yogurt mix so that the liquid isn't as runny and he can handle it a little better (plus yogurt is a favorite food and he will ask for it by name). With this, we can get him to self-drink about an ounce or two per day, so the tube is still our primary fluid conduit.
On the other end of the spectrum, chewing also seems to be a foreign concept. I finally got him to reliably lick foods if I tell him to touch it to his tongue, but if he actually bites down and gets a small piece of something in his mouth, he can't handle it and gags until the piece of food comes out. He hasn't figured out how to manipulate foods in his mouth, and by extension he hasn't figured out how to spit things out, so the only way he can get unwanted things out of his mouth is to gag and vomit. We have a long way to go. Thomas has started showing Gabriel some Cookie Monster videos, hoping to have him learn by observation. So far, we have only succeeded in addicting our child to Cookie Monster and he will ask for "cookie" several times a day (he only gets to watch it once, though).
One other complication we discovered is that Gabriel has a partial vocal cord paralysis on the right side. We finally made an ENT appointment and they stuck a scope down is throat through his nose (he was NOT amused). What this means is that liquids can sneak past the vocal cord barrier and that may make it harder for him to learn to drink. There are several treatment options available; right now we're just taking the "wait and see if therapy can help him compensate" approach, but we may have to take surgical steps to either "plump up" the paralyzed vocal cord or move it over surgically so that the gap can be closed by the functioning vocal cord. If you want more detail, have a look at this webpage, it gives a really good overview of what the ENT told us.
Physically, Gabriel is doing very well. He's progressed to jumping, stair-climbing and generally climbing all over Mommy and Daddy. His favorite game is to stand on your lap and then just fold his legs and drop, eliciting an OOF! from the parent in question. This is apparently hilarious. Now that we have a child who loves to run, we also take him hiking. Here's a few pictures of our outings.
On the boardwalk, he's pretending the leaf stem is a straw and putting it in the indentation just under his lower lip (this is how he thinks straws work).
At Christmas, his Grandma got him a "beep beep". We had requested it since he needs to learn to use his feet to push himself forward and backward. That night, at bedtime, instead of crying for Daddy, he was crying for the "beep beep". I think it is a winner.
It's 11:45pm on New Year's Eve. This year is almost over, and the fireworks are starting to pick up outside. Luckily, Gabriel is already in bed asleep. We have a lot to work on in the next year. Thomas is working on publishing a book about preemies and NICUs, using our story as a uniting thread. We are watching our preemie grow up, and are thankful for the chance to do so. I think I need to update his blog banner, he's such a big boy now!
Friday, June 6, 2014
Punctuated Equilibrium
Okay, I realize that it's been three months since I've updated Gabriel's blog, and he's come a long way since the last time we talked. Most importantly, our little man is now TWO! Here he is at his birthday party:
He's gone from just learning to walk to running, climbing up on things, going up sets of stairs and he's just now getting the bend-your-leg-to-go-down part, too. Mealtimes have also improved. Gabriel will "help" by feeding himself yogurt or Gerber 2nd stage baby food. It's pretty messy, but his interest in holding the spoon and using it for its intended purpose instead of as a projectile is exciting. He will accept some water from a cup in his mouth, but only for a couple of sips, so we're still tubing in all his fluids. I'd like to say I could write a post every week with some small step he has taken to improve, but Gabriel doesn't really work that way.
In biology, there's a term in evolutionary theory called "punctuated equilibrium" meaning that things would stay the same for awhile and then a rapid burst of evolutionary changes would occur, and then things would say the same again until another burst of changes emerged. This seems to be how Gabriel develops. Two weeks ago his therapist had given me several things to work on with him, and these are actually things we've been working on for awhile. Between then and now, he had a cognitive shift and started doing some real turn-based play, pointing at objects, recognizing what you want when you point and something and ask him to go get it, understanding how to put together his shape/peg toy (no more trial and error), and even though he's still not talking in words, making it very clear he understands what you're saying and can make himself understood as well. He has definite conversations with his toys in baby babble, and has started babbling to us a lot, too.
His attention span has also improved, he will play with the peg/shape toy for awhile, or bring you books and actually be engaged in the book instead of just flipping pages. Given that his go-to activity has been spinning rings or bowls on the floor, it's nice to see him doing something else. Although, that means I need to upgrade some of his toys. Mostly, we're learning that Gabriel needs a lot of repetition and then he all of a sudden "gets it", just like what happened with spoon feeding back in December. So, we have to do our part and just keep showing him how to do things and talking to him and eventually he might start talking back. Until then, he's going to run run run run run run run ......and.....fall down..... and then run run run run again.
He's gone from just learning to walk to running, climbing up on things, going up sets of stairs and he's just now getting the bend-your-leg-to-go-down part, too. Mealtimes have also improved. Gabriel will "help" by feeding himself yogurt or Gerber 2nd stage baby food. It's pretty messy, but his interest in holding the spoon and using it for its intended purpose instead of as a projectile is exciting. He will accept some water from a cup in his mouth, but only for a couple of sips, so we're still tubing in all his fluids. I'd like to say I could write a post every week with some small step he has taken to improve, but Gabriel doesn't really work that way.
In biology, there's a term in evolutionary theory called "punctuated equilibrium" meaning that things would stay the same for awhile and then a rapid burst of evolutionary changes would occur, and then things would say the same again until another burst of changes emerged. This seems to be how Gabriel develops. Two weeks ago his therapist had given me several things to work on with him, and these are actually things we've been working on for awhile. Between then and now, he had a cognitive shift and started doing some real turn-based play, pointing at objects, recognizing what you want when you point and something and ask him to go get it, understanding how to put together his shape/peg toy (no more trial and error), and even though he's still not talking in words, making it very clear he understands what you're saying and can make himself understood as well. He has definite conversations with his toys in baby babble, and has started babbling to us a lot, too.
His attention span has also improved, he will play with the peg/shape toy for awhile, or bring you books and actually be engaged in the book instead of just flipping pages. Given that his go-to activity has been spinning rings or bowls on the floor, it's nice to see him doing something else. Although, that means I need to upgrade some of his toys. Mostly, we're learning that Gabriel needs a lot of repetition and then he all of a sudden "gets it", just like what happened with spoon feeding back in December. So, we have to do our part and just keep showing him how to do things and talking to him and eventually he might start talking back. Until then, he's going to run run run run run run run ......and.....fall down..... and then run run run run again.
Monday, March 17, 2014
Being a "good parent"
I'm reading a book called Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges, and the section I just read on cultural and environmental aspects of eating was really eye-opening. Our culture puts the emphasis on us, as parents, "getting" our child to eat, and if we don't, we are "bad" parents. While many of the mainstream strategies for picky eaters are to impose penalties for not eating, force a child to eat the "yucky" foods, or offer desserts only as rewards, this doesn't work for children with eating delays or children that are "resistant eaters". Resistant eaters are a level beyond mere picky.
As parents, we are so focused on getting our child to eat, that it becomes about the food on the plate and the amount taken during the day, and ceases to be about giving the child a good eating experience. If food becomes a battle every time, and food creates negative emotions (i.e. from force feeding), it can also trigger the fight-or-flight response. Besides revving up your heart rate and breathing and making it less likely that you want to sit still and eat, it suppresses your appetite, so you're not even hungry! Talk about having the opposite effect from the intended.
Another general belief is that if you don't get your child to eat a certain amount each day (for us, as prescribed by the dieticians), you are failures as parents. No one comes right out and says it, but you feel it. Until I found a dietician I could work well with, I hated our GI appointments, because I always felt like there was this underlying judgment going on -- that it was my fault that Gabriel couldn't hold down the required calories. One of the hardest things we are trying to learn to do right now is to let Gabriel say when he's full. We want to respect his decision, even when it means he's only taken half of his "required" meal, but it's SO HARD. When is it behavioral, and when is he really full? I don't know if it is any easier for "normal" parents, because they don't have a doctor prescribed calorie goal. Gabriel's feeding has been regimented for so long, I don't know how we'll ever get comfortable with the ad-lib stage. This "clean your plate" mentality and the expectation that it is completely the parent's fault if it doesn't happen is hard to overcome. If we want to set up a hunger cycle and teach Gabriel about "full" and "hungry", we have to let him have a say.
