A Hundred Days in May!

Yes, folks, we actually hit that milestone today.  Woo hoo!  For those of you not following this thread of Hallie's story, this means that she has had a 100 spew-free days this year.  100 out of 148 days doesn't seem to bad to us, particularly in comparison to last year, when we only hit this milestone at the very end of August, or the year before, when we never even came close to this milestone (back in 2007, I think we had a grand total of 16 days without vomit).  Anyway, we're thrilled and we hope that our saga of decreasing paper towel usage and emergency middle of the night bed stripping and trips to the washing machine will provide some hope to parents (and kids) who are still in the midst of vomit hell.  It can get better.  

Hallie and Lea had a great day all around.  Hallie has really been into trying to draw her own hand.  This started on Monday when I traced her hand on construction paper as part of her mealtime distraction.  She thought that was wonderful and insisted that I do this many many times in many many colors.  On  Tuesday, she grabbed some paper and crayons and brought them over to me during playtime for a repeat performance of hand drawing (she was not all that thrilled when I tried to turn a brown hand into a turkey in true preschool instructor form, but that's okay since we're a long way off from Thanksgiving still).  Then, when I had to stop drawing with her to take care of Lea, she grabbed a crayon and attempted to trace her own hand.  Today we tried to teach her how to go around her fingers with the crayon and she did a pretty good job of it.  

Hallie also had a grand time painting and then finger painting during Early Intervention OT.  She really loves to paint and must have spent at least ten minutes of uninterrupted attention on this today.  She was particularly fond of us painting her hands so that she could make lots of handprints on the paper and very quickly figured out how to paint her own hands.  Ultimately, she was a big mess, but a happy one, and I do have to remember that we need another IKEA stepstool so that she can wash her hands at the kitchen sink since going up our steps to the bathroom would have tracked paint everywhere.  Hallie still cannot climb the stairs holding onto just a hand or a banister--she needs both--and crawling would have left lots of handprints on the risers of the steps that would have been a pain to clean up (even with washable paints).

One of the things that was really interesting to me is that Hallie ate VERY well after finger painting.  She downed an entire hot dog (without skin), a bunch of cheese, quite a bit of watermelon, some prunes, and a couple of ounces of milk within a half hour or so and with no protest.  She still needed her usual TV distraction but I wonder if giving her some sensory input that stimulated her tactile senses helped her eat more effectively.  I've got to try this again to see if this is a pattern.  If so, there will be a lot more finger painting around here on a regular basis.

Hallie also did great at private OT today.  Our regular OT was off on her honeymoon, but having an unfamiliar person fill in did not phase Hallie in the least.  She went into the room, took off her shoes, got on the mat, and proceeded to do her swinging-on-her-tummy-while-picking-up-beanbag-animals-and-tossing-them-into-the-barrel routine with great attention.  She also quickly mastered a new obstacle course (crawl through a tunnel, pick up a puzzle piece, climb over a tumbleform, place puzzle piece in the puzzle, and then repeat another dozen times) and even pretty happily attended to a table-top activity (not her strong point, in the least) for about three minutes after that.  The second table-top activity (stringing beads on pipe cleaners) was a bit of a hard sell for her, though.  She was tired, and though she had no trouble with the actual task since she really is using both of her hands bilaterally much more easily these days, she was done with OT by that stage.  It seems like she has the capacity to follow structures for 45 minutes, with some breaks and change-ups, but fatigues after this.  I am not sure if this is because all of her therapies have classically been 45 minutes long or whether it's because she's two, or whether it's because, given her generally low tone, her body gets tired being 'on' all the time.  Anyway, it will be interesting to see how she adjusts to preschool, which is obviously longer than 45 minutes, in a few weeks from now.

