Happy Hallie-Days

Well, we've made it through the week! Yay! This was no mean feat, since it involved the ENT, eye doctor, a weight check, the dentist, a portrait sitting, the GI, and a childbirth class. Whew!

The weight check went fairly well--unfortunately, our nanny forgets whether the scale read 29 lbs 5 ounces or 29 lbs .5 ounces (the decimal point is, alas, a pretty big deal around here, as it is the medical world generally. We are not ones to forget that the good old decimal point got Hallie o'd-ed on steroids (dexamethasone) back in the NICU). Anyway, the key is that she hasn't lost weight and, if the GI's scale is well-correlated to the pediatrician's scale, she does, indeed, weigh 29 lbs. 5 ounces, which is super. She is also super tall--36 inches. And hence at the 50th percentile for height and weight and completely well-proportioned. This is fine by us.

The dental visit, though, presented more in the way of trauma. The clinic itself was great and the resident was totally gentle with Hallie. Hallie did cry when they checked her teeth--it's traumatic to have anything done to her mouth, for all the obvious reasons, plus we have good reason to believe that her teeth cause her quite a bit of pain but, like most micropreemies, she grins, bears it, and doesn't quite let on about how much it effects her. The damage to her mouth, though, is extensive and the Penn dental folks think that she'll need three teeth capped and other reconstructive work. Unlike evil dentist number 1 (see a few posts earlier for this one), they spent a bunch of time with us (and not just two minutes between other patients) and took a complete medical history. The first dentist hardly glanced at all the paperwork I filled out; the resident, in contrast, went through everything I wrote, asked for more details orally, and made sure she knew what the deal was, which specialists Hallie sees, and how to get in touch with them. She felt (and her attending confirmed) that general anesthesia was the only way to handle Hallie's teeth; it will let them do a full set of x-rays to ascertain the full extent of the damage; perform a really thorough cleaning; and cause her the least trauma. It will also protect her airway (dentist number one never asked about Hallie's history of aspiration and laryngomalacia and vocal cord paralysis; these dentists felt that all of those things contraindicated even conscious sedation for Hallie since it's not clear she'd be able to protect her airway in this context). While we are in the OR--which will be at CHOP, not a satellite surgical clinic, with the very skilled CHOP anesthesiologists handling the tough stuff, we may end up doing other stuff. Dental will consult with ENT to see if they want to re-do the ear tubes or deal with the granulation tissue issue and GI will probably order another scope just to make sure there is no EE. The downside of all of this is that we will have to wait until early February to get all of this done, and no doubt, given our luck and Murphy's Law, the Great Expectation will arrive just in time to make this very very complicated.

Speaking of the Great Expectation, the little nameless one stayed put so that Sharon and I could attend our Childbirth Class today; last time, the multiple class we were slated to take happened two days after the girls were born and obviously was a moot point by then. So we were very relieved to make it to this date (indeed, my deeply superstitious tendencies prevented me from even registering for this class until we hit 28 weeks). The class taught us a few breathing exercises (sadly more appropriate for me than for Sharon since I am the one more likely to pass out from hyperventilation) and laboring techniques (I think Sharon will find these handy to do when the residents are busy reviving me). Now we're just waiting for the next ultrasound (on New Year's Eve) to see how big our kiddo is and whether she is head down, head up, or lying sideways. Whatever her position, Sharon is pretty sure she's leaving about zero room for her intestines and bladder right now. But, honestly, Sharon looks great--she is running small (though our OB assures us the baby is fine) and is only beginning to reach that truly, wonderfully uncomfortable stage of the pregnancy.

And speaking of wonderful, check out the holiday pictures of Hallie:





Amazingly enough, we actually took these on the heels of the dental visit (separated only by a short detour through New Jersey when we kept getting lost en route to Babies-R-Us). Even though the picture session kind of coincided with Hallie's new nap time, our kiddo was in great spirits (and the photographer did a great job). And so, somehow, more or less gracefully, we managed to take pictures, make up cards, and actually mail them out a few days before both Chanukah and Christmas this year.

Equally astounding is the fact that one of Hallie's Chanukah presents, which I ordered on E-bay last Tuesday night in the wee small hours of the night, made it to our house by Friday afternoon. We decided to give it to her a bit early since its a not-easily-wrapped item: a 2 inch thick tumbling mat. Hal has been practicing her forward and backward rolls on it ever since I unpacked it and, hands down, it's one of her favorite things in the universe right now.

And speaking of favorite things (or at least topics) and being on a roll, our current vomit-free count is now 167 and counting. We are really hopeful that 170 is within reach!