Other cultural/environmental expectations that I find myself subject to are "don't play with your food", "don't talk with your mouth full/don't chew with your mouth open", and the belief that certain foods are for certain times of day. We are expected to teach our children table manners pretty much as soon as they start eating. However, the gateway to accepting food by mouth is the fingers. Touching, feeling, and playing with food makes a child more comfortable with that food, and by extension, they are comfortable putting it in their mouth. So we are ENCOURAGED to give Gabriel food to play with; it's a success if he will touch something new. We've seen this in action. When he first started, he would not even touch food, let alone put it in his mouth. It wasn't until he was comfortable touching purees and playing with a spoon that we were able to put the food on the spoon and into his mouth. Chewing and talking with a full mouth is also encouraged on our part, to show Gabriel the mechanics of eating, that we're comfortable with it, and that this is how you move food around in your mouth and swallow. He has all these beautiful teeth, and still doesn't really know how to use them.
Certain foods for certain times of day is very prevalent in our culture. Think about all the marketing that goes into promoting pancakes for breakfast or steak for dinner. McDonald's will only sell you an Egg McMuffin up until 11am, after that it's hamburger time. Diner restaurants will have "Breakfast served all day," emblazoned across their menu so that you can feel awesome about having pancakes for dinner. Kids that are learning to eat need to learn that all food is the same, all food has the same value. It's harder to be picky if no food is held up on a pedestal over others. They may still have favorite flavors, but WE don't need to be the ones telling them that cake is awesome, green beans are gross, and basically training them that the non-nutritious dessert is better than the nutritious chicken, green bean and yam casserole. There is also no reason that you can't have carrots for breakfast and cereal for dinner. I know I'm subject to this: I make Gabriel cereal for breakfast, a protein/veggie mix for lunch and dinner and give him yogurt and fruit for snack. I'm trying to learn to be more flexible and give him whatever works, but since I spent so long making tube recipes, counting calories, and ensuring he gets the USDA mandated balance of foods, it's hard to make that transition.
Raising kids seems to be all about tuning out the world and its many conflicting messages. Food is just another one to learn to ignore. If he's happy and healthy, that's what matters. Now, why can't I remember that on the difficult eating days?
As parents, we are so focused on getting our child to eat, that it becomes about the food on the plate and the amount taken during the day, and ceases to be about giving the child a good eating experience. If food becomes a battle every time, and food creates negative emotions (i.e. from force feeding), it can also trigger the fight-or-flight response. Besides revving up your heart rate and breathing and making it less likely that you want to sit still and eat, it suppresses your appetite, so you're not even hungry! Talk about having the opposite effect from the intended.
Another general belief is that if you don't get your child to eat a certain amount each day (for us, as prescribed by the dieticians), you are failures as parents. No one comes right out and says it, but you feel it. Until I found a dietician I could work well with, I hated our GI appointments, because I always felt like there was this underlying judgment going on -- that it was my fault that Gabriel couldn't hold down the required calories. One of the hardest things we are trying to learn to do right now is to let Gabriel say when he's full. We want to respect his decision, even when it means he's only taken half of his "required" meal, but it's SO HARD. When is it behavioral, and when is he really full? I don't know if it is any easier for "normal" parents, because they don't have a doctor prescribed calorie goal. Gabriel's feeding has been regimented for so long, I don't know how we'll ever get comfortable with the ad-lib stage. This "clean your plate" mentality and the expectation that it is completely the parent's fault if it doesn't happen is hard to overcome. If we want to set up a hunger cycle and teach Gabriel about "full" and "hungry", we have to let him have a say.
Other cultural/environmental expectations that I find myself subject to are "don't play with your food", "don't talk with your mouth full/don't chew with your mouth open", and the belief that certain foods are for certain times of day. We are expected to teach our children table manners pretty much as soon as they start eating. However, the gateway to accepting food by mouth is the fingers. Touching, feeling, and playing with food makes a child more comfortable with that food, and by extension, they are comfortable putting it in their mouth. So we are ENCOURAGED to give Gabriel food to play with; it's a success if he will touch something new. We've seen this in action. When he first started, he would not even touch food, let alone put it in his mouth. It wasn't until he was comfortable touching purees and playing with a spoon that we were able to put the food on the spoon and into his mouth. Chewing and talking with a full mouth is also encouraged on our part, to show Gabriel the mechanics of eating, that we're comfortable with it, and that this is how you move food around in your mouth and swallow. He has all these beautiful teeth, and still doesn't really know how to use them.
Certain foods for certain times of day is very prevalent in our culture. Think about all the marketing that goes into promoting pancakes for breakfast or steak for dinner. McDonald's will only sell you an Egg McMuffin up until 11am, after that it's hamburger time. Diner restaurants will have "Breakfast served all day," emblazoned across their menu so that you can feel awesome about having pancakes for dinner. Kids that are learning to eat need to learn that all food is the same, all food has the same value. It's harder to be picky if no food is held up on a pedestal over others. They may still have favorite flavors, but WE don't need to be the ones telling them that cake is awesome, green beans are gross, and basically training them that the non-nutritious dessert is better than the nutritious chicken, green bean and yam casserole. There is also no reason that you can't have carrots for breakfast and cereal for dinner. I know I'm subject to this: I make Gabriel cereal for breakfast, a protein/veggie mix for lunch and dinner and give him yogurt and fruit for snack. I'm trying to learn to be more flexible and give him whatever works, but since I spent so long making tube recipes, counting calories, and ensuring he gets the USDA mandated balance of foods, it's hard to make that transition.
Raising kids seems to be all about tuning out the world and its many conflicting messages. Food is just another one to learn to ignore. If he's happy and healthy, that's what matters. Now, why can't I remember that on the difficult eating days?
Tuesday, February 18, 2014
Bipedal Baby
Yes, the joyous/dreaded moment has arrived. Gabriel started WALKING a few steps about a couple weeks ago, and now he is quite good at it. He still enjoys crawling since he can get around faster that way, and the funny knee hop is also a favorite. But he is pushing up to standing on his own and walks across our (admittedly small) apartment all by himself. Walking is not without its trials and tribulations. He falls. A lot. But he's getting good at detouring to a chair or wall to steady himself before he completely loses his balance. What's next? Hiking the Wonderland Trail with Daddy? Running a marathon? Only time will tell what Gabriel will do on two legs.
Manners
Over the past month, we have been adjusting to our new normal, a baby that eats! Gabriel has been taking all of his food by mouth and we only have to give medications and water through his tube. However, he has come up with some interesting ways of letting us know when he is done with food (whether the meal is over or not). Spoon throwing had become a daily sport in our house: how far can you fling it? Can you get it under the couch? What sort of splatter pattern can you create? And so on.
So, Mommy decided to take a stand. Spoon throwing is unacceptable behavior; you get three chances and then everything gets taken away and you get ignored for the length of time it takes me to wash the dishes. It took about two weeks, but we managed to get spoon throwing under control. In the end, I had to tell him "no" and give him a 10 second time out (turn him around and ignore him) every time he threw a spoon to really help him make the connection that the spoon-launching was the undesirable behavior. Now, he usually makes it through a meal without the spoon-toss event. He has learned to hand us the spoon if he doesn't want it or he will try to lean over and put it on the table. Now we seem to be moving on to recreational vomiting (again!). Remember that from awhile back? It used to be a great way to get Mommy and Daddy's attention in a hurry. It took us awhile to figure out that's what was going on and that we had to ignore it, mess or no mess. Anyway, he hasn't figured out the appropriate way to let us know that he is FULL and DONE, even though we use the baby sign language "all done" at the end of every meal. He has yet to present that sign to us. It's an ever changing landscape of behaviors.
We have been working on drinking and adding textures to his food, but so far no success. It's a little easier this time, since the spoon feeding had a long lead up and then one day he literally woke up and knew how to do it, I hold out the hope that if we keep introducing the ideas, he'll get it eventually.
