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."

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!

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!

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.

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.

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.

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!

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.

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!

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.

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.

Natural Hair Fashions by Gabriel

Gabriel has been working with the TOP hair stylists to come up with new hot fashions for the summer. He uses only natural ingredients to create his works of art.

You can choose your medium: oatmeal, pears, yogurt, blueberry, or applesauce. Your style will hold firm all day long and can be worn both for an afternoon date or an evening at the club.

Gabriel models all his own styles. He would never send you out of his salon with a style he wouldn't wear himself. Here are his top three creations:

As you can see, he is quite confident that you will love your new style and it will have the ladies lining up around the corner.

 

Peek-a-boo, sippy cups, and bathtime

Gabriel discovered a new game two weeks ago. He would sit in your lap all goofy, and then collapse on his front, hiding his face, and then sit back up giggling. We thought he was just tired the first time he did it, but then he did it right after a nap, and then he played this game at a restaurant. He was sitting on my lap and kept peeking at Thomas to see if he was watching. At that point, it was pretty obvious this was a new game. Our therapist was thrilled. He now has the awareness to look to see if we are noticing what he is doing and actively engaging with us, and apparently that is a major milestone. So, yay for Gabriel and playtime. :)

We also bought a new sippy cup for him. Since the standard sippy cups all have either a hard or soft "spout" and we all know the bottle is Enemy #1, I was pretty sure he was never going to engage with a standard sippy cup. And so far, he hasn't. We've tried. So we found this 360° drinker that allows liquid to seep through around the rim of the cup so it's kind of like drinking from an open cup without the drenching that will happen when you tip it too far. The first couple times, he let us put it to his mouth and did swallow some water, but we'll see how long that lasts before he catches on and finds ways to avoid it. This is what he thinks it's for right now:

He also had his first big-boy bath today, complete with bath toys. The hidden message here is that he has finally gained enough muscle tone to sit up for long enough to take a bath! :) And here is a picture that I can certainly use to embarrass him when he's 16:

Ice cream

Today we took Gabriel out for ice cream. Actually, we had the ice cream and he just banged on the table, but he was having fun. I was sitting there thinking about how I am looking forward to the day where he begs Mommy and Daddy to go out for ice cream. Because that would mean that he was eating.

Yesterday we took him out to the Northwest Folklife Festival. We were gone all afternoon so we had to feed him twice while we were out. He has a nice little backpack that the pump and food bag fit into, so it's not like we're carting around loads of machinery. We can actually just put the small backpack in the caddy under the stroller, run the tube up his pants leg and go. Wonder of wonders, he did NOT reflux while we were out. We actually got to come home in the same outfit we left the house in! I was watching a couple of little kids dance around while the adults were doing their Irish folk dancing. This little girl would spin-spin-spin and then fall down on her bottom and get right back up to do it again. I want that to be Gabriel next year.

A few days ago, Mommy and Daddy resolved to be brave and change out the g-tube button on our own for the very first time. The previous two routine changes were done by the doctor with us looking on, but this time, we had to fly solo. It was nerve-wracking -- what if we screwed it up? But, we did manage to get the old one out and the new one in and all seems to be well. And we have now learned new skills.

This is a new skill we will have to keep using for awhile. Gabriel continues to not want to take food by mouth. Or, I should say, swallowing is where the hang-up is. We can get stuff into his mouth, and he LOVES his toothbrush. He'll stick his tongue out and open his mouth for his toothbrush. We don't want to mess up the toothbrush love, so we're keeping it food-free. I am continuing to tube-feed him as much of a blended diet of real food as I can fit into his day, although, per the dietician, he still gets most of his calories from formula. By making the formula as directed on the can  instead of concentrating its calories, we have lessened the reflux a small amount, but I look forward to the day where we can chuck the formula altogether. Gabriel is tolerating yogurt very well, so next step will be milk. If he tolerates milk, then I am taking that information straight to the dietician to see how we can transition from formula ASAP.

Otherwise, Gabriel is doing very well. He's super social -- such a little flirt. And he's sitting up for minutes at a time, although, he still hasn't figured out how to get himself into a sitting position. His favorite thing is still to lay on his back and kick his legs. He uses his feet to push off of walls or other objects to get around. However, he is spending more time on his tummy voluntarily and has managed to push backwards, so we may have crawling in our near future.

It's hard to believe how big this boy is and that it has already been a year!

Baby's first (or is it second?) Pascha

We have now come full circle, liturgically speaking from last year. At the beginning of Holy Week, we found out our little baby was a boy. We were also cautioned that I was showing a small amount of cervical funneling. I was asked to take it easy and to come back for a follow-up ultrasound the next week. About halfway through the week, I figured out that those funny tummy feelings were not hunger, but the baby kicking. He was doing just fine in there. Last year's Pascha, I felt not-great, but didn't realize I was in the beginning stages of labor. Bright Monday, we went for the follow-up ultrasound and discovered I was three centimeters dilated, and those cramps I was feeling were contractions, not GI upset. And so began our five month relationship with Swedish Hospital.

