Feeding Therapy: the rest of the week

Day 2 went much like day 1, only I was watching and Jamie Sue was feeding. He did eat a little better for me, so that gave my ego a bit of a boost. Day 3 & 4 started the actual therapy.
Since Noah is soooo good at drinking his milk and sooooo bad at eating his food, they didn't actually give him any food or drink the whole rest of the week (don't worry, I fed him later). I think that's pretty much how they start everybody, but they don't want to add in food until he's comfortable with all of the oral exercises so it could be a while (although we did hear a rumor that it might be Monday). Since Noah really likes to pretend to eat, and getting rewarded to do something you really like is double the fun, he was super into the therapy sessions. The other "new" kids were having major issues going back into the therapy room with a stranger, where as Noah was trying to sneak in between sessions. The hardest part of the week is the lack of boundaries. The area is very open and Noah doesn't understand that he can't go anywhere his legs will take him. I'm often dragging him screaming from under the reception desk or heading him off as he tries to escape into the therapy rooms or follow a friendly outpatient home. There is a nice play area, but it's loud and full of bigger kids so Noah only wants to play there first thing in the morning or last thing in the afternoon when it's cleared out. We go outside on the swings when it's nice or ride down the halls in a wagon or a push car, but there are only so many times you can do those things before they get old, and then the rest of the day is spend in therapy or lying in the hallway screaming. On Friday the behavioral psychologist mentioned another play area at the main hospital entrance that she thinks is less busy, so we'll have to check that out next week. Hopefully we can find something, because there's only so much screaming I can take until I let him follow a friendly outpatient home.

Feeding Therapy Day #1 (home baselines)

Today was our first day of feeding therapy. The goal was to see how Noah eats for me, to have something to compare to when we're done. We had 3 therapy sessions. The rules were simple - I had to present each food to Noah but he didn't have to eat it. When I was done I was to call for the therapist (who was watching through closed circuit tv in another room).
Session #1
the foods: pureed carrots, baby applesauce, a sippy cup with 2 oz Pediasure w/duocal
what happened: Noah refused the purees and vomited his stomach contents when I managed to get a bite of carrots in his mouth (normally I wouldn't let it get to that, but the therapist needed to know what would happen). He devoured the Pediasure and screamed for more (which he didn't get).
Session #2
the foods: pureed something and something else (I had ceased to care what I was feeding at this point - it's not like he was going to eat it), veggie puffs, a straw sqeezey cup with 2 oz Pediasure with duocal
what happened: Noah refused the purees and I didn't push it. He threw the veggie puffs on the floor. He let me sqeeze the 2 oz of Pediasure into his mouth and begged for more.
Session #3
the foods: 2 more misc. purees, some popcorn without the kernals (who knew such a thing existed?), 2 oz of Pediasure in the straw cup
what happened: see session #2
When we weren't in the feeding room, I was doing my best to keep track of my newly walking toddler in a non-child proofed waiting area. Fortunately he was too busy screaming in hunger to get into too much. I'm told by the other moms that they get used to the schedule after a few days and find things to do other than just get into trouble. Starting Thursday he'll get 4 therapy sessions, so even if he just eats the Pediasure he won't starve.
Tomorrow is therapy baselines which means Jamie Sue (the therapist) will be feeding and I'll be watching on the tv screen. My biggest fear about tomorrow is that he'll eat everything for her and they'll tell me I don't need feeding therapy I need parenting classes and give me a t-shirt that says "I don't know how to feed my baby" in big letters on the front. Ok, perhaps it's not my biggest fear. But I'd feel awfully stupid if that happened. One day down, 39ish to go.

The Bad Mommy Award Goes to....

Me! It's been a long few weeks getting Noah through his surgery & activation and all the things that go along with that. Add to it a billion appointments since we'll be at feeding therapy for the next 8 weeks and I'm physically and mentally drained. My husband, being the wonderful husband that he is, got Noah up and dressed and plopped him in front of a video so that I could sleep late. When he left for work I was curled up on the couch reading blogs and Noah was still watching his movies (keep reading, it gets worse). At about 9:15 Noah started fussing, so I of course assumed he wanted a different movie. 9:45: Noah's fussing again and stops watching the movie to go play with his toys. His game of choice this morning: "Bring mommy things to eat and laugh when she pretends to eat the silly things that I bring." Want a sock for breakfast? How about the corner gaurd from the fireplace? A blue crayon looks good too. This is a pretty typical Noah game, except for the fact that each time he went to fetch my newest snack he would sit on the floor and fuss for a minute - that is not normal Noah. After about the 4th or 5th item I started to wonder what was going on. Hmmmm.... It's not naptime, so he's probably not tired. We remembered to put the childproof cover on his CI processor so his volume's not too high (I could've written a bad mommy post about that yesterday). Maybe he's refluxing? Nope, I don't hear any milk coming up. Wait a minute. Milk! A few minutes later Noah was happily playing again, with a full tummy, quite forgiving of the fact that mommy had forgotten to feed him. He's currently trying to built a tower so that he can climb it and fall off onto the fireplace without the corner gaurds. Maybe I should go....