So, Mommy decided to take a stand. Spoon throwing is unacceptable behavior; you get three chances and then everything gets taken away and you get ignored for the length of time it takes me to wash the dishes. It took about two weeks, but we managed to get spoon throwing under control. In the end, I had to tell him "no" and give him a 10 second time out (turn him around and ignore him) every time he threw a spoon to really help him make the connection that the spoon-launching was the undesirable behavior. Now, he usually makes it through a meal without the spoon-toss event. He has learned to hand us the spoon if he doesn't want it or he will try to lean over and put it on the table. Now we seem to be moving on to recreational vomiting (again!). Remember that from awhile back? It used to be a great way to get Mommy and Daddy's attention in a hurry. It took us awhile to figure out that's what was going on and that we had to ignore it, mess or no mess. Anyway, he hasn't figured out the appropriate way to let us know that he is FULL and DONE, even though we use the baby sign language "all done" at the end of every meal. He has yet to present that sign to us. It's an ever changing landscape of behaviors.
We have been working on drinking and adding textures to his food, but so far no success. It's a little easier this time, since the spoon feeding had a long lead up and then one day he literally woke up and knew how to do it, I hold out the hope that if we keep introducing the ideas, he'll get it eventually.
Tuesday, January 14, 2014
The New Normal
Whenever you see families with special needs children (and I guess when people look at us), you wonder how they do it. How do they deal with the extra challenges day in and day out? The answer really is that you get used to doing things differently; it becomes normal. We have been tubefeeding for over a year to the point where going out and hooking up the baby while out and about is really not a huge deal. We have our extra bag and extra feed kit and it has just become part of the process.
A week ago, we decided to try giving Gabriel all of his food orally, since he was eating so well. We wanted to see what his benchmark was; I didn't really expect him to take everything, but I wanted to see where he stopped so we knew what to work toward. To our surprise, he has been taking ALL his calories orally. Every day. And so now we have to adjust to a new normal. One that doesn't included a food pump, feed bags and endless use of the Blendtec. We aren't tube free, he still doesn't drink, but all that is going through that tube is water and medications. Every morning I wake up and wonder if it's all going to just go away, but after a week, I think eating is here to stay.
So now we're trying to think more like those other parents. The ones that have always spoon-fed their children. We can't just hook him up to his lunch on the drive home from church; we have to make time and space to feed his lunch by spoon. I even packed up his pump and put it away, although we will keep it awhile in case he backslides. It's odd being the parent of a "special needs" child that will eventually outgrow his "special needs". You sit on the fence between the two, not really belonging to either group, but trying to understand the challenges of each. We'll keep trying. And in the meantime, hopefully Gabriel will keep eating!
A week ago, we decided to try giving Gabriel all of his food orally, since he was eating so well. We wanted to see what his benchmark was; I didn't really expect him to take everything, but I wanted to see where he stopped so we knew what to work toward. To our surprise, he has been taking ALL his calories orally. Every day. And so now we have to adjust to a new normal. One that doesn't included a food pump, feed bags and endless use of the Blendtec. We aren't tube free, he still doesn't drink, but all that is going through that tube is water and medications. Every morning I wake up and wonder if it's all going to just go away, but after a week, I think eating is here to stay.
So now we're trying to think more like those other parents. The ones that have always spoon-fed their children. We can't just hook him up to his lunch on the drive home from church; we have to make time and space to feed his lunch by spoon. I even packed up his pump and put it away, although we will keep it awhile in case he backslides. It's odd being the parent of a "special needs" child that will eventually outgrow his "special needs". You sit on the fence between the two, not really belonging to either group, but trying to understand the challenges of each. We'll keep trying. And in the meantime, hopefully Gabriel will keep eating!
Wednesday, January 1, 2014
The gift of St. Nicholas
When we first started our g-tube journey, we heard from several sources that at some point the child would appear to have been visited by the "feeding fairy" and just GET IT. Like a switch flipping or the little cartoon light bulb clicking on above their head. Well, it's been a year and a half since we got the g-tube and it looks like the fairy has finally paid us a visit. I'm convinced the fairy's name is St. Nicholas.
St. Nicholas day is celebrated on either Dec. 6 or Dec. 19, depending on whether you follow the modern (Gregorian) calendar or the old (Julian) calendar. Between the two celebrations, several things happened. My husband had two very promising job interviews and and Gabriel got sick. It was just a mild GI bug that had us feeding him pedialyte and chicken broth for a day or two, and resulting in a very hungry baby. During this time we were praying to St. Nicholas both for a good outcome on my husband's interviews and for Gabriel's health. On a whim, when Gabriel seemed to be keeping some light tube feedings down, Thomas tried spoon feeding him, and he did fantastic, proving to us that the skill set was in there somewhere. However, over the next two days, his spoon skills declined back down to the occasional tastes. On St. Nicholas day (old style), I discussed starting hunger trials with Gabriel after the Christmas break with his therapist. During the chat, we were talking about how ideally, Gabriel would wean himself off the tube as he took more and more spoon food, and I said (and she concurred) that I didn't think that would happen with him. Silly me.
The feeding fairy (a.k.a. St. Nicholas) must have visited us that night because the next morning, Gabriel started eating from a spoon as if he had been doing it forever. In fact, he has been doing so well, that I just cut his tube feedings by half three days ago and spoon feed about a 4-5oz. of food into him at each meal. It is a lot to ask of him -- going from full tube feeds to requiring that he take half by mouth, but he doesn't seem to mind. We normally make his tube food every five days, but this time, when we run out, I think I may just see if he's ready to go all the way.
Gabriel still does not drink. We've been concentrating on spoon time, so cup training has suffered, but that will be our next goal. Even so, pushing fluids through the tube is a lot easier and faster than waiting for a meal to be fed via tube. At the rate he had been going at the beginning of December, I thought we would still have a year or so on the tube as we slowly weaned him off, but maybe we will have a Pascha (Easter) miracle this year! It's all up to him...through the prayers of his Saintly Guardians.
Oh, and yes, my husband got the job, too! :)
St. Nicholas day is celebrated on either Dec. 6 or Dec. 19, depending on whether you follow the modern (Gregorian) calendar or the old (Julian) calendar. Between the two celebrations, several things happened. My husband had two very promising job interviews and and Gabriel got sick. It was just a mild GI bug that had us feeding him pedialyte and chicken broth for a day or two, and resulting in a very hungry baby. During this time we were praying to St. Nicholas both for a good outcome on my husband's interviews and for Gabriel's health. On a whim, when Gabriel seemed to be keeping some light tube feedings down, Thomas tried spoon feeding him, and he did fantastic, proving to us that the skill set was in there somewhere. However, over the next two days, his spoon skills declined back down to the occasional tastes. On St. Nicholas day (old style), I discussed starting hunger trials with Gabriel after the Christmas break with his therapist. During the chat, we were talking about how ideally, Gabriel would wean himself off the tube as he took more and more spoon food, and I said (and she concurred) that I didn't think that would happen with him. Silly me.
The feeding fairy (a.k.a. St. Nicholas) must have visited us that night because the next morning, Gabriel started eating from a spoon as if he had been doing it forever. In fact, he has been doing so well, that I just cut his tube feedings by half three days ago and spoon feed about a 4-5oz. of food into him at each meal. It is a lot to ask of him -- going from full tube feeds to requiring that he take half by mouth, but he doesn't seem to mind. We normally make his tube food every five days, but this time, when we run out, I think I may just see if he's ready to go all the way.
Gabriel still does not drink. We've been concentrating on spoon time, so cup training has suffered, but that will be our next goal. Even so, pushing fluids through the tube is a lot easier and faster than waiting for a meal to be fed via tube. At the rate he had been going at the beginning of December, I thought we would still have a year or so on the tube as we slowly weaned him off, but maybe we will have a Pascha (Easter) miracle this year! It's all up to him...through the prayers of his Saintly Guardians.
Oh, and yes, my husband got the job, too! :)
Saturday, December 28, 2013
OF COURSE that's how you do it, Dad
By Thomas Eric - Dad
Last year when Gabriel's doctor was recommending a gastrostomy so that Gabriel could receive food through a stomach tube, he was telling us the benefits: He'd get to go home from the hospital sooner, he wouldn't have to deal with a nasal-gastric tube down his throat, and he wouldn't develop oral aversion, which is when the baby says, "I hate having anything in my mouth because of this awful tube down my throat!"