This year is completely different. Instead of realizing that was baby kicking I was feeling, we were holding Gabriel all through the services. He was very much present, and being able to feel him and hold him made last year's memories seem much more distant. This year was probably the easiest year for us to bring him to Holy Week and Pascha services. He's young enough to hang out pretty happily in his carseat or being held by one of us. Since he is g-tube fed, we could quietly feed him during services as needed as well.

Gabriel and Thomas during the Holy Friday procession.

Pascha night, Gabriel was asleep for the Nocturn service, but I put him in his carrier in preparation for the procession, and he started to wake up.

 Come and receive the light!

"Thy Resurrection O Christ our Savior, the angels in heaven sing, enable us on earth, to glorify Thee in purity of heart."

He was very quiet and attentive during the procession and when we came back inside, I put him back in his car carrier where he listened to the service for most of Matins before falling asleep again. At Communion, we woke him up and handed him over to his godfather. He was still pretty groggy, but the priest did manage to give him Communion.

 

Gabriel and James getting ready for Communion. Sleepy baby!

He wound up the night by flirting with the younger members of the choir. Shameless.

We attended Agape Vespers on Pascha afternoon which was a beautiful sunny day. And having a happy baby boy in the middle of it all made it wonderful. Those memories from last year have been replaced.

My new outlook is that Gabriel was so excited at his first Holy Week and Pascha last year, that he decided he had to be born right then. The Paschal season was too good to miss waiting around inside the womb.

Happy First Birthday!

Gabriel just celebrated his first birthday. He's come such a long way from that teeny tiny child covered in tubes and wires; he's developed into a vocal, playful little boy. His official day-before-birthday weight is 18 lbs., 6 oz. That's miles ahead of the 1 lb., 6.9 oz. we started at!

 We had birthday Skype calls with the out of town grandparents and his younger-older cousin (Heidi was supposed to be born first, but Gabriel stole the show), and yesterday we had a family birthday party at the in-town grandparent's house. There was cake and everything, but since he can't have that yet, Gabriel's favorite part was the tissue paper from the presents.

We have come out of our RSV seclusion and we take Gabriel quite a few places now. Church, stores, other people's houses... It's really nice to relax the hyper-vigilance we've been practicing since the fall. He is quite the social butterfly and is very good at flirting with the ladies. He has one of my co-workers completely smitten and is able to distract the entire church choir with his antics. Being so social also means that he's becoming more attached to us. When we started, he was okay being held, but sometimes you really did have to just go put him down and leave him alone to get him to settle. I think this may be a throwback to the NICU where he spent a lot of alone time because the nurses have several charges and he probably had to learn to self-soothe. Now, he gets upset if you put him down to play and don't get down on the floor to play with him. And he likes being held more and will raise his arms when you go to pick him up. He is still a slippery squirmy little dude -- being held is still playtime, not sleepy/quiet time -- but he seems to enjoy it.

Over this past month, I have been feeding him more and more "real" food. Since we are supposed to keep up with the formula, it means feeding him 7x during the day, but I am trying to show the dieticians that he does best on solid food. And he does. Very rarely does he throw it up -- maybe just a small amount once a week if that. The formula still comes up at least once or twice a day, but since we are on an hour long pump cycle and I've added probiotics into his daily regimen, it has decreased in volume. We bought a magic bullet blender so we can start making our own baby food/blends.

Both his therapists are super proud of him. He's doing crawling precursors (i.e. on hands and knees and rocking) and is good at manipulating baby toys which bodes well for his fine motor development. He will have an official review next week. He is also becoming much more vocal and varied with the sounds he makes. Playing with his "throat" sounds -- growling, yelling -- is his new thing. Yeah, those lungs are going to be just fine.

I've saved the best news for last...over the past several days, I've seen an increase in having him voluntarily take the spoon without trickery involved. Today was especially impressive. I would put the spoon to his mouth, gently hold his hands out of the way and say his name and click my tongue to get his attention, and after a little bit, he OPENED HIS MOUTH, LEANED FORWARD AND TOOK FOOD OFF THE SPOON!!!!!!!!!!!!!!!!!!!! Several times!! I am floored. This is awesome. I hope this behavior keeps going!

For the animal trainers and behaviorists out there, here's some other info. When he took food off the spoon he would gag about half the time. So, I started demonstrating what you are supposed to do with food: holding my mouth closed and saying "mmmmmmmmmmmmm" very loudly. Initially, he would take food into his mouth and hold his mouth open, not knowing what to do with it, so this method eventually helped him figure out how to close his mouth and suckle the food back to be swallowed. Now, even though he closes his mouth, he still gags sometimes like he forgot how to deal with the food. So, I am combining the startle response I use with the dog with the "mmmmmmmmmmmm" to get him to combine all the parts of taking food into his mouth and swallowing together. When the dog does something incorrect, I use a loud "uh-uh" to startle her out of the behavior and get her looking back at me. It works quite well. When I say "uh-uh" now, she usually immediately sits and looks at me like "what did I do?" Anyway, I've been doing this every time the baby gags, followed by "mmmmmmmmmmmm", and, believe it or not, it works! He quits gagging and swallows. Ah, the principles of behavior modification in action.