Hallie is also beginning to further expand her speech.  Today, as usual (despite injunctions placed on this practice), she climbed up onto the pack and play and grabbed a picture down from the bookshelf that it abuts.  She brought it over to me and said:  "Picture of Lea!"  Of course, it was a picture of Hallie back in the NICU, but pretty much any baby picture these days is a picture of Lea.  She totally loves her little sister and is excited when she sees her or any representation that might be her.  And, if Lea is not with her (for example, when we go off to therapy without Lea), she gets very concerned.  She looks over at the empty carseat next to her and says, "Lea!  Lea!  Where'd she go!"  And, when she wakes up in the morning, the first person she greets these days is Lea.  She'll often climb over me to get to her sister and wave at her and say "Hi, Lea, Hi!" or "Lea, wake up!" (which is usually not what I want Lea to do and definitely not what Lea wants to do at that moment).

Lea, meanwhile, was her super cute self, as usual. She's talking a ton right now and sounds pretty much like a little kitten meowing when she does. I think she's just exploring the different sounds that she can make with her voice, and that is very cool to see (and listen to).  

Lea had a very nice day and was chill throughout all of it, until 10:30pm, when she just wanted Mommy to come downstairs and feed and hold her.  The pattern around here is that Sharon takes Hallie up to bed somewhere between nine and ten pm and spends about an hour upstairs.  Lea's internal alarm seems to go off somewhere around ten and eleven and, after that, she really needs Sharon to comfort her.

And, speaking of Sharon, one of the projects that she worked on back at her old job just won an AIA (American Institute of Architecture) award.  I am very proud of her.

Finally, Sharon called the hippotherapy center down by her family (who live on the Jersey Shore) and hopefully we'll hear back from them soon.  I think that hippotherapy will do a world of good for Hallie and I can't wait to see her astride a horse.

GI Update

We saw the GI today for the first time since December.

First good piece of news is that Hallie hasn't lost too much weight. We knew she's slimmed down a little, but were afraid that her newly-restricted diet of goat cheese and pears (if only I could turn this into a salad with crunchy fried prosciutto, walnuts, and a nice orange-raspberry vinaigrette, it wouldn't be too bad of a diet, really) had led to a major drop in weight. People kept telling us that she looked 'great' and 'huge', but you know how us micropreemie moms are---we have been calculating calories and running spreadsheets all week about this. Anyway, Hallie weighed in at 11.82 kilos, or 25 lbs. 15 ounces, so the most she lost is 2 or 3 ounces, and that's not too bad. She's still at the 50th percentile for weight.

She did shrink though! Not really...it never ceases to amaze me how wildly different heights and head circumferences are when we get different people doing the measurements. Doing them on a screaming kid (you'd have thought it was an RSV shot, the way our kiddo yelled) doesn't help any, either. I can't wait until next year, when she's three, and they can get her height while standing. Given the number of times our girl has been pinned down for all sorts of procedures, can you really blame her for screaming?

Second piece of good news is that the GI fellow didn't really recognize Hallie. She has hair now, and more importantly, she looks like a toddler and acts like one, too. (That's both good and bad, obviously) Anyway, Hallie behaved really well for Dr. J and he was quite impressed by her. Nothing new to us, but it's nice to hear.

Third piece of good news: We don't need to go back for six whole months! Woo-hoo. The GIs agree that a lot of Hallie's tummy issues are allergic responses, so if we see progress on that front, we can start reducing the Reglan and Prilosec. We'll take it slow, obviously. But we've already gotten rid of the miralax, and honestly, we see no negative change where pooping is concerned. We have added a new probiotic (Lactobacillus GG, which is sold under the brand name Culturelle) and this has perhaps added some help to her GI system, but so has getting rid of some probable allergens.

Anyway, not a terrible appointment all around, even if we did have to wait for the GI (we saw the fellow very quickly, but then had to hang out and see his supervisor) for a while. We were in and out in two hours, though, which all things considered isn't too bad. And since the weather here is cold and rainy today, it's not like we missed much park playtime.

On the park front: Hallie is not only more independent in the playground, but also is more interactive. She had a nice game of catch with an almost-three-year-old neighbor yesterday, and stole a ball from a 14 month old (in her defense, she did try to engage him in a game of catch, too) and wanted desperately to partake in a fast-paced soccer game in which some 8 to 10 year olds were engaged (at least she wanted to steal their soccer ball; she has a fetish for them---I can't wait until we can sign her up for a soccer league). I hope the weather improves some soon because Hallie really does relish her playground time!

