How Old is Hallie?

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Monday, December 31, 2007

Hallie's Favorite Things...

Just a quick post of some recent pics of Hallie. I suspect that these might be the last of the year since I've been so lazy about taking pictures lately!

Here's Hallie reading one of her absolutely favorite books (Goodnight Baby). We literally have to read this to her fifty to a hundred times a day, every day. She signs 'more,' and now her version of 'book' (which is not the official version but an inverted-raise-your-hands-up-above-your-head variation on that) over and over and over again.

Here's Hallie with two of her favorite friends. It's cute how she often pairs off Ernie and Bert and hugs them together. Today, however, she ate off a tuft of Ernie's hair. I was not pleased with her choice of pre-breakfast appetizers.

And here's Hallie on one of her many phones. She just started putting the phone to her ear, and now occasionally babbling or cooing into it when someone speaks to her. Lots of things stand in for phones, including bananas, play phones, a carrot refrigerator magnet and the like. And, yes, often our home phone, which she takes off the hook many times a day.

And finally, Hallie is an inside-the-box kind of toddler. She loves to dump out her toys (and toss them everywhere) and climb into this box. This morning, she got in on top of the toys and was very distressed about this. I said to her: "Yes, Hallie, Mama does clean up the toys and not leave them all over the place for us to step on! You should look where you sit before you get into your box!"

I inquired of a friend with a somewhat older child about when it is that kids start to clean up their own toys. I was distressed to find out that, although her daughter can accomplish this important life skill, that she finds it, "boring." Well, guess what, so do I!

Happy New Years Eve!

Friday, December 28, 2007

Holiday (Un)Wrap-Up

It's been quite a holiday for Hallie.

First, in the process of picking up numerous last-minute gifts last week, I saw this onesie at the Baby Gap (for a whopping $4.99) and had to get it for Hallie:

The shirt says it all!

Actually, I was looking for another in Hallie's size, but they were all out. What was its slogan? "Diape(red)" of course. I did get it in a much smaller size for an expecting friend of ours (whose identity will not be divulged quite yet since she's only 13 weeks along)

Then, on the 22nd, after a copious amount of drooling and finger sucking, we realized that Hallie's first one-year molar has poked through. Allow me to assure you that it is already quite sharp and that Hallie will no doubt hone it to even more of a razor like status in the upcoming weeks. Oy. Three more are clearly on their way. Should be fun around here. I guess that Hallie has reinterpreted that old ditty, "All I want for Christmas is my back teeth."

On the 23rd, Sharon and Hallie headed off to Aunt Laura's (forgetting the copious number of goat milk bottles that I had prepared -- but happily they had enough to get them through the night); I stayed behind to finish more grading (it's now DONE!) before joining them the next day.

Hallie, Grammy, and Sharon picked me up at the NJ Transit station straight from Fisher's Shoe Store, where Hallie was outfitted with her first real pair of walkers (having just outgrown her prewalkers, something that we did not realize until Auntie Neystice pointed it out to us). Hallie is really proud of her new shoes but still prefers chewing them to wearing them.

Then, it was off to Dawn and Bill's for the annual seven fishes dinner (though I think there were really only four fishes, and assorted cheese, chocolate etc). Hallie had a ton of fun pulling on the snowman's nose and banging on the basement door in the hopes that she might descend the steps and play with the bigger kids. Sadly, she was stuck with us.

Then it was time to change into jammies and await the big morning. Hallie had a typically rough night (with her teething comes more reflux and vomiting, alas), but that did not stop her from getting up the next morning for the reading of Santa's Letter (which included her, for the first time this year) and the wonderment and excitement of opening presents.

Hallie was super excited because Adam and Hannah were super excited; even though she did not quite know what was going on, she knew that something was up!

The tree was lovely, but sadly I did not get a good shot of it. Hallie surprised all of us by NOT eating the ornaments (though she did make several dives for the garland beads strung on its branches).

Hallie was very excited at the prospect of ripping bows off of presents and trying to undo the paper on most of the gifts.