Gabriel's performance on the bottle at that point was pretty bad -- only getting 30 percent of his food through the bottle or from breastfeeding, and the doctor said it was unlikely he'd pick up the pace any time soon.
But, I said to the doctor, "Other parents tell me that when they're trying to teach their child to do something correctly like put on their own pants or wash their hands, they'll nag and nag and nag the child and it'll never work, until one day the child just does it without being asked. The parents will want to know what caused them to finally make the change, but they won't get a meaningful answer. The child will just say, 'Of course that's how you do it, Dad. Everyone knows that.' Is there any chance some extra maturity could cause the "feeding switch" inside him to just flip and he'd get it?"
And the doctor laughed good-naturedly at my story and said that it probably wouldn't work. And he got the gastrostomy.
Over the past few days, though, he's gotten this eating thing. There appears to be some kind of switch that just flipped. He'll take one-quarter cup of full-fat Greek yogurt from the spoon without complaining, and he'll take a full bin of baby-food vegetable beef. Those two together equal about 100-125 calories, which is about one-third of what he needs for one meal.
Previously, it took a great deal of trickery to get him to open his mouth, and then he would begrudgingly accept a small amount of food (he'd gag on large amounts) and even then he'd let us know he'd had enough after five or six tiny spoonfuls.
We're very happy about this progress. But we're wondering what on earth made the difference. We'll probably never know. He seems to be saying, "Of course that's how you do it, Dad."
Last year when Gabriel's doctor was recommending a gastrostomy so that Gabriel could receive food through a stomach tube, he was telling us the benefits: He'd get to go home from the hospital sooner, he wouldn't have to deal with a nasal-gastric tube down his throat, and he wouldn't develop oral aversion, which is when the baby says, "I hate having anything in my mouth because of this awful tube down my throat!"
Gabriel's performance on the bottle at that point was pretty bad -- only getting 30 percent of his food through the bottle or from breastfeeding, and the doctor said it was unlikely he'd pick up the pace any time soon.
But, I said to the doctor, "Other parents tell me that when they're trying to teach their child to do something correctly like put on their own pants or wash their hands, they'll nag and nag and nag the child and it'll never work, until one day the child just does it without being asked. The parents will want to know what caused them to finally make the change, but they won't get a meaningful answer. The child will just say, 'Of course that's how you do it, Dad. Everyone knows that.' Is there any chance some extra maturity could cause the "feeding switch" inside him to just flip and he'd get it?"
And the doctor laughed good-naturedly at my story and said that it probably wouldn't work. And he got the gastrostomy.
Over the past few days, though, he's gotten this eating thing. There appears to be some kind of switch that just flipped. He'll take one-quarter cup of full-fat Greek yogurt from the spoon without complaining, and he'll take a full bin of baby-food vegetable beef. Those two together equal about 100-125 calories, which is about one-third of what he needs for one meal.
Previously, it took a great deal of trickery to get him to open his mouth, and then he would begrudgingly accept a small amount of food (he'd gag on large amounts) and even then he'd let us know he'd had enough after five or six tiny spoonfuls.
We're very happy about this progress. But we're wondering what on earth made the difference. We'll probably never know. He seems to be saying, "Of course that's how you do it, Dad."
Monday, December 23, 2013
Silver Lining
We've been having a terrible time with keeping Gabriel healthy this fall/winter. It seems like as soon as he gets over one thing, a week later we're starting another round of respiratory and/or GI issues. The worst one was right around the beginning of November. Gabriel caught a cold and seemed to recover, but then a random cough set in. By the end of the week, we ended up taking him to the ER for labored breathing. He wasn't admitted, but with the ER's administration of albuterol and his pediatrician following up with another steroid and antibiotics, he finally kicked that infection. I have been so worried this year about RSV since we seem to be cycling through respiratory infections. Luckily, he was approved for a second year of Synagis (this doesn't happen often), so even if he does catch RSV, it probably won't land him in the hospital.
Anyway, so the respiratory thing he caught two weeks ago morphed into a GI upset where he was throwing up and had diarrhea. The only thing he was keeping down was chicken broth and pedialyte for a couple days. So, on the day where he was starting to keep down mild solids and small, slow feeds again, my husband decided to try offering the spoon. We knew he HAD to be hungry, because he hadn't been getting a lot of nutrition over the past few days. And it was magic. He took about 1-3 Tbsp. BY MOUTH at EACH of FOUR spoon tries that day. The next day or two, he wasn't that into spoon food again, but we knew it was in there somewhere. I discussed starting hunger trials with his SLP and we will put together the protocols after the Christmas break. However, I think Gabriel heard us talking, because the next day THIS happened (click to see video).
He has been doing this for four days now and it is kind of awesome. The best part is on Sunday, he took Communion on the first try with no avoidance behaviors whatsoever. Glory to God!
Anyway, so the respiratory thing he caught two weeks ago morphed into a GI upset where he was throwing up and had diarrhea. The only thing he was keeping down was chicken broth and pedialyte for a couple days. So, on the day where he was starting to keep down mild solids and small, slow feeds again, my husband decided to try offering the spoon. We knew he HAD to be hungry, because he hadn't been getting a lot of nutrition over the past few days. And it was magic. He took about 1-3 Tbsp. BY MOUTH at EACH of FOUR spoon tries that day. The next day or two, he wasn't that into spoon food again, but we knew it was in there somewhere. I discussed starting hunger trials with his SLP and we will put together the protocols after the Christmas break. However, I think Gabriel heard us talking, because the next day THIS happened (click to see video).
He has been doing this for four days now and it is kind of awesome. The best part is on Sunday, he took Communion on the first try with no avoidance behaviors whatsoever. Glory to God!
Sunday, December 1, 2013
What do you feed a tube fed child?
We made a big push to get Gabriel off formula as soon as possible, and at one year adjusted age, we were given the green light. It was a great decision for him as it has increased his willingness to work on spoon-feeding and investigate foods, and it has made his reflux almost completely disappear. Most kids, you feed them what they'll eat, and they tell you when they're hungry and you do your best to make sure it's all nutritionally balanced. With Gabriel, he can't tell us he's hungry or when he's full, so he eats on a fairly strict schedule and we have a set number of calories prescribed by the dietician that we need to try to get into him every day. It can be an overwhelming task -- how much of each type of food do you need to give them? Do you need to track each type of calorie or is overall calories good enough? Is fat bad? Is sugar bad? What foods are allowed? Some kids need a specific diet to manage certain disorders, but Gabriel is okay for just a regular diet.
I started with the Choose Your Plate guidelines through the USDA. It's the new food pyramid. On their website, they have several diet plans that you can choose from based on age and calorie requirements. I use the 1000 calorie, 2-year-old plan which calls for 3 oz. of grains, 1 cup veggies, 1 cup fruits, 2 oz. meat/protein, 2 cups dairy, and 1 Tbsp oils. It also tells you sugar and sodium limits per day, but honestly, I don't track that. When they made this plan, they tell you to use 2% milk and limit fats -- according to the dietician, full fat anything is recommended for up to two years, so we look for foods that give us the highest calories per volume. At full recipe (including the nighttime feed), this yields 1313 calories per day. I try to give a variety of things and came up with this diet plan (this is the most recent incarnation, it's gone through many changes based on Gabriel's needs and tolerances):
Breakfast:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/2 container (1.25 oz.) baby food prunes (for constipation management)
1/8 c. papaya (enzymatic foods are good for digestion)
1/4 c. mixed fruit (any variety)
1/3 c. whole milk
1/8 c. canned coconut milk
1/2 Tbsp. olive oil
1 Flintstones multivitamin
Lunch:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/4 slice wheat bread
1/8 c. prune juice (more constipation management)
3 Tbsp. (3/16 c.) carrot or squash (low cal orange veggies)
1/4 c. peas (high cal green veggie)
1 Tbsp. avocado puree (just all around good for you!)
1/4 jar baby food meat (any variety)
1/4 egg
1/8 c. Trader Joe's full fat greek yogurt
1/6 c. whole milk
1/4 Tbsp. olive oil
Dinner:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/4 slice wheat bread
1/8 c. prune juice
3 Tbsp. (3/16 c.) green beans, spinach, or broccoli (low cal green veggies)
1/4 c. yam (high cal orange veggie)
1 Tbsp. avocado puree
1/4 can salmon (2 oz. can)
1/4 egg
1/8 c. Trader Joe's full fat greek yogurt
1/6 c. whole milk
1/4 Tbsp. olive oil
Snack:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/2 slice wheat bread
1/8 c. apple or pear juice
1/8 c. mixed fruit (any variety)
1/4 c. Trader Joe's full fat greek yogurt
1/3 c. whole milk
While we could mix this up daily, we don't due to time constraints and the fact that this recipe yields too much food per meal for him to handle at once. We find this out by tracking his throwing-up threshold. Trial and error can be messy. Anyway, we make up a quadruple batch of each meal at a time, and divide it into five containers, effectively giving us an 80% recipe. Since we use such high calorie items, he's still getting 1074 calories per day (including the nighttime feed below).