(Not such a) Big Gulp

I know that I'm posting twice in one day and that this is actually a fairly unusual thing. But as time goes along, I like to try to segregate out the medical from the non-medical posts. It's nice to have a post or two that are not related to diagnoses, therapies, doctors' visits, and the like (though it's harder to segregate out the vomiting).

Anyway, yesterday started out with a bang...or at least a shot or two. Hallie had what will probably end up being her last RSV shot (synagis), for which she was belatedly approved (at least the doctors who do the insurance approval were smart enough to approve it, even if late: doing a risk analysis on a 23 weeker for the cost of the synagis (around 3000 dollars a shot at this point) versus the cost of hospitalization (much more, obviously, especially if you add in the likely oxygen and even possibly CPAP and/or ventilation) is a no brainer. So we plucked Hallie rudely from her bed (our futon in the 'futon room', which is distinct from our glorious yet underutilized bed in our bedroom) and raced off to get her pumped up with synagis. She was not impressed. To say the least.

She did, however, put on more weight so we were impressed. She 's now a robust 25 lbs. 9 ounces, and still at 50% on the actual charts. She is also taller than 33 inches (informal measuring at home) and this accounts for her extended reach and also places her at at least 50% in height, actual.

Then it was off to do the long-awaited (long dreaded) swallow study at CHOP. We had to be there at 10:15 and for once were on time. This was our first mistake. Radiology had an emergency and was running 45 minutes late. So they did not take her until at least 11:15 (perhaps later; I just know that Sesame Street was over, which was also not a good thing. Everything was copasetic until the closing bars of Elmo's World and went steadily downstream from there). By the time we got into the room and did the baseline x-ray (which Hallie hated since it reminded her of the ng tube upper GI of seven months ago...or at least made her feel claustrophobic), Hallie was near hysterical. She was starving (her last bottle was at 11 the night before), grumpy (11 am is naptime especially when she is up early), and now they wanted her to be strapped into a chair, sandwiched between x-ray plates and to eat barium-laced food. No way, Jose. So suffice it to say the solids we tried were thrown clear across the room (that girl can throw) and just about every time we tried to get her to eat or drink she melted down in a way that is not typical of Hallie. We did, finally, get two glugs of unthickened barium (mmmm....) and two swallows of baby food into her. That was it. It took over a half hour to do this, and that half hour felt eight times as long. Anyway, turns out she is not aspirating on thins from the straw, that she is doing fine on baby food, and that we can thicken at our discretion. The excellent SLP who has been doing these studies (and did the FEES back in January) thinks that it's because of the resolution (i.e., control) of Hallie's reflux. Anyway, since we are better-safe-than-sorry proactive mommies, we intend to keep thickening the bottle at night and nap time because her suck is MUCH stronger then and she gulps a bit, and we'll back off from the rest a little. And it's good to know that when she drinks out of someone else's cup, she'll be okay. Unless of course it contains cow's milk, which is another story. But at least we'll know that she's vomiting due to allergy and not aspiration.

On the vomiting note: Hallie has had three more, non-serial, vomit free days in March. I think we're now up to a total of 8 vomit free days in March, and I believe 25 for the year. I want to try to keep a log of this. I know that sounds insane, but there you have it: I am a counting freak.

If you've made it through this post (awake), scroll down for a much more fun post with cute pictures below:

Baaaaaah, Humbug, or Hallie's Got our Goat

Things have been getting better and better in terms of Hallie's intake and Hallie's general lack of refund since Saturday. Her mood has even gotten better (and this is a kid who seemed happy even while she was retching and gagging and vomiting multiple times a day. This is saying something).

What changed? We're not sure, but this is what we are doing and it seems (for now) to be working and hopefully it's not some sort of fluke.