And, of course, our little girl got tons of great toys and clothing and books and found the whole experience quite enjoyable.

Aunt Laura got a ton of snuggles in with Hallie and this made both of them really happy:

Cousin Adam's dream of becoming a fireman came true on Christmas Day:

And, I might add, he's probably the first fireman whose main tool is a vacuum; he LOVES vacuuming more than anything else and spent most of the day sweeping up the carpets with his very realistic (and realistic sounding) toddler-sized Hoover Wind Tunnel. At the end of the evening, as he was being changed (quite reluctantly) into his jammies, he even swept through the house with his vacuum in the all-together. Happily I spared him much ridicule as a teenager by failing to get a shot of that!

Later in the afternoon, Grandma Sandy, Poppy Jack, and Great-Grandma Ruth (Uncle Bryan's mom, dad, and grandmother) came for dinner. We had an all Jewish Christmas dinner...very funny.

Grandma Sandy held Hallie and Hallie loved it.

Here's the same shot in February 2007:

Wow, what a difference a year makes!

Alas, Hannah and Adam began to come down with a cold on Christmas Day, and by yesterday, so did Sharon and Hallie. Hallie ran a fever last night and began getting snotty, and Sharon developed an awful sinus condition (she always does when she gets a cold).

But the good news is that, aside from a little upper respiratory snarfliness and an increased tendency towards barfiness (great!), Hallie's doing all right. She had a pulmonology appointment this morning and satted 97-100% and her lungs sound clear. Hopefully she'll keep this up (and hopefully I did not just jinx her by saying this).

Liz, her pulmonology fellow, was thrilled by how Hallie looked; it's been 3 months since the last visit and Hallie has really taken off in all sorts of ways since then. And Hallie's weight gain has been most impressive---as of this morning, she's a whopping 24 lbs (and a walking advertisement for how bulimia does NOT make you lose weight). Anyway, we hope that this gives her the reserve she needs to fend off any major problems from this cold and that she's back on track soon.

Saturday, December 22, 2007

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.

Wednesday, December 19, 2007

Fun With Super Diaper Grover

To continue a theme started earlier on today...

If you listen closely, you can hear Hallie say "Diaper" in this one!

Doubly Protected!

This morning, Ami decided that Hallie needed a super new look to commemorate the 1000th time (or thereabouts) that Hallie used her favorite word:

Hallie, if you are reading this: please forgive us!

Hallie's suitors, if you are reading this: this wasn't Hallie's idea! If Hallie had her choice, she'd be dressed like this:

Please note the incredibly modest placement of Princess Hallie's mirror.

The really funny thing is that we swear that, when she looks in the mirror, she says the following: "So Pretty!" So much for modesty!

Saturday, December 15, 2007

Hallie's Antics

The past couple of days have been pretty fun ones for Miss Hallie Rose. On Thursday, her mommies went to Sharon's office holiday party (which was held at the spectacular National Constitution Center, which was designed not by Sharon's firm, but by Richard Cobb and I. M. Pei (who also did the pyramids attached to the Louvre Museum in Paris).

It was nice to do something grown-up (even if it was still work related) for a change, and Hallie got to spend some extra quality time with Ami, who reports that Hallie has the most fun in the bath of all the kids for whom she's ever had the pleasure to care.

Hallie missed us, however, and demanded an extra long bedtime ritual once we got home (around 10pm) and then was super cuddly/clingy all day yesterday. It makes us realize how little time she has spent alone from us, particularly at night. I think she's gotten used to Ami during the daytime, but the night time is family time around here.

Anyway, I know I've been remiss in posting pictures of Hallie lately; it's just gotten awfully hard to get a decent shot of our whirling dervish. Here's a good case in point:

Maybe next year Santa'll leave a D-SLR under the Chanukah Bush or something, but I suspect s/he has done his or her shopping already!

So what's new in Hallie's world:

1. Hallie''s really taken to 'feeding' herself the residuals of her applesauce (prilosec) snacks. She loves playing with the spoon and cup (and also with her Reglan syringe...Oye) and usually does a good job of getting the last dregs into her mouth:

I wish we had more tolerance for flung food and lost calories around here because we probably could teach Hallie to do real self feeding if we did!