The Torture Begins

On Tuesday morning we will be taking our sleeping boy and putting him in the car at 6:30 in the morning to driving to Richmond to see our AV therapist. What kind of crazy therapist makes you get up that early for a session, you ask? She's not crazy, she's wonderful. You see, Noah and I are booked solid for the next 8 weeks from 9-4:30, so 7:30 am is the only time I have available for learning to listen and speak. Why, you ask? We will soon be day patients at Children's Hospital. Our goal? Learning to eat. As a fun way to start that goal, on Tuesday morning our new feeding therapist will lock Noah and I in a room with all sorts of foods that I know he won't be interested in. She said she doesn't expect him to eat them, she just wants to find out how he goes about not eating them. Does he gag? Vomit? Push the food away? Scream and cry? Yes, to all. Why would I put my small child under such diress? Because if I don't we're getting a g-tube. We don't want a g-tube, so instead we're going to feeding boot camp. Every day Noah will have 4 feeding sessions with our feeding therapist and a feeding technician (I'll let you know what this is next week). Twice a week he'll be weighed, and if he doesn't gain appropriately there'll be a public flogging (they're kidding about that, right?). Once a week we'll meet with our feeding team (therapists, nutritionist, psychologist, etc.), and after 8 weeks they'll let us loose in the world a little fatter (just Noah, not me) and with some new feeding skills. We hope.

Guilt

A certain neonatologist wrote a post about guilt on his blog. I do feel guilty about Noah's early birth, NICU stay, and subsequent disabilities. Is this a rational feeling? No. My educated, rational brain realizes that I did everything I was supposed to during my pregnancy and researched exstensively about things that came up in the NICU in order to make educated decisions about his care. The guilt has lessened over time. I would say I'm more my old self than I used to be in the last few months, wheras for the first year or so I was living in a bit of a daze, dealing with what came up that day because that was all I had the strength to do. Why am I writing about this? I made it a general rule not to respond to comments from certain individuals that get under my skin because I've seen it not work well for other preemie mamas. But one such individual said something that has me fuming inside and I'm choosing the cowards option... mention it on my own blog rather than comment. Maybe she'll find me and attack me here. Perhaps I'll have to join the blogger protection program and change my name and say that I have a son named Haon who's a 42 weeker, but nonetheless here's my comment. I would rather feel guilty about my son's early birth & NICU stay than to think of him as a "damaged fetus that nature 'intended' to be miscarried". I've read posts from the mothers who don't feel guilt and frankly many of them have shown themselves to be bitter and angry and unsatisfied with the hand they were dealt in comments on other topics . If in order to get rid of the guilt I have to become like that, I'd rather be guilty. So there.

One in a Million

I used to think I had bad luck. Over time I've just realized that I had "rare luck". If I had a dime for every time someone said to me "that just doesn't happen" I'd be rich. Today our audiologist said that to me while attempting to trouble shoot our 2 day old $7000 cochlear implant processor that wouldn't turn on. He kept asking us about "significant electrical events". That is, "Did Noah get struck by lightning and you forgot to mention it?". When he finally fixed the problem he said "I don't get it, that just doesn't happen." Yeah, maybe not to you buddy. But if it doesn't happen to anybody else, it's bound to happen to me. Here are some more "It just doesn't happen" experiences.

Oral surgeon: "Don't worry, wisdom teeth extraction is a very safe surgery. Those scary complications are one in a million chances." (Yeah. That's why I ate pureed foods for 6 months and still can't feel the tip of my tongue 10 years later.)

State Police Officer: "Wow, you mean the engine just exploded? Like with fire and everything?" (Yep. Fire and everything.)

Car insurance agent: "A tree? On your car? That doesn't happen in real life." (No? Then what's that big wooden thing on top of my car?)

IV nurse: "We're sending your blood to the Mayo Clinic. They want to study it because HELLP doesn't happen this early in pregnancy." (Good. Tell my liver to start working again so I can go back to being as healthy pregnant woman.)

Neonatologist: "Babies just don't survive this kind of thing." (Ummm... Sorry.)