On Eating and Its Consequences

That does sound a bit like an 18th-century tome, doesn't it, except that the 18th-century tract's title would have been followed by a colon and the following:

"a discourse concerning the first-hand exploration of the evidence of digestion, or lack thereof, and the malfortunate outcomes for the teeth of a young girl, witnessed at first hand by an explorer through the world of Hallie, recently yet tentatively among those who chews her food and will perhaps thereby avoid the moral and other consequences of sleeping with her bottle."

Yeah, that about sums it up. Gotta love those early modern titles: while long-winded they capture the essence of the thing and let the reader know precisely what's in those moldy binders before he or she mistakenly grabs the book off the shelf thinking, perhaps, that it's some excellent mystery.

Except for, of course, it is: no one really knows where this consequences-of-prematurity thing ends.

OK--where to start, now that you know the subject?

Well, I guess I'll begin with the family meeting/conference call that happened at the ped's office on Wednesday. It really wasn't quite the whole team. It was me, Sharon, and Ami (Hallie's intrepid nanny who is as invested in this as we are), our ped (who is great---and I'm not just saying this because he knows we blog), and our GI fellow, who called into the ped's office. Not able to make it was Allergy (which was too bad) and we didn't invite pulmo (though we may be seeing some exercise-induced asthma issues with Hal, but I'll raise that at our appointment in two weeks) and eyes and ENT were not really relevant. I would have liked Allergy's opinion about a repeat scope, but we'll have to get that later on. Right now, our chief goal is to rule out some other stuff so that we can figure out to what Hallie is really allergic and what just makes her tummy uncomfortable for other reasons.

The good news from that meeting is that we can take serious weight loss off the table. Hallie weighed in at 29 lbs (1320 grams), which is only a half ounce gain since early-mid September, but, given that she's been sick and, given that this still puts her at above 50% on the weight curve for her actual age, we're less concerned that we were a week ago about this. She has also gotten a bunch taller---we did not measure her length (she gets that done at GI next week), but we know from the way her pants are fitting (as in, she doesn't drag three inches on the floor) that she's getting pretty tall. This makes her seem skinnier.

So, with major nutritional concerns off the table for now, we can talk about the really serious stuff. In my mind, the biggest question is why her motility is so delayed and what we can do about this. It is typical for a person to void about 90% of their stomach's content in an hour, and we know from the last motility scan that Hallie had about an 80% residual at an hour (for informational purposes, this is formally called a milk scan---where they strap you down on a table after you drink some barium-laced formula and then they chart how quickly your tummy empties; the scan also picks up big reflux events, but the gold standard for reflux is a pH probe, which we've never had done and do not ever want to have done). We know from empirical evidence (undigested food coming up three or even four hours later) that Hallie's motility is still impaired. Sadly, a bag or two of time stamped vomit will not suffice for the GI as 'evidence', so we will have to try to do another scan to confirm this. This shall not be any fun, given that Hallie doesn't easily get strapped to anything these days (more on this later) and we need to find a radiologist willing to experiment with the as-yet unpatented 'seated milk scan.' We can definitely keep Hallie in a chair for an hour and distract her properly, but lying back on a cold steel table is something that elicits memories of a. RSV shots b. ng tubes and upper GIs and c. quite possibly some NICU trauma in our girl. We firmly believe that toddlers have memories (and Hallie's seems prodigious--she remembers people and associations; she knows about twenty books and more episodes of Sesame Street---can even remember what letter of the day goes with what episodes---and Signing Time by heart and we are not looking to traumatize our kiddo further. More on this later, too). Anyway, so we'll try to do the scan and see if it works, and if it doesn't, we are not going to push it.

One reason we are doing this is to see if Hallie will qualify for an FDA waiver to use cisapride, a very good motility drug that has very bad cardiac consequences for a small subset of people who have Long QT syndrome (a cardiac arrhythmia). She would have to do a cardiac workup (EKGs etc) but it could very well be worth it if this drugs helps empty her stomach more quickly. She is very severely volume limited and very gassy and we believe very uncomfortable and has developed some negative associations with food because of this.

We will also treat her empirically for bacterial overgrowth in case that is part of the problem. This involves flagyl, a heavy duty antibiotic, and we're a bit concerned that Hallie will not take to it well (she has a history of not tolerating antibiotics) but we'll try.

And we're still trying to get someone to answer whether we can safely add digestive enzymes to her food just to see whether that makes a difference. I need to rephrase this into a simple 'yes or no' question and try to get the GI to come out for or against them next time I see them (on the 19th).

If we rule out motility, or figure out how better to treat it, we may be able to isolate what sets Hallie off food-wise more effectively. I suspect she'll be okay on fruits and that more protein rich foods will still be more of a problem, but at least we'll have more variety in her diet.