And speaking of feeding, yesterday evening Karina started feeding Hallie some cheerios from her snack trap (Karina's, that is; Hallie doesn't have one yet since she doesn't snack conventionally). When I saw what was happening, I decided to let it keep happening. Hallie did well with the one-at-a-time snacks and chewed and swallowed just fine. I think it's a matter of how many she gets (at a time, but overall, too) and that in very small quantities she can handle these. She's certainly interested in solids. So we're beginning to experiment a bit (we gave her some fruit flavored cheerios before her dinner last night and she loved them. So did Karina, who kept begging for more 'naks' and who was thrilled to have them ruin her dinner).

2. Now that Hallie has pretty much mastered walking (and staying upright; given the amount of toddler debris around here, I am not sure how she's managed to avoid sliding and falling on books, stuffed animals, etc), she has, as predicted, begun to vocalize a whole lot more. Over the past week, we've heard the following words from Hallie:

diaper (pretty often and most often related to the actual object, which she'll bring over if you ask her to do so and she's not distracted by something else more compelling. She also does seem to use diaper to refer to Elmo, which makes sense since he is the main character on the Pampers Cruisers she wears).

book (a couple of times)

Big Bird (used pretty consistently and a main word for Hallie)

baby (though her pronunciation is a bit odd)

doggie (to refer to stuffed animal and live creature alike---Elisabeth and TJ's dog was a source of much fascination and some fear on Hallie's part the other night)

kittie (to refer to the live creature and kitties in books that she owns)

paper (she used this once for her speech therapist, who was thrilled since Hallie often refuses to talk at all for Jenny).

And on top of this, she is vocalizing a lot, greeting us with babbles, bringing toys over and babbling and the like. This obviously allays a lot of our fears about Hallie's speech delays, which do seem to be delays, but not indicative so much of a disorder.

But we are wondering this: what kind of kid's first word is diaper? What ever happened to 'mama'?

3. Hallie has proven herself to be her Mommy's daughter yet again: she's begun to climb in earnest. Not only has she mastered the fine art of getting up and down on and off the couch on her own, but she's taken this one step further: She has begun to scale the arms of the couch and threatened to jump into the pack and play. She has also tried to get over the back of the couch to see what's behind it (a lot of Hallie related junk is the answer to that question in case you're interested) and she's taken to climbing onto the table that's between the couch and the window. At first it was to get a hold of the answering machine and the phone, which Hallie finds very attractive. Then it was to get a better look at what was going on outside. And now she's figured out that she can STAND on the table and wave to her public, play peek a boo, and get an even better look at the television. Great!

And just to give you a sense of how big Hallie's getting, I'm including this picture, taken last April, of Hallie in the same Hanna Andersson sweater that she was wearing this morning.

You'll note that, this morning, the sweater is riding up over her belly and is pretty snug elsewhere. In April, it was HUGE on her. Wow. Time to start hitting E-bay for some more used high-end clothes in bigger sizes!

Thursday, December 13, 2007

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!

Sunday, December 9, 2007

Question: Vocal Cord Paralysis and Eating

I know that there are a bunch of you moms out there with experience in this field, so this one is for you:

Yesterday, Sharon was eating a piece of reheated pizza and Hallie expressed a lot of interest in it, and so we thought: what the heck, she's not had anything to eat in a while, why don't we let her experiment with taking a bite and see what happens (and of course we prayed we didn't have to dust off those rusty CPR skills). It went great--it was clear that she knew how to bite (all that practice with book eating really seems to have paid off), and she knew how to chew--definitely up and down and perhaps some rudimentary rotary chewing. She still is lacking her first year molars, but she looked good chewing. And she even figured out how to swallow without panicking (we've always assumed the vomiting up of solids was a fight-or-flight thing kicking in).