We have our next GI appointment next week and we'll also be meeting the new pediatrician. I will definitely be talking to the dieticians about moving off formula -- maybe moving onto fortified cow's milk? I don't know, but I do know I will be doing more real food with him, even if it means keeping up with the extra feeds to do it. We've also re-applied for Medicaid, and hopefully they'll take our monthly medical expenses into account, otherwise we make just a little bit too much to re-qualify.

Right now Gabriel is napping and so will no doubt be singing along with the choir during tonight's service. Baby's first Holy Week and Pascha! What better way to celebrate Christ's Resurrection than with His little angel miracle baby.

Time to baby proof...

Last week, Gabriel showed us a new trick. Watch closely at 0:51.


Did you see it?

How about now:

Yeah. This boy is well on his way to cruising the apartment.

Plan B+

Well, there is no magic formula. Alimentum showed no change in Gabriel's tendency to reflux. It got to the point where we called the GI doctor weekend pager and were told to put him back on the pump (which means taking the baby food out of the formula mix) and letting it run for an hour per feed. It feels like three steps backwards. We want to get him to eating three meals a day, not moving toward a continuous daytime drip. So, I modified. Again.
The hour pump helps, in that when he does reflux, not as much comes up, but he was still throwing up at almost every feed. So, I went to the store and got the probiotics. We started them last night, and so far today, everything has stayed down. I'm not calling it a success yet. We need to see if the same trend holds over the next few days.
As for the baby food, I've added it to his separate juice feed, and he's holding that down just fine. And since it's "extra" I can conceivably add as much as I want (up to a cup a day) to his diet. I hope to show them that "real" food works better for him than formula. I don't know if that's the case yet, but from everything I've heard about blenderized diets, most babies do much better once you make the switch.
So, here's to plan B+....and hopefully we won't have to move to plan C-.

Trial and Error

Feeding this baby is a series of "lets try this" and then seeing what happens. Our visit to the GI doctor this week has us discontinuing his medications, but trying some other things to get the barfy baby under control. I was quite happy with our interaction with the doctor this time. While I still think she is a bit "diagnostic test" happy at times, she is also really good in her personal interactions with Gabriel. She's always happy to see him and he smiles and giggles at her; and that's important, too.

Anyway, she was happy to hear prune juice was working for us and we put the barium enema on hold for now. We are also discontinuing the Prilosec since we didn't really see a decrease in the frequency of the vomiting. When I brought up blender diets, she was completely on board. They recognize that kids who are on blenderized diets seem to do better, and seem to want to make it the end goal to transition him over to that kind of diet soon. She would like to get him to the point of solids only during the day and supplementing with a formula night drip overnight.

The dietician, however, wants him to stay on mostly formula until he's a year corrected age -- four months down the road -- to make sure he's getting all the vitamins he needs. I explained that with the amount of reflux we're dealing with, I can't keep him on only formula for that much longer because I can't increase the feed volumes from where they are now. We are compromising with a new formula recipe. We are also trialing a completely new formula as well; he's going to try Similac Alimentum starting tonight. During the day, when I make his formula for the whole day, I will substitute 4oz. of water for a 4oz. jar of veggie or fruit baby food. If he tolerates the solids well, we may be able to increase the amounts. I also asked if probiotics would be something he could try, and she recommended a couple different types.

So, the new plan of action is:
-start new formula and add in baby food during the day
-add probiotics if still throwing up a lot
-if probiotics/new formula aren't working, try apple cider vinegar treatment

We have things to try, and that's a good thing since I don't have to feel like we're just standing on the sidelines watching him throw up.

Today started out a little rough in that he threw up over half his breakfast and his noon meal. It makes me nervous about having stopped the Prilosec. Maybe it was helping? But his afternoon and evening meals he held down with no signs of discomfort, so maybe I'm just oversensitive. I also discovered that formula+baby food clogs the pump, so we're back to manually pushing the food in with a syringe. Not a big deal, but it means we can't walk away and do something else while the baby is being fed.

I hope that we find the right combination for him soon! Oh, and he's getting his third tooth. :)

The Baby Advocate -- choosing the right people for the job

Thomas took Gabriel to see a different pediatrician that had a speciality in pulmonology to look into the persistent on-and-off wheeze we noticed. After an allergy test, and a chest x-ray, the doctor determined that Gabriel has "perhiliar peribronchial thickening" which basically means that there is inflammation where the windpipe splits off into the separate lungs, and there is also some associated congestion. It wasn't something that would have been explained by his cough the past week. So, we are in the process of getting all the necessary equipment to nebulize a lung medication once a day to help reduce the inflammation and hopefully, the wheezing. The doctor also noticed that Gabriel's chest/ribcage is a little wider than usual and his lungs are a little hyperinflated meaning that he isn't necessarily able to push all the air out on an exhale. In my personal, non-medical opinion, I'm guessing that we are seeing the effects of ventilator damage. However, the doctor also said that by the time he's a kid running around, he should have no issues. So, it isn't serious, it's just one more thing to deal with right now.