1. Food change. Instead of either Nutren, Jr with Fiber or Pediasure with Fiber, we now have her on a super charged goat milk formula. Sharon felt that part of the constipation issue might have been related to the Simply Thick, and without the Simply Thick, we'd be sunk in terms of her eating orally because we strongly believe (we have a bit of data, and we'll leave it at that) that she is still aspirating on thin liquids. We needed a lot of Simply Thick to thicken the pediasure or nutren, jr. and we felt that even unthickened, she had begun to slow down on stooling on the super rich 30 calorie formulas. Given that she did well on the mix of breast milk with Enfamil AR powder and Karo Syrup that we used to have her on, I did a bit of research on other milks and found a lot of data that suggested that the proteins in Goat Milk are the ones most similar to human breast milk and that they tend to be easier for people in general to process. Given our desperate situation, it seemed worth a try. We started mixing Goat Milk and the Enfamil AR powder (we are also adding in vitamins to compensate for the lower B-s and especially Folic Acid in Goat Milk, relative to the complete nutrition formulas) with a bit of Karo syrup and less in the way of Simply Thick. Hallie loves the taste of it and, in contrast to the other formulas, is also taking more of this during meals (from a straw cup) than she ever did the Pediasure or the Nutren Jr. We estimate it at 27 kcal/ounce and that she is now taking (for the first time in a long time) more than 20 ounces of this a day, on top of her purees (appx 4 ounces per meal, with a goal of an average of at least 100 calories per meal, three times a day).

2. Meds might have kicked in. We are splitting 30 mg prilosec into two doses, mixed with applesauce (morning and night). We are keeping up with the Reglan (1 ml 4 times a day).

3. Hallie is on a firm schedule that spaces her meals, bottles, and naps more effectively. She is napping upwards of 3 hours per day (two naps) and sleeping from 10pm to 7am (roughly). She seems to thrive on this schedule and we are aiming for complete consistency to enhance her happiness and our own. Her last bottle is around 12am and it is still a sleep-feed but we are hoping that we might, over time, increase her consumption during the day and be able to discontinue this. In any event, it sure as heck beats the 3am bottle of yore.

Stooling is now regular, more of the consistency that one has while on breast milk (instead of pebbles, which is what we had been getting some of last week, and sometimes hard formed cakes). She is no longer retching and her gassiness has subsided. She seems happier.

So we are pretty happy. The only vomiting we have seen has been mechanically (mommy) induced: we had one bottle that was too thin (hence our data about aspiration), and one meal that came too quickly on the heels of a bottle (hence our very precise scheduling). Otherwise, no retching, two small wet burps and a whole lot less laundry. And she sounds clear as a bell and has no congestion whatsoever.

Did I mention that we are happy?

Very belated Hallowe'en pics to follow later on tonight...

If a Picture Could Tell A Thousand Words...

This would be the one that summed it all up.

This amazing shot (yes...it is a picture of Hallie in mid-projectile vomit) was captured by our good friend Vanessa a few months ago. Sadly, it just about sums up our life on a daily (who are we kidding...multiple times a day) basis.

This week has been a pretty bad one. Hallie did have her ear tubes placed, is probably teething (she's always teething), and ran a bit of a fever after getting three vaccines during her belated 15 month well-baby (???) check up, during which we discovered that she has not gained much weight at all in the past three weeks (like 2 ounces total, for a grand total of 9640 grams, or 21 lbs. 5 ounces. We know that, after two 300 to 400 calorie days, she has lost at least some of this weight). Anyway, our ped. put Hallie on reglan, which used to scare us but which looks far better than the alternative (a surgical procedure called the Nissen Fundoplication that essentially places a knot in the baby's esophagous that will a. shorten her already too short GI tract and make reflux worse and b. prevent her from vomiting, even when she really needs to do this to clear a bug or something poisonous from her system). Alas, the reglan is not helping Hallie empty her stomach (maybe because she's not eating?) yet and is not having any of its magical anti-emetic effects yet, either. At least it is not having any negative neurological side effects (which is why we were reluctant to place Hallie on it in the first place).

Anyway, after a bunch of projectile vomiting and virtually no food intake, we decided to bring Hallie into the ER yet again. I was hopeful that Hallie had a hairball---yes, you heard it right, a hairball: after all, the kid loves carpet fuzz more than any other food group---but alas, no obstruction (we had to subject the kid to an NG tube to do an upper GI series. Hallie was in serious emotional and physical pain over this particular aspect of our ER visit). At least we've ruled this out.