That went well and we thought: maybe the issue is that Hallie can't deal with thick purees' texture but is okay on crunchy stuff (there is evidence that this is true of other kids). So we decided to see what she would do with the first real hard food kids often get: biter biscuits (or teething biscuits). We have a full stash of all possible foods you might feed kids who are transitioning to solids (of course we do: whenever she fails to eat I buy new products that she ends up not eating in the hopes that she might be able to eat them). And so I ran to the kitchen and got one and we put her in her high chair in front of a Sesame DVD and let her have at the biter biscuit.

She did great. It took awhile, but she bit off pieces, chewed them, pulled out pieces that were too big, put them back in (sorry about that graphic image) and ended up swallowing them. There was a tiny amount of choking, sputtering, spitting, but nothing disturbing.

Now we were really puffed up, so I decided to pick up some Cheese Puffs (sorry about that bad pun) at Whole Foods (they are NOT as tasty as Cheetos, by the way). We were going to our neighbor's Josh and Nancie's for dinner and thought that it might be nice to use these as a bribe for Hallie to stay in her high chair and let us eat dinner together like real people do.

This worked for a while. She bit, crunched, munched and swallowed. We were thrilled. Our kid was eating something normal. Our kid was eating the same thing that another kid at the table (Ethan) was eating. Wow.

But then the choking started. And with it, the spitting. Which turned into vomiting. And morphed into projectile vomiting.

And so my question for you guys out there is this: is she doing this because food is going down the wrong way because her vocal cord is paralyzed ALMOST but not quite at midline? Is it going to be possible to do something about this if that is the case? Will that something involve a. surgery, b. botox, c. training her once she is old enough to follow our guidance how to handle solid food when choking happens, or d. something else I haven't thought of doing? And what do we do in the meantime? Do we go back to the nasty purees like the feeding clinic wants to do, just feed her Stage 2s because they are safe and we can get them in with minimal distress and they help her get nutrients and calories, or keep trying with the crunchy stuff? We're at a loss here, and kindof sad to have moved so quickly again from elation to dejection in less time than it would take you to chew and swallow ten cheese puffs...

Saturday, December 8, 2007

Happy Hanukkah!

It's been another crazy week around here, what with grading and finishing up my courses, another doctor's appointment for Hallie, and more importantly, all of the celebrations underway, namely Hanukkah/Hanukah/Chanukah (I never know which spelling is better) and Sharon's birthday. We also had our first snow that stuck (and made the roads really icy, which led to a near miss when my friend Carmen and I spun out in front of the outlet malls on Route 30 coming home the other night and then limped slowly -- with me acting as the driving coach, which is pretty ironic given that the biggest reason why I don't drive is because of my extreme driving anxiety). This snowfall, alas, such as it was, primarily constituted a nuisance and did not lead to any cute pictures of Hallie making a snow angel, learning how to not eat yellow or brown snow, or even staring wonderously at the falling flakes.

Fortunately, Hannukah proved to be more fun for our girl than the snow did. She was riveted by our singing of the blessings on the first night (until she got bored and ran off to play with her Little People school bus; the melding of "Maoz Tsur" and "Stop and Go, Stop and Go, Off to School and Take it Slow" was charming in its cacophony, really). And she thought the flames on the candles were really cool to watch, too. Remember that this is her first "real" Chanukah, since last year, with the oxygen and all we were consigned to using an electric menorah. Turning a light bulb does not impart the same sort of holiday spirit as lighting a candle does. Call me old-fashioned. Anyway, we've been trying to light candles every night, and have hit a 50% mark (last night was night four). This, of course, means that we'll be left with more Hannukah candles to add to the stash we already have. And since we never buy precisely the same kind each year, this means that some year we'll have enough for all eight nights (assuming that we actually manage to light candles every night) but that the menorah itself will take on a pretty crazy quilt appearance.