The upside of this appointment is that we will be switching to this pediatrician as Gabriel's primary care doctor. He seems to be knowledgeable about preemies and their uniqueness and doesn't necessarily think of them just as a smaller baby that needs to do a little catching up. He is also able and willing to answer questions. We feel like our current pediatrician doesn't have a good idea of how to handle any preemie questions we have and doesn't like to share an opinion one way or another. He's more of a, "if you want to try that, it's fine" kind of guy, but we need a little more dialogue and direction than that. The new doctor is also a doctor of osteopathy, meaning that he's a full MD, but can also draw on chiropractic hands-on care experience as well as general medicine.

I also called the GI doctor about Gabriel's increasing problem with constipation. Since he is on full formula, it has gotten a lot worse, even with the medication. It seems obvious to me that the formula is the issue, since the more formula we added to his diet the worse it got. First thing they asked is if I'm giving him any juice or extra water. I said no, we didn't know that we could. This is a little frustrating for me since they seem to have focused so much on shoving caloric formula into the baby that they failed to mention that it was as good idea to put other things into him as well. This is my first baby and he takes nothing orally. I need a little help here! Anyway, they also said that any baby that is having a lot of trouble pooping on his own is a real concern and they want to do a barium enema to check for a not-super-common disease called Hirschsprung's Disease where part (or all) of the colon may have had no nerve development and therefore the baby doesn't have the peristaltic waves to push food through the large intestine and out.

Here's where I get a little upset. In my head, it's easy: more formula = constipation. He has never had bowel issues until we started giving formula, and formula is famous for constipating babies. This disease would have been evident somewhere along the way in his hospital stay, I'm sure, since it would have been congenital. And the easy solution is to try giving more juice/water in addition to his diet, especially prune juice, before jumping to a diagnosis that would require yet another radiographic study, yet they never mentioned trying it in any of our appointments. It took calling a nurse to get the recommendation; the doctor just prescribed medication and sent us to radiography. I have found that we have to be super-advocates for this baby given that he has several doctors who don't necessarily talk to each other, and it seems they all want to do x-ray after x-ray. It's like being a high school student with homework from six different classes where every teacher is convinced their assignment is the most important and you should spend several hours per night on their subject. It's overwhelming. If just one doctor wanted to do the occasional x-ray, that would be fine, but several doctors all ordering them for different things adds up very quickly. I find more direction from preemie parent internet groups than I do from doctor visits, much of the time. Oh, and the prune juice did the trick this morning.

Okay, rant mostly over. One more thing to push: from talking to other preemie parents, I really want to try to get Gabriel on a blenderized diet -- i.e. regular food liquified so it can go through the tube. Getting his tummy used to real food would be a good thing, and would likely help his reflux quite a bit. If his GI system is used to real food, that's half the battle. The other half is getting him to feed himself, of course. So, I hope that I can be assertive enough to really push this at our visit on Monday.

7-11

A week ago (yes, I'm behind in updates again), Gabriel turned 11 months old (7 months adjusted). Since we did the barium study and changed his meds, we are still fighting the reflux. It's hard to tell if it's working, because about two days after we started the Prilosec, Gabriel got another little bug. He had a fever and was occasionally throwing up for one day and he has been sounding a little congested since the day before that until now. The coughing aggravates the reflux, so he's still having multiple daily episodes.
We have also made the transition to full formula starting today. I had decreased my pumping to twice a day, then once a day and I have now not pumped for 48 hours. It's both a relief and little scary for me. I have been giving him breastmilk, at least in part, for 11 months, so it's a change for all of us.
Gabriel will get his last Synagis (RSV preventive) shot on Thursday, which means we have almost made it through cold and flu season with just a few little minor bugs. We have also made him an appointment tomorrow to see a pediatrician who has a specialty in lungs so he can listen and help us determine if the persistent wheeze is something we should be more concerned about. I told Thomas not to be surprised if he orders an x-ray, since you can diagnose asthma from an x-ray.
Otherwise, Gabriel is a happy boy. Almost sitting up, but not quite there. Still not super interested in food, but we're working on it. We have taken to demonstrating what to do once the food is in your mouth. He tends to just keep his mouth open and stick out his tongue which eventually triggers the gag reflex. So, we exaggeratedly close our mouths and hum "mmmmmmmmmmm" at him, and it seems to be working.We probably look like idiots. He is still not crawling, which gives us more time to figure out the child-proofing thing, but his PT is overall happy with his progress. We are going to start taking him back out into the world more by the end of April.

Pictures from this month can be found at: http://min.us/mbn32rhjkRNT9d

Irradiating the baby

Well, after much discussion, we did it. We put the baby through an upper GI barium study to try to figure out why his reflux isn't getting better. While the lactulose did do a good job of unconstipating the baby, which also did help his spitting up, he is still having several spitting up episodes a day and sometimes it's so bad he can't breathe for a minute. The Zantac doesn't seem to be helping much.

This is how and upper GI barium study goes:
Don't feed the baby for 4 hours prior to the test. Then he gets dressed in a little hospital gown and is strapped to a backboard with his legs down and his arms up over his head like superman. He's strapped down good and tight because this board is designed to roll... Barium is injected through his g-tube (because we all know he doesn't take much orally) and they proceed to take digital xrays while rolling him onto his side, back on his back, and once almost completely onto his tummy. I think this kid is going to have a deep-seated fear of roller coasters after this.