In the end, what we're left with is a diagnosis of reflux and delayed gastric emptying. We're not sure what caused the flare up and why Hallie isn't able to process food and poop as well as she had been able to in the past. Perhaps it's the antibiotics she had been on in August and September; maybe it's teething (she is veritable drool factory right now); maybe it's the change in formula from pediasure to nutren, jr. to nutren jr. with fiber (and now to pediasure with fiber). Maybe, like in the NICU, she finds it hard to process 30 calorie/ounce food. Perhaps the simply thick is simply constipating.

We've decided to focus once more on diet in the hopes of managing this beast: We're adding probiotics and we're trying Hallie on a mixture of goat's milk (supposedly easier to digest and closer to breast milk than other forms of milk) and Enfamil AR powder (to add some calories and more nutrients), and less in the way of Simply Thick. We're trying to remain optimistic, but that is getting pretty hard to do.

Meanwhile, I bought a lot more laundry detergent, because if there is one constant in our life, that's it.

Thinking Outside the Box: When Solving Turns into Managing

According to Hallie's Feeding Clinic team at St. Joseph's, the only real problem that Hallie has is reflux---her laryngomalacia, her paralyzed vocal cord, even her intermittent colds would be minor nuisances without the aggravation that is being caused to her by reflux. She'd be eating normally, they think, if it were not for the evil reflux. Without reflux, we might not even be seeing our pulmonologist still; after all, Hallie's lungs have sounded amazingly clear and looked great in spite of the fact that they were not quite functional when she was born and they complicated her treatment during those critical first weeks of her life. We tend to agree with the sage folks at St. Joe's. The other night, Sharon and I were talking about this and other stuff and we realized that, up until this point, we've been handling the reflux just like we'd handle any other problem in Hallie's (or for that matter, our own) life: let's do lots of research (it's kind of sweet in a dorky way that we each decide upon the search terms independently, do the same searches without knowing it, and then compare notes and realized that YET again, we've crossed paths on the World Wide Web without knowing it). After the research phase, we go to the implementation phase, believing that, if only we light upon the correct formula, we'll manage to lick this thing once and for all. Then, when the solution fails, we take whatever empirical evidence we've gleaned from the experience back to the research table and begin again. That's pretty much how we handle most things in our lives, and by and large this has worked for Hallie, too. Back in the NICU when she was not acting herself, we had the entire medical team supporting our efforts (well, mostly supporting them) and this is how we ended up pushing them to figure out that an exponentially higher dose of dexamethasone had been prescribed to Hallie to get her off of the vent and onto CPAP. That instance alone corroborated our sense that our approach was correct and that if we can't figure out a solution to any problem, it's because we haven't looked hard enough, thought about it the right way, etcetera etcetera.

Well, we've just realized that we need to apply this tactic to our methodology, too: our search for a solution to this reflux problem is not proving possible. We've now decided to shift gears into management instead of looking for a cure. There is no one or two or three things that we can do to make the reflux just go away once and for all. Instead, we need to figure out how to alleviate the pain that it causes Hallie, maximize her comfort, and minimize our own distress at the fact that, like just about every other micropreemie I know, Hallie does not conform to some magic timetable out there that says that things will happen at a certain moment. Reflux will not just disappear at age 1 year adjusted just because the books and tables and pediatricians tell us so.

Honestly, I think we both feel a bit relieved. There will be days of better and worse eating. There will be days of more or less vomit. We need to take our cues from Hallie and if she is having a hard time with dairy products, we need to ease off of those for a while. And so on and so on.