I digress (as usual). In any event, on Thursday night we were thrilled to have over to our house our friends Rachel, Dan, and Maya, who are in from San Diego for Dan's work for a few weeks. Elisabeth and TJ also came over with their baby, Sam, who is about seven months old (Hallie shared some of her food with Sam and I wish that she had taken notes from both Maya and Sam about how to eat, since they are both champs.) And Mark and Vanessa brought Karina over, too. So it was quite a little gathering. The girls had fun together and managed to create a lot of fun toy messes and it was really nice for us to catch up with everyone--Rachel and Dan, obviously, since they now live clear across the country; and Elisabeth and TJ, whom we don't see often now that Sharon doesn't work with Elisabeth anymore; and even Mark and Vanessa, since Karina was sick for a week and we were deprived of their presence as a consequence of that. We ate latkes (I made them Wednesday night; the house still smells like cooking oil and potatoes and it's now Saturday morning), sang, chatted, drank wine, ate yummy desserts and had a generally nice time. We took horrible pictures with our camera (the lovely shot above is courtesy of Rachel; thanks Rachel!), but here's a cute video of the three girls on the couch:

Yesterday morning, bright and early, Auntie Neystice picked up me and Hallie so we could speed over to her GI appointment at CHOP. This was just a routine follow-up visit and I was none too thrilled about going. Not only did it mean Hallie would miss breakfast and screw up her eating day, but I hate the idea of taking her in to a hospital full of sick kids smack dab in the middle of cold and flu season. Synagis shots provide a bit of reassurance but not much. Fortunately, when we got there the waiting room was empty with the exception of one six or seven year old (who was still trached and had a feeding pump; I couldn't help but notice this, nor could I help but notice that this did not seem to slow him down one iota. The only indication of the stress involved was the tired look on his mom's face, and that made me feel like a woos and an ingrate for complaining so much about things like vomit and Simply Thick and reflux).

We got called in very quickly and did our weight and height check. As we suspected was the case, Hallie dropped some weight between ten days ago (last feeding clinic appointment) and now, but not a frightening amount---she is 1058 grams (that's just shy of 23 lbs 3 ounces). She was 23 lbs 6 ounces at St. Joe's on their old-fashioned scale, which was probably as accurate as can be. And we know that she has been eating poorly over the past ten days, so a loss of 3 ounces doesn't seem terrible. That said, we need to figure out how to reverse this trend, and I am not sure how simple that one's going to be. She also shrunk since St. Joe's, but this isn't real so much as the difference that one typically sees when different people assess squirming toddlers.

The GIs couldn't be happier where Hallie's weight/height are concerned; she is somewhere between the 25th and 50th percentiles for her actual age (18 months) and they don't bother to correct anymore (we do, but that's because, contrary to popular opinion, we're not only concerned with weight and height but development more broadly). Given their glee, I thought to myself: yet again, they are not going to listen to me when I tell them about her retching---which has picked up a lot in the last few days---and the delayed gastric emptying (ditto) and the reflux (ditto, ditto). Once again, they will tell me to taper her doses on the meds because they are too high and because at a year, kids outgrow reflux. So I was gearing up for a battle.

Hence, I was pleasantly surprised, for once, that they DID actually hear me out and come up with a plan to do something. First, they upped her Reglan once again---yes, folks, we have gone from people who were vastly afraid of Reglan and were under no circumstances even willing to try this drug to people who literally pour this stuff down their kid's throat. This is beginning to be a bit of an issue because it is far easier to 'inject' (using a syringe, but no needle) drugs in your kid's mouth when the drugs taste okay (we add bubblegum flavoring at CVS; it's very much worth the $2.99 cent cost) as long as the quantities were small. So 1 ml--no problem; 1.3 ml--easy as pie; 1.5 ml--doable. 2 ml: if the kid turns her head and it heads down her throat and she aspirates it---not so much fun. This happened last night and we had to redose her prilosec (for a second I thought about digging out all the little beads from the stuff that came up instead of giving her a whole new dose; then sanity took hold once more and I realized that this endeavor was not only hugely gross in its implications but that it's probably not a big deal if Hallie gets a couple of extra prilosec beads given her reflux situation anyway).

They kept the prilosec the same (she gets 30 mg a day, split into two doses) but if things don't get better in the next two weeks, we need to try her on Prevacid again to see if that helps. We like the idea of prevacid but the solutabs are hard to swallow when diluted if you have a swallowing disorder that leads to aspiration (read above again, this time with feeling). We'll try to see if she will just let the solutab melt on her tongue, but are not extremely hopeful. If that doesn't work, I'll see if I cannot dissolve the tab in water and then thicken it with Simply Thick. It sounds complicated but might work.

