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.

Allergist Update

This is going to be brief because it's way late and I need to go to sleep so I can be up in five hours.

Ami (Hallie's fab nanny) and I took Hallie to her allergist consult this afternoon. Our girl was a bit of a mess since she's been eating very poorly (basically we're back to pretty chronic post meal vomiting again, particularly if she's had more than 2 ounces of Stage 2s or more at any one sitting). She's not vomiting with her bottles (I will probably regret typing this later on today!), just with food. And this has nothing to do with choking on real solids, purees, or anything of that nature. This has been going on for three days now. It's probably related to her chronic constipation, which seems to have gotten considerably worse in the past couple of days. This could be related to the introduction of some real solids in her diet, but whatever it is, it has not been responding to the reglan or the Miralax. It finally responded to the Milk of Magnesia I gave her in the car today and by this evening the problem had (temporarily) gotten better, but the vomiting post meals, sadly, had not.

Anyway, on top of this, Hallie had refused to nap altogether this morning. She even refused to fall asleep in the car, which is uncharacteristic of Hallie, especially if she hasn't napped in a while. None of us are sure what's up with her.

We got to CHOP without incident and Hallie actually perked up a bit when she realized that we were going to let her wander around the waiting room. We put on her socks and shoes, unstrapped her from the stroller and off she went. She had a blast (and her first big poop blow out). She was psyched.

All things considered, we got in to see the doc pretty quickly. Hallie's weight (taken post poop, but with a dry diaper on) was 23 lbs. 11 ounces, so even if we subtract for her diaper, she seems to be holding her own on this count. That's a bit of a relief given how the eating is going.

The allergist was great: we avoided the awful pricking of scratch tests since they do little to confirm or deny a cow's milk allergy (which is apparently really hard to diagnose) and instead ended up devising an assessment plan based on diet. We'll try her on goat milk only for a week or so, eliminating all cow dairy from her diet. If this helps, we'll just stick with it. If it doesn't, we'll try soy. And if that does not help after a week or so, we'll try the super-duper-bring-us-to-the-brink-of-bankruptcy-especially-since-insurance-doesn't-cover-it elemental toddler formulas (either Neocate, Jr or Elecare). We have samples of both, thankfully (but sadly just enough for a few days worth of trials). If she hates it and refuses to eat (remember, on top of everything, Hallie is finicky about her formula and always has been), we'll back off since our doctor sanely considers that aggressive treatment (e.g., an NG tube to force her to take the elemental formulas) is NOT the way to go in Hallie's case. As the excellent doctor put it, Hallie has been through so much aggressive treatment already and that this simply does not seem to be worth it. The costs of an NG tube (given Hallie's issues with food aversions, extra-sensitive gag reflex, etc) are just too great and would probably result in a setback that is greater than any benefit we'd gain from it.

The other thing we'll try, if the goat milk alone doesn't do the trick, is backing off of the calories a bit. I do this with some trepidation given her eating patterns generally, but I do know that 27-30 calories/ounce in its own right can be hard for her system to handle and that this could indeed be contributing to the constipation issue.

Anyway, this gives us a plan for the next few weeks, and hopefully something will help our poor tummy-ache ridden little girl. We've got to get her little system moving again and we need to get through this latest bump in the road. She is otherwise doing so well (her babbling is picking up more now that she's worked on her walking to the point that she can walk with toys, practically run across the living room even when it's debris-strewn, and happily stoops and picks things up without sitting down). And she's in the process of perfecting her climbing, too: she's gotten up and down off of the couch several times today and on Monday climbed onto the table next to the couch so that she could look out (and slobber on) the living room window. Sort of frightening, but a milestone nonetheless). If only we could get her GI tract in order I suspect we'll be a much happier trio. Meanwhile, we're all emotionally fragile, but through it all, I need to and do keep reminding myself how far she's come in the past year and a half and how well she's doing. Sometimes I feel like I'm being greedy, wanting to get all this worked out too, and that I should just count my blessings and be satisfied. But then I see how much her tummy hurts her, and I can't allow myself to settle for that. It's not really a matter of us hating the vomiting and all of the cleanup it entails. Nor is it our emotional and psychological health that's the real issue (though this, we do need to remind ourselves, does count for something and is important to our family as a whole). It's our girl that is the important one here, and if our girl isn't happy, nobody's happy.

And with that, I MUST get to bed. Hopefully things will pick up and head in the right direction in the morning. I've got my kid's prune juice miralax cocktail chilling in the fridge (ICK...prune juice always reminds me of a section in Goodbye Columbus by Philip Roth that I'd rather forget; plus, it has a bit too much of a ring of a Jewish grandfather's breakfast---specifically my zaydeh's breakfast----for my comfort) and I'm ready to turn in!