Speaking of diet, the other thing we talked about with the ped and GI was how to get Hallie to eat more willingly. Here I need to explain: Hallie VERY willingly eats 'safe' purees until she is full (often gets less in than she needs to gain, but not to maintain her weight). The problem is that she has never made the leap to self-feeding or dealing well with texture. We know that she can chew---she does this with her sticks and fries---but it is a lot of work and she tires quickly. We think this is because she has poor muscle tone in her mouth (no doubt about this one; this has also impacted speech production and as her speech gets stronger, so does her chewing, and vice versa). We also think her swallow is a bit off--she gulps with every bite to clear her mouth and it cannot be fun to do that. We are not sure if the gulping is related to some sort of inflammation but we know that it's not structural and that her paralyzed vocal cord is not the culprit (though it probably doesn't help things much).

The not self-feeding and not eating textured foods is one of the big things that keeps her from being a 'typical' toddler. She is eating at the stage of a 9-10 month old, not a 30 month old. And she requires a lot of help from us and eating becomes a full time job both for whoever feeds her and for Hallie herself. Toddlers don't like to sit still, so this reinforces the negative associations that Hallie has with food and fuels her eating aversions. Not to mention that it makes it hard for us to ever leave the house.

Our GI rather unhelpfully suggested to us (YET AGAIN) that we tube Hallie. Uh, no, we don't think so. Number one: who the heck tubes a kid who is at the 50th percentile for weight and demonstrates that she can gain well? Number two: tubes are massively contraindicated for DGE, and we are not doing a GJ tube. Number three: she is not delayed on most of her milestones, is making fabulous speech gains right now (she has numerous two to four word phrases at this point and hundreds of individual words and signs). So, no, not unless you can convince us that there is some reason other than convenience to do this. This is major surgery and most likely will gain us very little and lose us much in the process.

We explained all this to the doctors, though I still don't think they completely comprehended that Hallie is not classically averse to food---as long as she likes it, or she knows it's not making her sick, she willingly tries food (once she begins to realize that she doesn't feel well on a particular food, she will reject it. We see this as self-preservation and not as a feeding aversion). She will play with her food, as a couple of the pictures below amply demonstrate). And her vomiting is less frequently at meal time than after a meal---when she is stuffed and feeling nauseous. So some of the classic approaches to feeding therapy won't work for Hal. The question is: what will?

Our ped wants us to play around with letting her feed herself and control things more. We've been doing that for the past couple of days, and, while Hallie's made great advances in terms of texture, this process means that she is eating very little food (and we're having trouble letting go of calorie counting) and the process itself is very messy.

First, the texture advances: Hallie actually ate about a third of a whole pear yesterday. I cut some slices up for her into 'stick' shapes (and peeled them) and she ate four or five quite happily and then signed and called out for "more." We were thrilled and surprised since, other than requesting potato sticks or french fries, Hallie has never actually asked for more of anything (other than her bottle, which is mostly for comfort). So I cut up some more and she ate most of those too. She ate more at lunch. And then at dinner she ate about 15 fries (50 calories, plus some more for oil).

Hallie also expressed a lot of interest in feeding herself purees, but can't quite manage a spoon terribly effectively yet. She begins by dipping her spoon into the puree (either prunes--homemade--or jarred baby food pears and apples) and then gets frustrated and figures out that it is easier to eat this (and her cheese/yogurt mix) by hand. She thinks it's a blast, but she gets a whole lot more on herself than in herself.

Here are two of our favorite shots from the 'be your food' series:



Note to self: prunes does not make a very effective hair gel.

So, we're going to continue to let Hallie control things more and play around with solid textures and do a weight check in about ten days to see what she's lost. We are hoping that more eating of solids will yield more capacity to eat solids quickly (a big issue for Hallie is how slow it goes; she hates to be in the high chair for too long and who can blame her?). If we can get her to add more solid goat cheese (goat mozzarella) to her diet, we'll be able to get her caloric intake a bit higher too. Ditto with french fries. Our goal is a whole serving (which is still only 110 calories, plus oil).

It's taking a huge amount of self-control on our part not to run and feed her a jar or ten of food to make up for things, but as long as she's not dehydrated or losing weight too quickly, we've got to keep trying. And if, in the end, we can't do this ourselves, we will need some intensive feeding support (but it has to be the right kind, which is not going to be easy to find).

Speaking of professionals that one doesn't trust, behold the pediatric dentist. With some trepidation and foreboding, we took Hallie to the dentist for the first time yesterday (about a year late, even if we account for her prematurity). The guy we saw is reputed by a lot of parents to be the best pediatric dentist in town, but we beg to differ. First, the waiting room at 8am on a Saturday was chock full of people. We were a bit surprised to see so many parents (fewer kids, because the places discourages parents from coming back into the treatment area) at such an early hour. We waited our turn and finally went back to the dental zone. The dental hygienist was nice enough, but Hallie wasn't thrilled (she has lots of issues around people touching her mouth. Gee, with repeated intubations over the first 9.5 weeks of her life, a lot of scopes and OG tubes, do you think she's got a reason for this?