We've also now added a small dose of miralax (1/4 of a capful, or a 1/4 of the typical adult dose) once a day to soften Hallie's stools. This might make it easier to move things through her system and any little movement is a good thing.

Other than that: no real changes. We were in and out of the appointment in under two hours. Not horrible. And when we go back in three months, we're going to get the first appointment of the day again because, by the time we left the office at 10:30-ish there were dozens of kids in the waiting room. Even if March weren't still flu season, I'd rather not have Hallie running around a hospital waiting room with lots of other kids.

Hallie and I had a pretty nice afternoon, all things considered (she did refund her bottle in the car, but that was my fault: I was sleep feeding her because of my panic about her not having anything more than two ounces of formula to eat yesterday morning). This meant that there was no morning nap, but we did have a fun time reading books, playing ball, kissing and hugging her stuffed animals, and playing "keep Hallie from jumping off of her chair and climbing onto the radiator in her bedroom." I play Hallie's mom in this game, and she plays a monkey in need of a jungle gym.

Lunch was fine, Hallie's two hour nap was glorious, and I not only got to comment on and send off some student paper drafts, but also managed to wrap some of Sharon's birthday gifts. The birthday girl herself came home to a team of vomit-cleaner-uppers (read above concerning Reglan refunds yet a third time) and happily did not have to engage in said activity on her big day. What Sharon did get to do was go out on a dinner date with me; Auntie Neystice and Auntie Kim graciously volunteered to babysit Hallie for the evening. We had a lovely time; we've forgotten how nice it is to go out with one another and spend time together that way. We definitely need to work dating each other back into our lives; and not just on birthdays either.

Saturday, December 1, 2007

Holiday Photos of Hallie

Here are five of the thirteen shots of Hallie we got last night. Thank goodness we borrowed Mark and Vanessa's Digital SLR Nikon camera; our lovely but very small Sony was not equipped for the kind of shots we needed to take of the walking and crawling princess. Hallie has become a very fast walker, and not just a super-speedy crawler, so she headed off in some direction (usually dangerous) as soon as we placed her near a wrapped faux present or particularly fetching ornament. I am not sure how old a child needs to be before they heed photo-taking directions, but hopefully it'll coincide with our next holiday shot in approximately a year. Meanwhile, we feel lucky that she was smiley and hamming it up despite her lack of a nap and that her vivacious personality shines through in these shots.

In other news: Hallie spent Saturday and Sunday with her cousins and had a really good time. I missed her a lot, but had a huge amount of work to do that kept me busy. While in New Jersey, her cousins taught her how to shake her head 'no', which she thinks is hilarious. We're trying to get this on film and if we do, I'll post it (strikes me that I haven't done a movie in pretty much forever). But even though she uses 'no' in a lot of contexts where its usage is unwarranted, she definitely knows what it means. She has been using it consistently to signal the end of a meal (usually around 3-3.5 ounces into it, which is fine). I suspect that she'll be using it (and hopefully, someday, its oral analogue) with us a whole lot more and in many different settings. Woe is us.

And, finally, on the feeding front: she had a great day yesterday (Sunday). Four poops, no vomit. Our third emesis-free day in that many weeks. It could be related to the pureed baked beans we gave her for breakfast, lunch, and dinner two days in a row. She also got fruit and some stage 2 stuff, but those beans were apparently potent and does make one question the expression 'full of beans.'

I was hoping that we'd be able to congratulate ourselves today on a new record, but no such luck. She had a small 'urp' during her pre first nap bottle, but we were not even counting that. Problem was that, despite napping a whole 1.5 hours today, our kid was in no mood to go to bed after dinner. So Sharon had her on the futon and Hallie was her usual playful self and was thumping all over the place. This is not a good thing to do if you have weak sphincters after downing 3.5 ounces of bottle. So up it, and perhaps some of dinner, came. I guess the laundry gods thought that three loads this weekend was not quite penance enough for me. One bath and a new bottle later and hopefully we'll make up for, dare I say it, spilled milk. But we're still waiting for our record. Any betting fools out there? I should start a pool for guesses about when we'll finally hit that important two-vomit-free-days-in-a-row milestone.