We heard back from the doctor yesterday. His GI tract and stomach appear normal, so while it's good to hear he's normal, it still doesn't explain barfy baby boy. We have also upgraded his reflux drug to Prilosec. He'll start today, and it takes 3-5 days for full effect. I just want to be able to feed him in a reasonable time frame and be able to do things like put him in his car seat 10 minutes later without a traumatic barf. Putting him on the pump helps, so we are continuing to do that as well.

This is what Gabriel has to say about it all:

High Risk Infant Clinic

Since Gabriel was born so early, he is eligible for Swedish Hospital's high risk infant clinic run by two of the neonatologists. They check in with you at the adjusted ages of 6-months, 1-year, 2-years, and 3-years to make sure that you're child is progressing well and that you are getting whatever extra help you may need. Gabriel saw one of the neonatologists that had been working with us since his ventilator days. She wasn't there when he was first born (apparently they move around to different hospitals), but she was around for most of his stay. She was very happy to see him! In general, Gabriel seems to be doing very well. He's a little behind in some motor development, so we will be sticking with the physical therapy, and of course he is way behind in the feeding department, but we knew that too.

The only other issue that came up is that he may have some lingering lung issues. We've been noticing him intermittently quietly wheezing for awhile, and when she listened to his lungs, she could hear it too. She recommended that we see our pediatrician about it and perhaps put him on an inhalent drug for a little while. We'll try to get an appointment, not with our regular pediatrician, but with one we saw in Tacoma who turned out to have a speciality in pulmonology. We have yet to find a regular pediatrician we are completely happy with. Gabriel is such an individual case that the questions we have don't always fall into the routine parent questions or even the routine preemie parent questions.

Anyway, back to the neonatologist who does understand our child. One thing she said which was very interesting is that since the preemie brain develops outside its natural environment [the uterus], it forms connections in different ways. What this means for us is that we need to pay special attention to the way Gabriel processes things and learns. He may not form associations and learn the way a child that developed to term would do. This doesn't mean that he's impaired, but it means that he may need to have information and processes presented to him in different ways than we would think. Apparently, this shows up about the time kids enter school since school is such a structured system that tries to treat every kid the same way. It will be interesting to see how he grows and develops.

Teeth!

Just a quick note to say that Gabriel has had a visit from the tooth fairy! In my opinion, if she's the one who takes the teeth away when they fall out, she must be the one that magics them into being in the first place, thereby creating eternal job security. Anyway, the bottom two teeth are very noticeable this week and he seems to be in no discomfort at the moment.

Barfy Baby Boy

We had our GI appointment this past Monday. One of our major concerns is that Gabriel's spitting up has recurred with a vengeance. We are routinely cleaning up half of each feed as much as 20 minutes after feeding him. It's so weird, this artificial feeding regimen he's on. The dieticians can calculate how many calories he *should* have based on his age and weight, but that's not necessarily what he needs. Even feeding much less than recommended and him barfing so much this past week or two, he still made fantastic gains in the weight and length department. Gabriel is actually ON the weight/length charts now with his actual age! He's in the 2nd percentile for a 10-month old, but considering he's not supposed to be a 10-month old, that's phenomenal. The actual numbers are 16.5 lbs, and 26.5".

But we still have to get this reflux thing under control. The doctor took a quick abdominal x-ray and saw a very constipated baby. Given that the alimentary canal is essentially a tube through the body, if you fill up the bottom end of the "plumbing", things going in the top end won't make it through and will come back out the way they went in. At least, that's the Reader's Digest non-scientific way of saying it. So, off to the drugstore we went for baby laxative and Gabriel now has a standing prescription for lactulose to keep things regular. He is also on Zantac, the mildest reflux drug. The goal is to have him tolerate his high calorie milk during the day like he does at night. She also wants to do a more in-depth x-ray study of his upper GI tract involving injecting barium into his g-tube and taking timed snapshots of his small intestines as the barium moves through to ensure that there is no twisting or blockage of the intestines. We have this scheduled, but we are not sure about subjecting the baby to the radiation just yet.

However, since Monday, reflux has increased. Cleaning out the baby and reflux drug non-withstanding. At the doctor's request, I put him back on high calorie milk during the day, even though we haven't had great luck with it in the past. Her reasoning is that if he can tolerate it at night, there is no reason why he can't tolerate it during the day.  But, I hope I found a light at the end of the tunnel. Today, when I fed him, I was distracted and fed him very slowly for the first two-thirds of the meal. Then, I got my act together and fed the last 50mL at the rate we've been working at for awhile (7 mL/min). Sure enough, 50mL came right back up the pipe. So, I wondered....are we just feeding him too fast? The last dietician we saw told us that bolus feeding should take no more that 15-20 minutes, so we adjusted our feeding rate accordingly. But the dietician he saw Monday made the suggestion to actually feed him slower or even put him on the pump during the day. So, I tried that. His pump is portable and comes with a little backpack, so I put it all together and set the rate to give him his full meal over the course of 45 minutes. And it worked. No coughing, retching, gasping or any other signs of possible reflux. Of course, he was napping through most of it, but that hasn't been stopping him from vomiting before. The beauty of the pump is that it's hands free for us, and we can sit him in his high chair and work with his spoon feeding while his tummy slowly fills up with food via the pump. I've been so resistant to using the pump during the day, because I kind of hate the whole g-tube/food pump aspect of his life, that it never really occurred to me to do things this way.