These four feeds don't quite make up everything he needs; we're still working on increasing his volume tolerance, so he also gets a nighttime bolus feed that is set at half the rate of daily feeds to make up the difference. I just recently moved some of the nighttime food over to his daily recipes, so here's where we are right now:
Night Feed:
1/4 c. Trader Joe's full fat greek yogurt
1/8 c. canned coconut milk
All our blends do tend to be a little bit too thick for the pump to handle, especially when they're fresh made, so we thin them out with a small amount of milk when we're ready to feed. This has the added benefit of increasing the calorie count and giving him more calcium. We usually freeze our blends once they're made and thaw them out the day before they're needed.
While tubefeeding is not ideal, and we hope to move beyond it someday, it does allow us to feed him quite a nutritious balance of foods every single day!
I started with the Choose Your Plate guidelines through the USDA. It's the new food pyramid. On their website, they have several diet plans that you can choose from based on age and calorie requirements. I use the 1000 calorie, 2-year-old plan which calls for 3 oz. of grains, 1 cup veggies, 1 cup fruits, 2 oz. meat/protein, 2 cups dairy, and 1 Tbsp oils. It also tells you sugar and sodium limits per day, but honestly, I don't track that. When they made this plan, they tell you to use 2% milk and limit fats -- according to the dietician, full fat anything is recommended for up to two years, so we look for foods that give us the highest calories per volume. At full recipe (including the nighttime feed), this yields 1313 calories per day. I try to give a variety of things and came up with this diet plan (this is the most recent incarnation, it's gone through many changes based on Gabriel's needs and tolerances):
Breakfast:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/2 container (1.25 oz.) baby food prunes (for constipation management)
1/8 c. papaya (enzymatic foods are good for digestion)
1/4 c. mixed fruit (any variety)
1/3 c. whole milk
1/8 c. canned coconut milk
1/2 Tbsp. olive oil
1 Flintstones multivitamin
Lunch:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/4 slice wheat bread
1/8 c. prune juice (more constipation management)
3 Tbsp. (3/16 c.) carrot or squash (low cal orange veggies)
1/4 c. peas (high cal green veggie)
1 Tbsp. avocado puree (just all around good for you!)
1/4 jar baby food meat (any variety)
1/4 egg
1/8 c. Trader Joe's full fat greek yogurt
1/6 c. whole milk
1/4 Tbsp. olive oil
Dinner:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/4 slice wheat bread
1/8 c. prune juice
3 Tbsp. (3/16 c.) green beans, spinach, or broccoli (low cal green veggies)
1/4 c. yam (high cal orange veggie)
1 Tbsp. avocado puree
1/4 can salmon (2 oz. can)
1/4 egg
1/8 c. Trader Joe's full fat greek yogurt
1/6 c. whole milk
1/4 Tbsp. olive oil
Snack:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/2 slice wheat bread
1/8 c. apple or pear juice
1/8 c. mixed fruit (any variety)
1/4 c. Trader Joe's full fat greek yogurt
1/3 c. whole milk
While we could mix this up daily, we don't due to time constraints and the fact that this recipe yields too much food per meal for him to handle at once. We find this out by tracking his throwing-up threshold. Trial and error can be messy. Anyway, we make up a quadruple batch of each meal at a time, and divide it into five containers, effectively giving us an 80% recipe. Since we use such high calorie items, he's still getting 1074 calories per day (including the nighttime feed below).
These four feeds don't quite make up everything he needs; we're still working on increasing his volume tolerance, so he also gets a nighttime bolus feed that is set at half the rate of daily feeds to make up the difference. I just recently moved some of the nighttime food over to his daily recipes, so here's where we are right now:
Night Feed:
1/4 c. Trader Joe's full fat greek yogurt
1/8 c. canned coconut milk
All our blends do tend to be a little bit too thick for the pump to handle, especially when they're fresh made, so we thin them out with a small amount of milk when we're ready to feed. This has the added benefit of increasing the calorie count and giving him more calcium. We usually freeze our blends once they're made and thaw them out the day before they're needed.
While tubefeeding is not ideal, and we hope to move beyond it someday, it does allow us to feed him quite a nutritious balance of foods every single day!
Observational Learning and Parallel Play
So, in the past two months since I've written about Gabriel, he has made quite a few advancements. We started him in a twice-weekly therapy playgroup where he has the opportunity to interact with other kids and observe how they play and eat. The first few times he went, he watched the other kids spoon-feeding very intently. He certainly had his "serious face" on. He really enjoys going to playgroup and while he doesn't actively play with the other kids (he's still a little young for that), he does participate in the group activities.
I think watching other kids has really contributed to some new behaviors. We just returned from a trip to visit my parents and my brother came out with his family as well. Cousin Heidi is one month younger (chronologically) than Gabriel, but she is 3 months ahead, developmentally speaking. She walks, has several words, and sits at the table like a little lady with her grown-up plate and silverware. We sat them down to play with each other, and after an initial "I look at you and you look at me" period, they did start playing side by side and sometimes playing together with the same toy. After several days of sitting at the table with Heidi, Gabriel had several good spoon-feeding sessions: he would open his mouth for food and also put his spoons in his bowl and then put them in his mouth. He continues to be more likely to investigate food and puts many more things in his mouth than he used to, which all seems to be in line with his current developmental stage of "self feeding", even though he doesn't quite have the skill set to successfully make that happen.
Once we returned home, he also started pulling up to standing on anything and everything. And since he can now reach his bookshelf, he likes to pull all the books off the shelf and even sits down to page through them. His new thing just this past week is restacking them on a different shelf. How organizational.
He is growing so fast, and every day is something new.
I think watching other kids has really contributed to some new behaviors. We just returned from a trip to visit my parents and my brother came out with his family as well. Cousin Heidi is one month younger (chronologically) than Gabriel, but she is 3 months ahead, developmentally speaking. She walks, has several words, and sits at the table like a little lady with her grown-up plate and silverware. We sat them down to play with each other, and after an initial "I look at you and you look at me" period, they did start playing side by side and sometimes playing together with the same toy. After several days of sitting at the table with Heidi, Gabriel had several good spoon-feeding sessions: he would open his mouth for food and also put his spoons in his bowl and then put them in his mouth. He continues to be more likely to investigate food and puts many more things in his mouth than he used to, which all seems to be in line with his current developmental stage of "self feeding", even though he doesn't quite have the skill set to successfully make that happen.
Once we returned home, he also started pulling up to standing on anything and everything. And since he can now reach his bookshelf, he likes to pull all the books off the shelf and even sits down to page through them. His new thing just this past week is restacking them on a different shelf. How organizational.
He is growing so fast, and every day is something new.
Monday, October 7, 2013
Busy Boy
Gabriel is such a busy, busy boy! In the past month, he has gained a lot of ground. At the beginning of September, he took his first hike with us. Not only his first hike, but we actually hooked him up to his food pump and fed him on the hike. I knew I was chancing having to do a shirt change and an emergency hair wash, but he didn't reflux at all! We've done a few more hikes since, and he seems to like the scenery.
A week later, he took his first airplane ride to visit his great-grandparents. He did quite well, and even was able to have his carseat on the plane to relax in. Grandma and Grandpa's house had quite a bit of clear floor, so he was able to practice crawling a lot.
Here we all are at the Peoria Zoo, grandparents plus cousin Lindy and her daughter Eliana. As you can see, Gabriel is becoming quite the traveler. However, he still wants to get there under his own power. He motors around church and our house all the time. He is even pulling to standing using his rocker chair. It won't be long before he's hiking on his own!
We have a few other notable moments to share. Gabriel did catch a minor respiratory something on the plane, but came through it with just Vaporub on the feet. It did mean he was still having reflux episodes every day, but once he got over the cold.....we had WEEK with NO REFLUX. Oh my! We even raised his feed rate from 235 mL/hr to 400 mL/hr and he did great. I think real food all the time is making a big difference! Then we got ambitious and raised his actual food amount and Mr. McBarfyPants has made a reappearance. We're dropping the volumes back down and hoping for our non-barfy baby back, because when he chooses to barf all over the grocery cart full of groceries, Daddy's shoes and Mommy's purse....well, let's just say he's lucky he's cute. Because I think that may be all that saved him.
Gabriel's SLP has documented his first word: "hi". If you wave and say "hi" at him, he does a good approximation of the word back at you. It is intentional. He is also using "buh-buh" as his intentional word of choice. It started when we played with blowing bubbles at him and saying the word (bu-bbles), and he started saying it when we picked up the bubble bottle. We now get buh-buh for a lot of things. He can make the mama and dada sounds, but he doesn't pin them to us yet. We will hear him babbling to his toys in his playpen, though. I wonder what he's saying?
On September 24, Gabriel celebrated his one year anniversary of his graduation from the NICU. We decided that was a special day and deserved cake. :)
If you want to see the latest Gabriel photos, go visit his photo gallery and eventually, I will get things up on Facebook, too.
A week later, he took his first airplane ride to visit his great-grandparents. He did quite well, and even was able to have his carseat on the plane to relax in. Grandma and Grandpa's house had quite a bit of clear floor, so he was able to practice crawling a lot.
Here we all are at the Peoria Zoo, grandparents plus cousin Lindy and her daughter Eliana. As you can see, Gabriel is becoming quite the traveler. However, he still wants to get there under his own power. He motors around church and our house all the time. He is even pulling to standing using his rocker chair. It won't be long before he's hiking on his own!
We have a few other notable moments to share. Gabriel did catch a minor respiratory something on the plane, but came through it with just Vaporub on the feet. It did mean he was still having reflux episodes every day, but once he got over the cold.....we had WEEK with NO REFLUX. Oh my! We even raised his feed rate from 235 mL/hr to 400 mL/hr and he did great. I think real food all the time is making a big difference! Then we got ambitious and raised his actual food amount and Mr. McBarfyPants has made a reappearance. We're dropping the volumes back down and hoping for our non-barfy baby back, because when he chooses to barf all over the grocery cart full of groceries, Daddy's shoes and Mommy's purse....well, let's just say he's lucky he's cute. Because I think that may be all that saved him.
Gabriel's SLP has documented his first word: "hi". If you wave and say "hi" at him, he does a good approximation of the word back at you. It is intentional. He is also using "buh-buh" as his intentional word of choice. It started when we played with blowing bubbles at him and saying the word (bu-bbles), and he started saying it when we picked up the bubble bottle. We now get buh-buh for a lot of things. He can make the mama and dada sounds, but he doesn't pin them to us yet. We will hear him babbling to his toys in his playpen, though. I wonder what he's saying?
On September 24, Gabriel celebrated his one year anniversary of his graduation from the NICU. We decided that was a special day and deserved cake. :)
If you want to see the latest Gabriel photos, go visit his photo gallery and eventually, I will get things up on Facebook, too.
Monday, September 2, 2013
On the Go!
I feel like a lot has happened in the past couple of weeks. Gabriel passed his one year adjusted mark, meaning that developmentally, he is equivalent to a one year old child. For any one year old, this means changes. The American Academy of Pediatrics recommends that children be breastfed exclusively until 6 months old and then continue with supplemental breastfeeding until one year old. From there, children can be transitioned to cow's milk and a completely solid food diet and things like honey can be introduced as well. At Gabriel's last GI appointment, the dietician told us we were DONE with preemie catch-up growth and gave us the okay to discontinue formula! Gabriel is now on a 100% blended food diet. We are still experimenting with what kinds of dairy he can tolerate -- it seems that whole milk still aggravates his reflux, but yogurt is fine, and we're trialing kefir right now. He did lose a little weight due to the massive calorie cut we had done in the past two months (due to the discontinuation of his night feeds -- I was nervous he was going to strangle himself with his feeding line), so the recipe I presented to his dietician brings him back up to 1000 calories per day. I also asked what a good weight gain goal for him is, and she said that after a year, they are only expected to gain about one pound every two months. That's a far cry from the pound or more per month he was expected to gain previously! His stats are now 20 lbs., 13 oz., 2' 6", and he's wearing 18 mo. size clothes (although the pants are a bit big, but he needs the length).
We're also working a lot with him and the dog. Jisa isn't too sure about this little human that crawls around and invades her space. She gets grumbly with him if he touches her without warning. So, we are having him "play" with her by picking up her toys and dropping them. The best way to make friends with Jisa is to throw a toy. We also sit with them both a lot and praise her whenever she allows him to touch her without grumbling. I also praise her for moving and getting herself out of the situation, since she needs to know that "escaping" is a viable alternative as well.
Oh yes, and we're crawling now. It's the new big thing. When he's really going places, he does this little bunny hop maneuver, as if he's so excited that he can't be bothered to coordinate the alternating hands and feet. It's quite cute. But, no worries, he can crawl the "normal" way, too. He is also probably very close to standing. He pulls himself into a bouncing kneel all the time, and if you set him on his feet, he can balance pretty well. Given how much he wants to get down and move around when we're holding him, he's going to be one of those kids that runs all over everywhere. But, hey, exercise is good for all of us, right?
While Gabriel's social skills are quite good, he is still working on the eating part of life. The coordination that comes with crawling as well as the switch off formula are both things that are supposed to help him in the mouth manipulation/eating side of things, too. We have actually had some fairly good spoon sessions with him recently. Fairly good, meaning he lets us put a spoon in his mouth about 4-5 times without complaining about it or gagging. So, we're still a long way from eating, but that small amount of progress is a BIG DEAL. There's an awesome video that we put on Facebook, and as you can see from this photo, he enjoys playing with his food.
We're also working a lot with him and the dog. Jisa isn't too sure about this little human that crawls around and invades her space. She gets grumbly with him if he touches her without warning. So, we are having him "play" with her by picking up her toys and dropping them. The best way to make friends with Jisa is to throw a toy. We also sit with them both a lot and praise her whenever she allows him to touch her without grumbling. I also praise her for moving and getting herself out of the situation, since she needs to know that "escaping" is a viable alternative as well.
Oh yes, and we're crawling now. It's the new big thing. When he's really going places, he does this little bunny hop maneuver, as if he's so excited that he can't be bothered to coordinate the alternating hands and feet. It's quite cute. But, no worries, he can crawl the "normal" way, too. He is also probably very close to standing. He pulls himself into a bouncing kneel all the time, and if you set him on his feet, he can balance pretty well. Given how much he wants to get down and move around when we're holding him, he's going to be one of those kids that runs all over everywhere. But, hey, exercise is good for all of us, right?
While Gabriel's social skills are quite good, he is still working on the eating part of life. The coordination that comes with crawling as well as the switch off formula are both things that are supposed to help him in the mouth manipulation/eating side of things, too. We have actually had some fairly good spoon sessions with him recently. Fairly good, meaning he lets us put a spoon in his mouth about 4-5 times without complaining about it or gagging. So, we're still a long way from eating, but that small amount of progress is a BIG DEAL. There's an awesome video that we put on Facebook, and as you can see from this photo, he enjoys playing with his food.