(NOTE: This post was begun on Saturday with the uploading of images but text was added on Monday)

Food For Thought

Well, here we are, it's December. Hard to believe.

The past few days have been exhausting ones. It's a miserable time of the year if you are teaching (or a student in college; I empathize with those of you taking classes and not just teaching them). But, honestly, even more time consuming and distracting to me is the feeding front here at home.

As all of you know who have been following our saga, Hallie has been 100% orally fed and growing well since her last week or so in the NICU way back in September 2006. That's great. There has also been a lot of progress on the feeding front with Hallie and I don't want to minimize that. She has accomplished the following:

-in terms of liquids, she has gone from bottle struggles all the time to sleep feeds nearly all the time to drinking most of her milk (yes, there is nary an entry without the words "goat milk" in them) while awake, and the majority of it from her honey bear cup, and not from her Dr. Brown's bottle. Even most of the bottle feeding is while she's awake now---yesterday, she almost entirely refused to nap and hence took 3 ounces from her bottle (a lot of it while holding it herself) at 11:15 am (she did eventually fall asleep but the phone woke her at 12:45) and then she drank 4 ounces from her bottle while awake (and never did fall asleep) at 4:30ish. It takes a long time for her to do this and her suck is still relatively poor, but the fact that she'll drink liquids awake constitutes major progress.

-in terms of solids, she has gone from nothing (back as late as July) to three solid meals a day. Until this past Monday, we were able to get at least 4 ounces and sometimes as much as 5.5 (depending on the calories---we aim for around 100 or more per meal) in her at every meal. The food, however, is far from age-appropriate. She is stuck on Stage 2 foods and is fed entirely by us. We do give her a spoon with which to play, but we do the feeding. And all meals must be accompanied by Sesame Street and never happen at the table but in her high chair in front of the entertainment center cabinet. Any variation from this and we have a disastrous meal, so this limits our ability to be out during mealtimes. Plus we no longer eat as a family (even in front of the TV---hey maybe we should all get high chairs; that'll solve that problem). We grab food when we can and if we can and our lives are run by Elmo and Company. I am not complaining: after all, she is orally fed, but the question is: how long does this go on for, and will we ever make progress.

From time to time, we have tried food experiments. Once, Hallie ate bits off of a Hershey bar and loved it. The second time we tried this, she vomited profusely.

We've tried really mushy mac and cheese and that worked once or twice, in small quantities, but we've backed off of the dairy because we suspect that she may have an allergy to cow milk. Same thing with cheese, which is the only thing that she has reliably wanted to eat when given to her (this has been true for months now. Small pieces of easily mushed mozzarella, american, or string cheese works for her and for a while was a reliable source of 25 to 50 calories a day. With the dairy issue, we've stopped this).

And there are more strange cubes and containers of homemade food in the freezer than I care to admit: I am a cook, so naturally I try to cook for my daughter. Food that comes in jars and that is not identifiable to me has always made me suspicious. So I tried homemade avocado, chicken in gravy, squash, sweet potatos, brocolli and cheese, etc. It's hard to make one feeding at a time, so the rest goes into jars and cubes and ends up taking up valuable real estate in my freezer that is already home to other strange things like chicken carcasses, rinds of parmesan cheese, little packets of chipotles in adobo sauce, etc).

Last week, we managed to soften fruity cheerios in goat milk (second mention!) for around an hour and she ate about 20 of them. We were going to try this again, but we were told that we were skipping stages (read below).