Doctor: "What are the chances that he would have a severely disabling birth defect on top of the effects of the prematurity?" (Hmmm... Apparently 100% in this case.)

Yeah, so stuff happens to me. Overall with having a 24 weeker I'd say going against the odds is a good thing. Just don't stand too close to me in a lightning storm.

Zoo Trip #2

We've kind of gradually been ignoring the lockdown rules the last few weeks. We're not taking Noah into crowded rooms full of sick people or anything, but we have been known to be seen in public. Now that we're past the surgery and his lungs did so well, its hard to convince ourselves that he won't be ok. Since it was such a nice weekend we decided to go to the zoo with Uncle Barry and Aunt Mindy. Noah's been to a zoo before when we were visiting friends in the Philly area but he'd never been to The Zoo before. His favorite animals were by far the Uncle Barry-Bear and the Aunt Mindy-Gator, but he was kind of into the golden lion tamarins too. And he of course agreed with Mommy that the snaked necked turtles are the coolest zoo attraction ever. He wasn't too into many of the big animals, but it's just as well since those were the busiest attractions. I loved bringing Noah to a place that had so many great memories for me as a kid. I'm really hoping that he grows up to be an animal lover like his Mommy. He loves our cats, but I'm not sure whether he understands that they're alive or just thinks they're really cool electronic toys. I guess time will tell.

Tribute to Dr. L

Yesterday we had an appointment with Dr. L, Noah's neurologist. We met Dr. L. for the first time when Noah was admitted to the PICU after 4 days home from the NICU. Noah was having seizures and was in respiratory distress. Fun, huh? The first time I talked with Dr. L I thought there was something REALLY wrong with Noah's brain because he was being so nice to us. You know, kind of like how doctors try to be when they're going to break the news gently? Turns out Noah's brain is fine and Dr. L's just a really nice guy. The thing I always liked best about Dr. L is that he always looked at Noah and his test results, not at the statistics for 24 weekers. He thought that Noah's seizures were due to his body not handling the raging UTI infection that the NICU accidentally sent us home with (oops!) and not by some traumatic preemie brain injury that was yet undiscovered. Well, Noah's been seizure free since January 2006 and off of his trileptal since June 2006 so we're now saying goodbye to Dr. L. Noah is at a higher risk for future seizures simply because he's had them in the past, but not at a super high risk. We can always come back if we need to. But as much as we love you Dr. L, we hope we never ever see you again.

The Next American Idol?

Noah's favorite toys are often musical in nature. He loved his drums and his piano. But more than anything else, he loves to sing. We noticed this for the first time one night when Brian was putting Noah to bed. We were singing him his goodnight song and he joined us. Sure, he just sang "aaaa" instead of the words, but it was music to our ears! Noah has 3 favorite songs - "Baa Baa Black Sheep", "Walking Walking" and The "ABC" song. Tonight during dinner Noah started singing "uh uh uh uh uh uh uh" It might not sound like much, but if you add in the correct rhythm and an occasional correct pitch like Noah did it's most certainly an excellent rendition of the ABCs. During speech therapy "ing ing, ing ing" invariably means that Noah is walking somewhere. And "ba ba ba ba" is more than just babble when sung to the tune of "Baa Baa Black Sheep". So, is this normal? Should I be skipping the speech therapy and springing for voice lessons? We always assumed that based on the genetics our kids would have some musical ability, but having my deaf preemie sing before he talks is kind of throwing me for a loop.

Surprise!

I don't know if I'm just clueless, but I'm always surprised by each new milestone that Noah hits. I remember the day that our OT said he was about ready to sit up. I told my husband that evening and we laughed and laughed. He couldn't see or hear, only rolled over sporadically, and had such high tone in his shoulders that when he tried to bring his hands to midline they barely touched. Silly OT! But sure enough, within a week Noah was prop sitting like a pro. Then a few months later my baby who could barely push up took off across the room crawling. I was a little more prepared for walking since both the OT and the developmental doctor predicted it, but even so when he took off the first time I did a double take. Was that MY baby that just walked across the room? Yesterday we took Noah to great-grandma's house for a visit. He loves her more than just about anybody and she returns the affection so it's always a fun trip. She praises him and he eats it up so we tend to see new things when we're there. He decided that he'd had enough of the babyish "pulling up to get to standing" thing and started standing up from the middle of the floor. Not clumsily, but successfully as if he'd been doing it for months. Maybe that's what he's been working on at night in his crib instead of sleeping! We were told his motor skills would regress for a few weeks after surgery, but apparently Noah had other ideas.