Tuesday, August 13, 2013
One small step...one giant leap
In some parts of Gabriel's life, he is moving forward at an incredible pace. Literally. Just this past week, he has mastered forward motion. His crawling is super energetic, filled with lots of vocalizations and funny baby faces. His back legs do this silly little bunny hop when he gets super excited. It's like he can't get there fast enough. We noticed how good he had gotten at this while we were in Leavenworth this past week. We were having dinner at the Ride Around Washington's biking camp in a big field at the middle school and Thomas got up for seconds. Gabriel got right up on all fours and tried to follow. He went a fair distance, too. Now, if you put him on the floor, he's ready to go and takes off as quick as he can. Once he's on two legs, he's going to keep us extra busy!
The eating thing. Well...I was getting discouraged. He doesn't really want us to put anything in his mouth. He will even gag at tastes he's previously liked. The vibrating pacifier or spoon still works, but not as well as it used to. And you can forget swallowing anything bigger than a fingertip-sized taste of food. But his therapist pointed out several things. If you put food on his tray, he does dip his fingers in it. And then he takes his fingers to his lips. His mouth is still closed, but the food is right there under his nose for him to smell, and he's getting a lot of input from that. This is a behavior that he wasn't doing before. He would play with his food, but it would end up in his hair or all over his hands arms, but he never brought his hands to his mouth. So, this is a Big Deal. She also succeeded in getting him to touch is tongue to his fingers. Again, it doesn't sound like much, but the ability and willingness to lick, is another Step In The Right Direction.
I think sometimes, I'm getting so goal-oriented, that I'm missing the little victories. It's nice to have someone who knows all the little steps to look for and can point them out to you, so that we know we're making actual progress. It's just v-e-r-y s-l-o-w progress. This tube is going to be part of our life for awhile.
The best news is that I contacted the Blendtec company about the possibility of a medical discount for one of their blenders. Blendtec and Vitamix both have a stellar reputation in the blended diet community for being able to handle pureeing foods down to tube consistency. I still maintain that Gabriel does better on real food, and we're hoping to get the okay this month to make the switch completely off formula. So, having the proper equipment to feed him is essential. I've been borrowing Gabriel's grandparents' Vitamix, but with a possible switch to completely real food, I would have to be there about every 2-3 days to borrow the blender, and that's hard to do. Anyway, long story short, Blendtec is making it possible for us to acquire one of their awesome blenders! Yay!
The eating thing. Well...I was getting discouraged. He doesn't really want us to put anything in his mouth. He will even gag at tastes he's previously liked. The vibrating pacifier or spoon still works, but not as well as it used to. And you can forget swallowing anything bigger than a fingertip-sized taste of food. But his therapist pointed out several things. If you put food on his tray, he does dip his fingers in it. And then he takes his fingers to his lips. His mouth is still closed, but the food is right there under his nose for him to smell, and he's getting a lot of input from that. This is a behavior that he wasn't doing before. He would play with his food, but it would end up in his hair or all over his hands arms, but he never brought his hands to his mouth. So, this is a Big Deal. She also succeeded in getting him to touch is tongue to his fingers. Again, it doesn't sound like much, but the ability and willingness to lick, is another Step In The Right Direction.
I think sometimes, I'm getting so goal-oriented, that I'm missing the little victories. It's nice to have someone who knows all the little steps to look for and can point them out to you, so that we know we're making actual progress. It's just v-e-r-y s-l-o-w progress. This tube is going to be part of our life for awhile.
The best news is that I contacted the Blendtec company about the possibility of a medical discount for one of their blenders. Blendtec and Vitamix both have a stellar reputation in the blended diet community for being able to handle pureeing foods down to tube consistency. I still maintain that Gabriel does better on real food, and we're hoping to get the okay this month to make the switch completely off formula. So, having the proper equipment to feed him is essential. I've been borrowing Gabriel's grandparents' Vitamix, but with a possible switch to completely real food, I would have to be there about every 2-3 days to borrow the blender, and that's hard to do. Anyway, long story short, Blendtec is making it possible for us to acquire one of their awesome blenders! Yay!
Thursday, July 18, 2013
Change is good
In the zoo world, we do something called "enrichment". What this means is that we try to vary an animal's day using toys, scents, changing food presentation, offering novel foods, etc. In other words, we don't want them to get used to doing the same thing the same way everyday. It's good for the brain to have new stimulation, and it improves the overall well-being of the animal.
I don't know why I thought this wouldn't apply to my child. Or maybe I just didn't think about it. In some ways, Gabriel needs a schedule -- take a nap sometime during the day, bedtime around 9:00pm, and mealtimes are pretty fixed, but in others, he needs the variety.
He plays quite well in his playpen, but lately, whenever you put him in his area he cries for awhile and won't get distracted by any toys. I had put a plethora of toys in there and never changed them out, so I took all but a few out and put some new ones in, and he's much more likely to immediately play with them now, or at least only cry for a few minutes before being distracted by toys. So, I'm changing them out daily. Just 4-5 toys and a new book each day. It seems to be going well.
Change also seems to be a good thing in the food department, too. Papaya was awesome. We got so excited about it, we offered nothing but papaya (because it was working).......and he started rejecting it. Too much of a good thing, I guess. So, we gave him a break, and offered another novel food - pear/raspberry. That went over very well yesterday with the buzzy pacifier, and when I offered papaya again this morning, he was at least willing to play with it again. Now, we just have to remember that variety is the spice of life and change up his day everyday, at least with the small things.
I don't know why I thought this wouldn't apply to my child. Or maybe I just didn't think about it. In some ways, Gabriel needs a schedule -- take a nap sometime during the day, bedtime around 9:00pm, and mealtimes are pretty fixed, but in others, he needs the variety.
He plays quite well in his playpen, but lately, whenever you put him in his area he cries for awhile and won't get distracted by any toys. I had put a plethora of toys in there and never changed them out, so I took all but a few out and put some new ones in, and he's much more likely to immediately play with them now, or at least only cry for a few minutes before being distracted by toys. So, I'm changing them out daily. Just 4-5 toys and a new book each day. It seems to be going well.
Change also seems to be a good thing in the food department, too. Papaya was awesome. We got so excited about it, we offered nothing but papaya (because it was working).......and he started rejecting it. Too much of a good thing, I guess. So, we gave him a break, and offered another novel food - pear/raspberry. That went over very well yesterday with the buzzy pacifier, and when I offered papaya again this morning, he was at least willing to play with it again. Now, we just have to remember that variety is the spice of life and change up his day everyday, at least with the small things.
Thursday, July 11, 2013
Papaya the Magical Fruit and other milestones
We may have found our gateway food. Over the past week, Gabriel has shown a marked preference for papaya. We tried it on a whim, and it went over very well -- when we put it on his tray, he immediately puts his hands in it and also brings his hands to his face (but doesn't put them in his mouth). We started it in conjunction with a small vibrator (it was an electric flosser in a previous life) attached to his pacifier and he really liked the vibrations, and when we add the papaya to it, he will open his mouth voluntarily, bite down on the pacifier/flosser, and when it is removed will just suckle back the food and NOT gag. Thomas has also tried this with a spoon (both vibrating and not) and he will still eat it. Today, at the suggestion of his therapist, we offered applesauce simultaneously. He would turn his head away when the applesauce was brought to his mouth, but open up for the papaya. Now we're just on the hunt for foods with similar tastes and textures. I tried it myself, since papaya isn't something we normally eat, and it has an interesting taste and coats your mouth for a little while after swallowing. Definitely different from anything else we've offered before.
We have made another big change as well. Gabriel got his big boy crib and the first night he slept in it, we noticed just how much more space he has. It doesn't look that much bigger, but it's just enough that he can really move around quite a bit. This makes being hooked up to the night drip scary for me, since I can see the possibility of him getting it caught around his body or neck while sleeping. So, since we already were doing drastic night-time rate increases, I cut his night feed down to something he can take in an hour. Now he gets his last feed around 9:30pm after he's asleep. It runs for an hour while we're awake and can check on him, and when it's done we disconnect him and I don't have to worry anymore. Getting him off the night feed was a goal we were working toward anyway, we just did it a little sooner than planned. It's a good thing, since your body isn't designed to digest at night; so getting rid of the night feed will set up his body to get into a more normal daily GI rhythm.