Which brings us to where we are now. On Monday, we saw Peggy Eicher at St. Joe's, and she felt that we needed to move forward with the feeding, but that we needed to do so in a more orderly, staged manner. Great. Hallie ate the brocolli at the feeding clinic that was a table puree (the stage toward which we are supposed to be working). Then she vomited. That night, at home, she ate whatever concoction I fixed for her, but the next day refused to do so after vomiting it up the first time. Ditto on Wednesday. Thursday, we had a vomit free day, which was great. Yesterday: not so much. She happily ate her fruit and oatmeal table puree, finished eating, I finished congratulating myself, and out it came. For dinner, she drank 3 ounces of her formula (to avoid a third reference!), ate half an ounce of veggies pureed in chicken gravy, and spewed it forth. Feeding her after this was a major struggle. She did, however, enjoy sitting on my lap and dipping her fingers into Sharon's pasta sauce and licking them, and then of course, smearing them all over the place, and licking them again. This came post dinner, and as long as she didn't vomit (never to be taken for granted, alas), that was fine with us. It's the first time in a long time that food was fun for our girl.

Where do we go from here? I think we're going to try to cycle the jarred purees and table purees and see if that works better, and then once we have a vomit free day or two or three, up the amount of table purees. Some say that that might work better than the shock treatment. At least it'll keep her growing. And I think we're going to try to come up with plans (ideas anyone?) for more 'fun' food sessions like the pasta sauce on the lap episode of last night. I hate, hate, hate the idea that Hallie will grow up hating food. Food is such an important part of culture (and admittedly I might just like it too much) and so important to sociability. As someone who is Jewish, my sense is that all of family life is and should be organized around food. It pains me no end that this is something that is lost on her. And not being able to eat anything but smooth baby purees that come in jars also means that it's nearly impossible for Hallie to feed herself and develop the important skills (fine motor, social, etc) that come along with that. This will make it impossible for her to spend time at preschool or daycare or whatever once she is old enough and well enough to do so. Unlike so many of our kids, she doesn't shy away from putting food in her mouth, and she will want to grab and eat other kids' food (she already picks up Karina's discarded peas and raisins) but this will present a choking hazard to Hallie well beyond when it is supposed to unless things improve, and I can only imagine how much of a pariah she will become when she vomits all over the place as a result of the panic that ensues when she takes solids into her mouth. Already, last week, one of our young friends (who is three), asked me why Hallie vomits all the time and expressed disgust at this. It is disgusting. And I hate to think that my baby, who already has so much ranged against her, will be teased at school for this, too. (Let's not forget that it'll be hard enough for her already: not only can't she eat right, but she is the daughter of a same-sex couple, has scars on her tummy that will probably never go away and may even get more noticeable, and a big scar on her back from the PDA, and little ones on her hands, feet, and face from IVs, the pulse-ox, taping of ET tube, etc, and she takes lots of medicines. That's a lot, already, and there are no guarantees that nothing else will go wrong. She is doing fabulously where gross motor skills are concerned, but her speech delay is pronounced, and who knows what the future holds for us?

I know that it is my tendency to look at things in the broad, long term (I am a historian, after all, and my personal brand of history privileges the longue duree over the small incident), but it's hard not to worry about where we are, and where we are going.


Anyway, if any of you have any advice for us, please let me know. Meanwhile, I will just try as best as I can to refocus my attention on the good stuff: Hallie has accomplished a lot. And she is one of the happiest kids I know. Last night, we dragged our napless princess (who fell asleep just as we parked the car) to Macy's (the old Wanamaker building) on Chestnut Street. We caught two minutes of the Christmas Light Show and need to take her back for that. But the goal was to take her holiday card photo. We set up shop in front of a big Christmas tree in the building (not the store itself) and tried desperately to capture our extremely smiley, very happy moving target (seems like the two second powernap worked). She had a ball walking (practically running) from the tree to us adn scared the devil out of us by racing to the escalators. She had a grand time and it's this stuff upon which I wish I could manage to focus more, and not on the food and the fears and the struggles.

I hope that some day she reads this, while eating a sandwich or something, and laughs at me and says, "mom: of course I was going to eat. Why were you so afraid? I always did do things my own way." And if you do read this, honey, sorry about all the mentions of vomit. And, oh yeah, of goat milk, too.