You will note in the photo below that only one of us is smiling:



The dentist then came into the room and had a look-see. He spent about five minutes with Hallie (and we suspect even less with her medical form, which was filled out by me, and required much more than the standard one line or two provided for details). He noted severe decay, including nerve involvement, on the molars (one required capping) and pretty extensive enamel decay on a few other teeth (I'm not sure how many because he was really not specific. There were kids in six or seven dental stations, one dentist, a few hygienists, and no real time to spend per anyone child. Truth is, it felt like a factory with a couple of toddler- and child-friendly murals and games in the waiting room). His verdict: give her a whiff of nitrous oxide, strap her to a 'papoose board' (he did not appreciate my analogy of said device to a strait jacket), cap one tooth, bond a few others, send her home. When we expressed concern about the emotional trauma, and how this might adversely impact her already fragile mouth-related stuff, he said 'she's young; she won't remember it.' (Reminds me of all those idiots who treated premature neonates without any pain killers because they thought neonates don't experience pain. Not true at all). As I said, Hallie remembers everything and is a very bright little girl. So we asked about alternatives. His reply: dental surgery with intubation and general anesthesia. Now we might go this route, but not with him, and we need to explore the middle of this spectrum: what about versed? what about other forms of 'twilight sleep'-ish drugs (like the ones Sharon got for the IVF and FET transfers; she really has no memory of these events at all). His answer: no go.

Our answer: no go to him.

So, if you are reading this and are in the Philly area and have a recommendation for a GENTLE pediatric dentist, please email me at abbyschrad at earthlink DOT net. We will be talking/calling around to other dentists, and particularly those who specialize in special needs kids and doing it pronto. We want to help Hallie and making her mouth stop hurting so much will probably go far in this direction (getting her to brush also will, we hope...Amy can do this, we cannot. Amy must train Hallie to brush for us. Not sure how this will go down).

Anyway, that was all a little disappointing. It's only after the fact that we figure out what kinds of questions we need to ask before we schedule appointments with new types of specialists. But better to do this, even if we have to pay out of pocket for second consults, than to traumatize our kiddo. This experience also just reinforces the sense that we have that we cannot ask the parents of typical kids for recommendations; they simply don't know our situation. It's not that we are pickier than your average parent (well, okay, we are pretty picky) but also that we are dealing with a special set of circumstances. And that's okay--we need to meet and treat Hallie where she is. And in the process, we really do find some of the best professionals out there, so it's not all bad, right?

The other thing that this all confirms for us is that mommy instinct rules. (in the interest of gender and relational equity: daddy and caregiver instinct rules, too!)

What else, before I draw this huge tome that resembles the 18th-century tract in terms of length as well as title, to a close? Speech gains: amazing. Hallie has an avid interest in counting everything but her favorite thing to count is her toes. She likes to pull off her socks at diaper changes and count them and count them after her bath and before bed at night. Lately, she has not only been saying "one-two-three-four-FIVE!" but following this up with "FIVE TOES!" She has also been approaching Sharon with the following phrase "read book mommy please!". I think this counts as a real sentence! Woo hoo! She has been asking for increasingly sophisticated things by their name, resorting to her "I want some that, PLEASE!" only when she cannot name it. Not everything is clear, and sometimes we have to guess (figuring out that she was saying "Signing Time!" and not "Rachel" for her favorite show took a bit of work but I managed to do it---especially with the help of her addition of a fairly good approximate of the title in ASL). But words and phrases are coming in fast and strong and we are thrilled.

The other milestone reached this week is that Hallie has figured out how to put on her own socks. She is thrilled by this. So she can handle socks and shoes at this point; she is working on shirts and pants but tends to mix the two up a bit. She'll get there. She always does.

And speaking of getting there: her cold is clearing (still coughing some, still a bit congested, still on Albuterol) and the vomiting has abated a lot. So we've clocked in 160 days without vomit in this house this year, so far. Never mind that caloric intake is down (the two do go hand in hand, alas!)

And finally, as if that is not enough, Sharon hit 31 weeks yesterday (and her 38th birthday today). The ped, who had forgotten that Sharon is pregnant and that he is the one who referred us to our OB, just thought she had put on some weight...but of course said nothing because he has a wife and three daughters and they have trained him well. It's kind of nice to know that Sharon does not at all resemble a full-term pregnant lady, which is what she looked like at 22 weeks with the twins. So our fingers are still crossed, but things are looking more and more like she will go to term or close to term. And we are grateful for this.

OK--if you survived this update, you are a courageous reader indeed. I will try to be more timely next time!

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!