The other part of being able to fill up his tummy while on high chair spoon time is that he might start making the connection between food in his mouth and getting full, even though he's not eating enough to make that happen naturally. The dietician at this past visit made a very good point that we hadn't considered: we can make him hungry, but hunger doesn't create feeding skills. So, putting him on a hunger trial would just make him cranky since he doesn't have the necessary skills to successfully swallow enough food to be not hungry. He doesn't "get" hunger, which we knew, but we needed someone to put a different spin on it for us. So, we have some good suggestions to work with, and I hope that the pump will be a good daytime option for us. Because, if we can get him to hold down food and hold down more volume than we're currently feeding, we might be able to get rid of the night-time pump altogether. The only thing holding us back is that he can't hold down sufficient volume in a daily bolus feed.

10 months old (6 months adjusted) update

Okay, I'm a week late in writing this, but better late than never. Gabriel has made quite a bit of progress in the past month. He's a rolling over machine, and loves to kick his feet, pull his socks off, and blow raspberries. He is actively reaching for toys and has figured out how to bounce himself to the moon in his bouncy chair. He's almost outgrown the bouncy chair. I don't know what we're going to do!

I have been trying to make high chair time "fun time" so that he learns to like the chair, even though he's still not too into this whole spoon feeding thing. He bangs his plastic toys around, throws spoons at the dog and loves to kick the bottom of the tray. In terms of food, once we get the food in his mouth, he is pretty unsure of what to do with it, but he's not actively rejecting things like he was with the bottle. He does eventually swallow and doesn't drool or spit out a great deal. You have to sneak the spoon in while he's chewing on something else or smiling, if he sees you coming, he'll close his mouth. We're still on what is called non-nutritive feeding, meaning that we're not concerned with how much he's taking, we're just trying to get him used to the idea. His SLP suggested a couple things. One is what she called a "baby net" which is basically a fine mesh net attached to a pacifier handle that you can put pieces of solid food into and as the baby chews on the food in the net, some of it squishes out. I didn't like the net idea because of the impossibility of getting it really clean, so I got the silicone holder version that's basically a giant pacifier nipple with holes. So far, he has put every part of it in his mouth EXCEPT the feeding end. We also got him a sippy cup just to play with for now, and he enjoys banging that around too. We have completely discontinued the bottle; I washed them and put them away.

We were doing pretty well with keeping milk down, but over the past week, he's been refluxing a lot more. We have our monthly GI appointment today, so hopefully we'll get some direction on how to help him. Even though he's spitting up quite a bit, he has still gained 1.5 lbs. in the past month and is now at 16.5 lbs. I haven't measured his length, but given the fact that he's outgrown his 6-month sized pants, I'm going to say he's over 26 inches now.

So far, all of us have dodged the winter cold viruses. Gabriel has two more shots in his RSV series (one coming up this week and the other the beginning of April) and then we will be officially considered out of RSV season. We are looking forward to being able to take him to church again. We do take him out and about on limited excursions -- out to dinner at an uncrowded restaurant or on walks to the library, but it will be nice to not have to worry quite as much. I am cutting way back on pumping breastmilk, but want to make sure he gets at least a little bit through March because the antibodies in the milk will still boost his immune system. I plan to be off the pump by sometime in April, so at that point it will be formula and solid food only. He seems to be doing okay with the slow transition to more and more formula.

I'll leave you with a happy, smiley photo:

Additional photos for this past month can be found at http://miri116.minus.com/mtpwSHZQIToeQ

Making friends with Mr. Spoon

Gabriel had a therapy appointment yesterday, and we are all in agreement that he is showing no improvement with the bottle. Therefore, we are moving on, at least partially. Spoon feeding seems to be going well so far. Sometimes he'll take as much as 1/2 Tbsp, which, according to the therapist, is about as much as you can expect from any kid just starting solids. He also really enjoys chewing on the spoon. This morning, he kept shoving it in his mouth so far, he would gag. At least until I took it away from him. So, anyway, we have a new plan. He can have spoon feeding OR bottle time before his milk gavage. Basically, he needs to have an oral experience paired with the feeling of his tummy getting full. The hardest part of all of this, and it will be a long process, will be teaching him about eating when hungry. Since all his food is given on a schedule, artificially, he doesn't understand hunger. I'm not sure he even feels hunger. But for now, we'll just try to let him know that stuff in your mouth = tummy getting full.

UPDATE: Just spoke to the feeding therapist, and we are going to give him a two week trial with NO bottle, only spoon feeding and gavage feeding. We'll see if we can't break this negative association cycle.

He's still gaining weight well. At about 15.5 lbs., it's getting hard for me to carry him any distance in the carseat. I'm resorting to Baby Bjorn or stroller when possible. Not that we take many trips, but occasionally we get out of the house. At his dietician appointment last week, she said something quite strange: he is only the 0.2% for weight. I asked if she was looking at adjusted age, and she said she never looks at adjusted age. She wants all the preemies to catch up to their peers on the weight charts. Considering Gabriel was 4 MONTHS early, he's never going to catch up, so I think her expectations are a little unrealistic. But since he is gaining weight appropriately and we were able to figure out what his limits were in terms of what he can keep down in a session, she is okay with us just doing what we're doing. We have an ideal goal in terms of daily calories/volume, and I will keep pushing him, but I'm going to stick with what he can tolerate.

Some answers on radiation

The radiation officer at Multicare, Eric Hooper, called me back yesterday, and provided me with some more helpful information than the crazy numbers I'd extrapolated myself from the numbers given by the radiology technician. He said that the estimated amount of radiation for an upper-GI swallow study for a baby would be around 3 millisieverts. To give some comparison, the natural background radiation for most people in the United States is about 3 millisieverts per year, and a chest X-ray is about 0.1 millisieverts. So, this would be the equivalent of about 30 chest x-rays, and, if this were his only procedure this year, would effectively double his radiation exposure.

He said that trying to figure out the long-term effects or risks of a 3 mSv exposure was difficult as there aren't many studies out there of the effects of radiation. Most of what we know on the topic comes from survivors of Hiroshima and Nagasaki, and the doses received by those people started in the 1000 mSv range.

I asked a couple more questions, including: is there any way to measure the extra risk he'd endure because he's 5 months old? Not really. Is there any way to measure the extra risk of having his thyroid in the direct line of fire? Also no.

He said that when doctors are getting ready to order tests that involve radiation, they need to think about whether the risk of the test outweighs the risk of the condition that the patient has. Also, they need to think about whether the test would yield useful information, and to get the title "useful", there had to be good course of action that could be determined from the information.

In this case, I don't think we have those conditions met. When I asked the speech therapist what we could do with this swallow that we can't do with trial and error, the answer was long-winded, but didn't actually come up with anything better than trial and error as a way of finding a better feeding set up.

So, it was a nice talk we had, I learned things, but it also made me a little suspicious -- medical professionals keep saying "minimal" when it comes to radiation exposure and risk, but really, they don't have a good sense of what that means. I also read somewhere else that if you give two dentists the same set of dental x-rays, only about 50 percent of the time will they agree about the cavities . . . which also makes me wonder if they ought to be doing dental x-rays.

Sigh. I hope I'm not turning in to a helicopter parent.

Applesauce

By Thomas Eric -- Dad

Today Gabriel had his first experience with applesauce. The idea behind introducing solids is to get the child comfortable with it. An old trick is to put it on the baby's hands and then wait for him to put his hands in his mouth. Gabriel was fine fingerpainting, but he wasn't tasting, so then I took my hand and put some applesauce on it. He thought chewing on my fingers was a great idea.... and went straight for my one clean finger. And then attempted to take off my wedding ring.

But later he did take some applesauce from the spoon. He seemed to like it and didn't do the "Hey what is this stuff?" look like he did with the rice cereal last week.

We've got another month of playing with food ahead of us, and then at six months' corrected age, we start looking at this from the perspective of making him work and get serious calories this way.

Also, today, it occurred to me that I when I called up friends and family, I no longer had to preface the call with "I am calling about nothing in particular; everything's fine." Back during our antepartum and NICU time, I had to do that to keep them from thinking that something really serious had just happened. Now I can just say, "Hi."

Radiation and babies

This post is by Gabriel's dear old Dad, Eric. One of the recommendations of our speech therapist was to get an upper-GI barium swallow study done, which is a series of X-rays performed while the baby is swallowing. I was concerned about the radiation dose of such a procedure, and wasn't able to get an answer I could understand. This letter I wrote to the head of the imaging department at Tacoma General Hospital explains the process if you're interested in learning more...

Jim Sapienza
Imaging Administrator
Mail Stop 315C3IAD
315 Martin Luther King Way
Tacoma, WA 98405

Dear Mr. Sapienza:

I am writing you to give some comments and suggestions about the experience of a parent trying to get information about radiation doses that a child might receive while getting x-ray procedures performed. A month ago, we scheduled an upper GI barium swallow study at Tacoma General for our 8 ½ month-old son, but I wanted to get information about how much radiation he would receive in such a procedure, or to put it bluntly, how much the child would be zapped? I was not able to find the information.

To give you a little background, our son was born 17 weeks premature at Swedish Hospital in Seattle, and got a number of x-rays performed there (and I’m not interested in increasing his dose if it can be avoided). He has grown out of almost all of his preemie issues except for eating. He does not drink enough from his bottle and must be supplemented through a gastric tube. Our son’s speech therapist recommended a barium swallow study. We scheduled this.

A call to the GI clinic at Mary Bridge eventually got me transferred to Michael Smith, who was quite helpful in explaining how the procedure was done. He explained that he would shield his eyes and genitals, try to dodge his spine, but his thyroid would get a direct hit. I wanted to know how many millisieverts or millirems he would receive from the procedure.

To tell you a little bit about my own experience on the topic, I am a bookkeeper, and one of the employers I serve is a lawyer who represents workers at the Hanford Nuclear Reservation. This means that I don’t know a great deal about radiation, but I do know that we receive about 2.5 mSv of background radiation per year, and that the annual federal limit for additional radiation on a job is 10 millirem, or 0.1 mSv. I also know that the typical chest x-ray gives us about 0.1 mSv of radiation. I was hoping for an estimate that would compare to these sorts of levels.

Michael provided me with radiation doses from the last five patients to receive upper GI barium swallow studies. The numbers were:

81.7 cGy cm² over 1 minute 51 seconds
177 cGy cm², 3:43
168.8 cGy cm², 1:52
206.1 cGy cm², 0:49
73.9 cGy cm², 3:22

Michael wasn’t able to tell me the age or size range of the patients receiving these doses, and he also wasn’t able to explain how the per-centimeter-squared thing worked. I know what a centigray is, but converting these numbers to something that compares to other experiences that a person might have with radiation was difficult. A friend of my boss’ explained that you needed to divide the number of centigrays by the number of square centimeters in the target area to get the correct dose. If you assumed that the target area would be 25 square centimeters, you’d end up with a dose between 32 and 83 mSv, which seemed awfully high. I doubted that I had the numbers correct, but that was about as far as I could get in finding an explanation that made sense.

I brought it up with the speech therapist who originally wanted the test performed, who assured me that the procedure involved no more radiation than a dental x-ray, but I knew that wasn’t close to true -- dental x-rays are a few snapshots that don’t hit the thyroid, while a swallow study is an animation, or a whole lot of snapshots that do hit the thyroid.

Unable to find an answer to my original question -- how much will the child be zapped -- I canceled the appointment. I don’t mean to be “that parent” who overreacts when a pre-school doesn’t use organic food in the meals, or who refuses the polio vaccine because he believes it will cause autism, but in this case, objecting does make sense. Radiation will increase cancer risk, and I didn’t want to increase my son’s dose, especially when I do not have any idea how much he would receive. A stock answer that medical professionals provide when asked about radiation is that it’s a “minimal dose,” which to me sounds like someone trying to assure me my house has “minimal flooding.”

So let me conclude by again speaking well of Michael Smith’s helpfulness, but advising you that parents need access to better information about radiation doses than is currently available. I am still open to the idea of performing this procedure which may provide information that improves my son’s eating ability, but I need accurate and comparable information about the expected radiation dose before I allow it.

I would appreciate hearing your thoughts on the topic.

Sincerely,



Eric Ruthford

9 months old

Today Gabriel is 9 months old. He seems quite happy and pleased with himself. We are on day three of no spit ups (hooray!), but he's still working on gaining back the 1/2 pound he lost while sick. I may get brave and increase either his food volume or calories soon, but right now it's so nice to have feeding not be akin to a ticking time bomb. I'm sure Gabriel enjoys not having his food come back up the pipe, too. He's currently about 14 lbs. 10oz. and 26" long.

Here he is working on his sitting up muscles. Jisa is waiting for the toy (out of frame) to magically fly through the air. For this month's photos you can go to http://min.us/mTRJUvxl4Qa0S

Unexpected Bright Side

Gabriel and I got sick last weekend. At least, I assume he and I had the same thing: stomach bug. Ick. Anyway, the result was that we took him off food for a day and fed him just Pedialyte and then slowly worked him back onto food. First plain breastmilk, slowly increasing the volumes, then breastmilk fortified to 22 calories, and finally breastmilk fortified to 24 calories. I guess I need to go back a week, though, and tell you that his spit-up episodes were starting to get really bad again. Half the feed would come back up at almost every meal. I was about to lower his meal volume when he got sick. What we discovered is that he can tolerate about 130mL volume per feed (he was previously at 140mL) and that he does okay on 22-calorie, but 24-calorie milk resulted in spit-up/vomit at most meals. So, we have settled onto 130mL of 22-calorie milk and we have had no significant spit-up for two days now. It's such a nice change. The dietician won't be super happy with me because she wants him on 24-calorie milk with a bigger volume than he's getting, but my thinking is that keeping more volume down on a lower calorie diet is better than being on a higher calorie diet and routinely losing half of it.

It also seems to have uncovered another problem. Maybe we're seeing this now because he's not losing half his milk right away, but he's started throwing up 30-60 minutes after eating. Not all the time, but we at least will generally hear a raspy "there's something in my throat" cough around that time frame. We are thinking he may have a mild reflux issue.We just didn't notice before because of the massive spit-ups. He has a GI appointment next week, so we'll definitely bring that up.

He has also started spoon feeding this week! Well, it's actually more like finger painting, but given that the bottle is still a trial and tribulation, it's nice to be doing something different with food. We just give him a little bit of cereal to play with and then put a little in his mouth with the spoon if he happens to have an open mouth. Hopefully over the next month or so he'll get the idea.

If you're on Facebook, Thomas took a bunch of photos of Gabriel's introduction to solid food with a wonky digital camera. It resulted in some interesting photo effects, but you'll still get the idea.