Gabriel has also figured out how to sit up on his own. He's pretty one-sided, in that he always does it from all fours, puts his left leg out straight to balance and pushes up with his right leg bent. We're working on helping him realize there's another side, but it's nice that sitting up is his new go-to move instead of rolling over on his back and kicking he legs. He still really likes that, but he seems to like sitting up more at the moment. He's also seconds away from crawling forward for real. It'll happen any time now. If he wasn't in his high chair at this moment, it could have happened now. He's an active boy -- he's going to be hard to keep up with! Plus, now he is getting way more attached to us, so if we put him in his play pen or go out of sight for a minute he starts fussing. It's nice to see the appropriate social behavior of being attached to your parents, but at the same time it's exhausting for us!
We have made another big change as well. Gabriel got his big boy crib and the first night he slept in it, we noticed just how much more space he has. It doesn't look that much bigger, but it's just enough that he can really move around quite a bit. This makes being hooked up to the night drip scary for me, since I can see the possibility of him getting it caught around his body or neck while sleeping. So, since we already were doing drastic night-time rate increases, I cut his night feed down to something he can take in an hour. Now he gets his last feed around 9:30pm after he's asleep. It runs for an hour while we're awake and can check on him, and when it's done we disconnect him and I don't have to worry anymore. Getting him off the night feed was a goal we were working toward anyway, we just did it a little sooner than planned. It's a good thing, since your body isn't designed to digest at night; so getting rid of the night feed will set up his body to get into a more normal daily GI rhythm.
Gabriel has also figured out how to sit up on his own. He's pretty one-sided, in that he always does it from all fours, puts his left leg out straight to balance and pushes up with his right leg bent. We're working on helping him realize there's another side, but it's nice that sitting up is his new go-to move instead of rolling over on his back and kicking he legs. He still really likes that, but he seems to like sitting up more at the moment. He's also seconds away from crawling forward for real. It'll happen any time now. If he wasn't in his high chair at this moment, it could have happened now. He's an active boy -- he's going to be hard to keep up with! Plus, now he is getting way more attached to us, so if we put him in his play pen or go out of sight for a minute he starts fussing. It's nice to see the appropriate social behavior of being attached to your parents, but at the same time it's exhausting for us!
Tuesday, July 9, 2013
More on Radiation
Here's an article about cancer risks from medical radiation from Scientific American. Back in January, I (Dad) got in to quite an argument with a clinic over whether to do a swallow study on Gabriel, a procedure that would have involved a substantial dose of radiation. This provides an overview of research on the topic of radiation safety.
Monday, July 1, 2013
Onward and upward
When my brother and I were young, someone bought him the Mouth Sounds book for Christmas. It teaches you how to make all sorts of interesting sound effects using only your mouth, throat and hands. I think Gabriel may have been reading this book on the sly. He is daily giving us a range of rasberries, singing, babababa, dadada, singing/lip buzzing combos and I even heard a mamama yesterday. These aren't words, as in he doesn't use the same sound when addressing a particular thing or doing a particular activity, but he is experimenting with all the fun ways he can get Mom and Dad's attention.
Unfortunately, one of those ways is figuring out how to make the "retching" sound whenever he wants attention. Given his penchant for reflux, we ALWAYS pay attention to that sound, and he knows it. If you just ignore him, it can quickly turn into a real retch just from him making the sound over and over. Babies sure know how to punch a hole in your behavior modification protocols. Lucky for him, he's cute and smiley and we love him.
Gabriel is also working very hard on getting around. He sees toys or things he wants just out of reach and goes for it. However, he has only consistently succeeded in making backward progress. He can get up on all fours and rock, and usually lifts one arm way up and then the other, but coordinating the knees is still just a little bit beyond him. He did make a little forward progress the other day -- about a half-inch and it was probably the result of righting himself after tipping over sideways, but I will count it.
He can sit very well now. We've taken him both to the grocery store where he had to sit in the cart for awhile and to restaurants where he tried out the high chairs and he did very well. The best way to keep him busy at the restaurant is to give him a napkin or paper towel. Waving it around and shredding it can occupy him for quite awhile. He still hasn't quite managed to push himself into a sitting position, but we left him alone in the playpen for a few minutes yesterday and when we checked in on him, he was sitting, so he may have figured it out. We'll see if the trick repeats itself.
Our recent visit to the GI doctor really showed us how much progress he is making. He is not taking food in the mouth yet other than tastes, but we must be doing something right with the tube feeding because he is now 20 lbs., 9 oz. He's growing so well, the GI doctor said we could take him off the 24 calorie protocol and just make the formula normally (20 calorie). We are also completely dropping one formula feed during the day and condensing his night feeds down to 4 hours instead of 8 by increasing the rate. One of the key ways to get a kid to start eating is to set up the nighttime fast/morning hunger cycle by getting them off the night drip feeds. Plus, your body isn't designed to digest all night long, so eliminating the night feed is always a good goal. I'm actually still feeding the higher calorie formula at night, just because we dropped a feed, and we'll see how he grows. His next GI visit will be at his one year adjusted age mark, and the dietician said
we may get the go-ahead to drop formula completely and just give a mineral supplement!
I have started blending a set recipe for him that is (hopefully) nutritionally balanced and counting the calories that go into it. He gets oatmeal, yogurt, and fruit in the morning and oatmeal, meat, veggies, and yogurt in the evening. I also started adding some spices to it that are supposed to aid in gastric motility, anti-nausea and help with constipation. In the morning, he gets cardamom and cinnamon, and in the evening he gets basil and pepper. I don't really know if it helps a lot, but it sure smells good -- especially the cardamom!
When I saw our new goddaughter this weekend (she was two weeks old) it really underscored how big he's gotten and how far he has come.
Unfortunately, one of those ways is figuring out how to make the "retching" sound whenever he wants attention. Given his penchant for reflux, we ALWAYS pay attention to that sound, and he knows it. If you just ignore him, it can quickly turn into a real retch just from him making the sound over and over. Babies sure know how to punch a hole in your behavior modification protocols. Lucky for him, he's cute and smiley and we love him.
Gabriel is also working very hard on getting around. He sees toys or things he wants just out of reach and goes for it. However, he has only consistently succeeded in making backward progress. He can get up on all fours and rock, and usually lifts one arm way up and then the other, but coordinating the knees is still just a little bit beyond him. He did make a little forward progress the other day -- about a half-inch and it was probably the result of righting himself after tipping over sideways, but I will count it.
He can sit very well now. We've taken him both to the grocery store where he had to sit in the cart for awhile and to restaurants where he tried out the high chairs and he did very well. The best way to keep him busy at the restaurant is to give him a napkin or paper towel. Waving it around and shredding it can occupy him for quite awhile. He still hasn't quite managed to push himself into a sitting position, but we left him alone in the playpen for a few minutes yesterday and when we checked in on him, he was sitting, so he may have figured it out. We'll see if the trick repeats itself.
Our recent visit to the GI doctor really showed us how much progress he is making. He is not taking food in the mouth yet other than tastes, but we must be doing something right with the tube feeding because he is now 20 lbs., 9 oz. He's growing so well, the GI doctor said we could take him off the 24 calorie protocol and just make the formula normally (20 calorie). We are also completely dropping one formula feed during the day and condensing his night feeds down to 4 hours instead of 8 by increasing the rate. One of the key ways to get a kid to start eating is to set up the nighttime fast/morning hunger cycle by getting them off the night drip feeds. Plus, your body isn't designed to digest all night long, so eliminating the night feed is always a good goal. I'm actually still feeding the higher calorie formula at night, just because we dropped a feed, and we'll see how he grows. His next GI visit will be at his one year adjusted age mark, and the dietician said
we may get the go-ahead to drop formula completely and just give a mineral supplement!
I have started blending a set recipe for him that is (hopefully) nutritionally balanced and counting the calories that go into it. He gets oatmeal, yogurt, and fruit in the morning and oatmeal, meat, veggies, and yogurt in the evening. I also started adding some spices to it that are supposed to aid in gastric motility, anti-nausea and help with constipation. In the morning, he gets cardamom and cinnamon, and in the evening he gets basil and pepper. I don't really know if it helps a lot, but it sure smells good -- especially the cardamom!
When I saw our new goddaughter this weekend (she was two weeks old) it really underscored how big he's gotten and how far he has come.
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