(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:

Synagis Shot No. 3: Poor Baby!

Hallie had her third Synagis shot of the season yesterday. She hardly shared our opinion of these injections (which are not quite vaccinations, but rather infusions of live antibodies subcutaneously that are designed to protect---though not vaccinate you against---respiratory syncytial virus, which is what causes a common cold in most of us but can land preemies and others who have lung damage on ventilators). While we might conceive of yesterday's infusion as an early Christmas present for Hallie, it is pretty clear that she saw it as a huge lump of coal (in each thigh).

She kind of knew what was happening, too. At first, she was very eager to be at the ped's office---we let her run around instead of confining her to the stroller. Now that she can walk and isn't on all fours on the carpet and isn't quite so prone to putting things in her mouth. We purelled the heck out of her and the table top toys and are hoping for the best. There were literally no other kids in the waiting room and it was totally quiet, so that made us feel better. Lee Ann, Hallie's favorite nurse, was thrilled to see her walking and waving and even got to hear "diaper" and a few other words from Hallie. So that part, and the usual marauding that Hallie does in the examining room were fun: she shreds the exam table paper, reaches for the scopes to use them as phones, opens and closes the drawers under the exam table, and other fun things. It's IMPOSSIBLE to take her in to the doctor on one's own and still retain sanity/have the capacity to discuss what's going on with Hallie with nurses, doctors, etc. While this is annoying, it is also part of Hallie's singular charm and frankly I love it that our little girl enjoys exploring her universe so thoroughly, even if she does leave a bit of a destructive debris field in her wake).

Then, however, Hallie realized that other kids were screaming from rooms close by. Hallie has inherited Sharon's empathy streak; this is a good thing, but can be a problem in situations like these. So she was virtually on the verge of tears when the two nurses came in to double team the Synagis shots, which are now (like Hallie) pretty hefty in terms of dosage. She screamed, bawled, squirmed, and tried to get away from me and Auntie Neystice (my co-conspirator in RSV shot administration). Then, after the injections were done, she continued to cry and shake. It was pathetic: she soaked my sweater with gallons of genuine tears, held onto Bailey (her new baby that was a present from my mom that Hallie absolutely loves) and Grover (the other big light of her life right now), and was inconsolable. We dragged her pants on (which probably made things worse, but it was 35 degrees and raining out and we were not going to transport her to the car in her diaper) and fled the office. She calmed down the minute we left the doctors' office because she knew that the pain of the RSV shots was all that she was to endure and that she was now safe. But it took quite a bit to calm her down even once we got her into the car and I was thankful for her bottle and for her binky. Then Hallie fell asleep, hard and long, and we sat in the car parked in front of the house for two and a half hours while she slept it off.

By evening she was fine and back to her usual self. She's still pretty irritable, but this is largely attributable to her teething (those molars really are coming in---her gums are all shredded feeling but no teeth have cut through yet; their arrival could not come soon enough for me because she's LIVING on tylenol these days. Whenever she sees the tylenol bottle, she smiles, reaches for it, opens her mouth and calms right down. Yes, we have a junkie in our house and yes we keep the bottle far away from her because she is clever enough to figure out how to open it and ingest its contents. We do not want an unscheduled ER visit any time in the near or distant future.

On the eating front: she's kind of on strike right now and we are not sure whether this is related to the teething, her increased willfulness and the appearance of some obviously behavioral eating issues now that she is older, or her delayed gastric emptying/constipation. It could be all three, really. She's been pretty good with her bottle and her bear (milk) and decent with her juices (though she likes the miralax free version better than the stuff laced with laxative). But she's been horrible in terms of purees and baby food. She did accidentally get fed some mac and cheese gerber stage 2 food earlier this week and this might have set her back; in any event, we are going to start the goat trial over again, and I think I will back down on the calories some more and see what happens. Miralax does not seem to be working. This could be because she isn't getting enough of it in her system or it could be because its benefits tells us are limited when constipation is a result of an allergic reaction (why the GIs failed to mention this is beyond me; sometimes I wonder why we see them at all). Milk of Magnesia works great but may lead to malabsorption of nutrients and the GI doesn't want her on it (I might seek a second opinion, given our opinion overall of the GI), But maybe fewer calories plus more liquids will help. Her diet is already replete with all sorts of anti-constipating foods: mangos, prunes, very ripe bananas (turns out these are great for constipation whereas the green ones are great for diarrhea. Who knew?), berries, karo syrup and the like. She eats mostly fruit these days, and she drinks juices, and is off of yogurt (but takes probiotics in her formula) so she should not have a big problem with pooping, but alas, that is not the case. We'll see how it goes and if I need to try her on soy milk, we'll do that next.

But meanwhile, she continues to grow. She's now a whopping 23 lbs. 12 ounces, which puts her at close to the 50th percentile for her actual age. She is doing phenomenally where that is concerned. We're not sure how this happened, but we're thrilled at her size and sturdiness and we promise not to ask too many questions. All I can say is that there is no evidence of her crawling down the stairs (thankfully, since in our house with its boxed in windy staircase this is too frightening to imagine) and raiding the fridge in the middle of the night (I should know: I am up in the middle of the night. Sigh).

So, if we could only get her GI tract working right motility and elimination wise and then figure out how to handle the texture issue, we'd have it made. So, if anyone can figure out how to give me that scenario for Christmas (yes, Virginia, I am Jewish, but it's okay to believe that there is a Santa Claus, isn't it?), please do... I am tired of boring everyone with tales of vomit (I did not even bother to tell the story where she vomited this week on herself and Ami and I ended up washing Ami's cellphone) and poop and want instead to talk about Hallie's laughter, mischievous streak, antics, words, and the like.

Last RSV Shot of the Season

Bright and early on Friday morning, Auntie Neystice (my best friend, Renee) came toodling on over to take us to the pediatrician's office for Hallie's last RSV shot of the season. Ney has been present for every single one of Hallie's RSV shots, and Hallie hates them (who wouldn't? The needles are as long as the ones that they use for horses and the medicine they contain are not vaccines in the classical sense but live antibodies. As the baby gets bigger, so does the dose -- we were within ten grams of having to have it broken up into two shots, something that I am sure that, holographic bandaids or no holographic bandaids, Hallie would have NOT at all enjoyed). Nonetheless, Hallie's has most certainly not projected her loathing of the needle onto Auntie Neystice. Indeed, she thinks Renee is a blast and they have a lot of fun giggling together. This is especially the case in the doctor's office because the examining rooms contain fun crackly paper. Yesterday, Hallie shredded the whole sheet during the twenty or so minutes we were in the exam room.

This shredding is caused mostly by the thump-thump-thumping of Hallie's legs. This has earned her the new nickname "Thumper." Hallie thumped on the exam table, thumped on the scale (it took a long time to get an accurate weight--which is 14 lbs. 2 ounces, or 6405 grams), thumped on the couch when we got home, thumped in her crib, and most recently thumped on the playmat in her room:

The image is a bit blurry (even on the sports setting) but that just reinforces how thumpy our thumper can be.

Tomorrow, I'll post some observations on our attempts to get Hallie to roll.