This doesn't mean giving up; not in the least. We have learned a lot along the way in our search for the cure to Hallie's reflux. We know that congestion is one of the worst things for her reflux, and this means that we need to avoid ear infections and the such. On top of the no brainers like washing hands and making everyone we know wash theirs, too, and keeping Hallie away from sick kids and the places that they might play, placing ear tubes will (hopefully) help. And our magic-making pediatrician proved himself dreamy once again: Thursday morning (the morning after we had been in the office with Hallie at 7pm), Sharon got a call from his office saying that we had an appointment at one of the CHOP satellite specialty care offices for 10 am on Friday with the ENT. We were not thrilled at the wait at the King of Prussia office, but who can complain when we were done with both the consult and an audiology test (Hallie's hearing is basically fine; she did not cooperate for the whole test but she obviously hears in most registers and there was good inner ear activity until she decided to pull out the probes and stick them in her mouth) by 1pm? Anyway, Hallie's anaesthesia consult is on Tuesday (the one doctor free weekday in a 13 day period) and the actual procedure is scheduled for the 29th. So hopefully this will help minimize some of the sinus/eustacian tube congestion issues that Hallie has been having (note: these in fact may be congenital and not prematurity-related---most of Sharon's family is predisposed to yucky ear infections, sinus infections, drainage problems etc).

We have also learned that the thickening of Hallie's feeds helps enormously, and I recommend to any parent out there dealing with a refluxing and retching baby to consider trying thickening the baby's feeds.

And we've also learned that constipation is to be avoided at all costs. We finally managed a breakthrough (so to speak) on this front (or bottom) on Friday and Hallie's eating picked up a lot thereafter and she seemed a whole lot less uncomfortable.

Anyway, we're not giving up entirely, but just shifting how we think about things. And we still hope that some day the reflux improves, at least, and that Hallie enjoys eating more. Our feeding team doctor has given us some hope that this might happen; in her experience, she has yet to work with a neurotypical child who has not at some point been able to be taught to eat conventionally. This might take work, and it's definitely not as easy as "just give your kid cheerios/chicken nuggets/pizza and s/he'll eat!" It's just a matter of getting Hallie to a point where she can be taught that food is not her enemy and doesn't have to hurt. This may have to wait until she's older and better able to express what does and does not hurt (right now we guess) but hopefully some day we'll be able to put the reflux in a box, and not have it rule our lives, even if we still have to respect it and the role that it plays in Hallie's life.

Meanwhile, we need to be content that Hallie is ingesting her purees orally, that she can be convinced to drink her bottle, even if she still mostly sleep-eats it, that she has learned to sip on the honey bear straw and can drink a little thickened formula or juice that way, and that for us, solid foods = gerber puffs and not any of the foods that "all children" eat. We've learned a lot along this journey and one of the most important things we've learned is that eating is a complex and difficult task that should not be taken for granted. Hallie is sort of on the middle of the spectrum: our pediatrician thinks that she is the hardest feeder he's seen; our feeding clinic doctor thinks that she's one of the easiest cases she's dealt with in a while. It's all about perspective, and we're trying not to lose sight of that either. We're better off than some, worse off than others, and most importantly, we are where we are and we need to work with what we have.

That said, after her big Friday afternoon blowout diaper, Hallie started to feel a whole lot better. Not only did she have a good eating day on Saturday (I think she ate 4 ounces of yogurt, at least 12 ounces of other purees (quite possibly more than this, even), a few gerber puffs, and about 20 ounces of nutren with fibre). She was also a lot more playful. "Playful" for Hallie=messy for mommies. Yes: we do appear to live in a toystore. And yes, it's a very disorganized one. Here's a typical debris field scene:



Hallie doesn't seem to mind swimming with her toys:


And even though 'playing' still mostly involves throwing toys around the room (admittedly, sometimes chasing them around hockey-puck style, which is very fun to watch), Hallie has begun to learn to use some of her toys in more conventional manners. For instance, she loves to get out her little ball and play catch with one or both of us. And she has begun to put two blocks together (albeit inconsistently; these are still mostly toys for throwing) and attempts to do her puzzles (she knows which piece goes where in some cases, but not how they get into the appointed cut out slots). Mostly, she loves to play with her Fisher Price peek a block giraffe and roll around gumball machine and especially with her baby grand piano. Sharon and I have yet to figure out the pattern that turns on particular songs, but Hallie has accomplished this goal quite nicely. She has one or two favorite tunes and she consistently gets them to play by working the correct sequence of buttons and knobs and keys. This makes her very happy. I leave you with my favorite recent image of Hallie. The smile on her face says it all: