Weekend Update

Hallie spent her weekend with some of her favorite people: grammy, who came in from South Jersey to see the kidlet, and her fellow commune-ers (which now includes Ethan's little brother, Cole---we need to get a picture of him up here pronto).

On Saturday, Karina was trying on her little red riding hood cape as Sharon, Grammy, and Hallie were heading out the door for one of the many frequent visits Hallie makes to the local Whole Foods Market (Hallie loves it there since it's stroller heaven and she gets to flirt with all the other kids while grabbing things off of shelves to put in her mouth. The kid has quite a reach).

While we were all standing outside, Karina kept going over to Hallie to kiss and hug her:





We thought this was very sweet and rivaled only by Karina's running into our house, rushing over to Hallie, and pronouncing "Mine, all mine!" while hugging and squeezing her.

Sunday morning we all got up bright and early to dress the kids in their Hallowe'en costumes and head over to Franklin Square for the kiddie costume trick-or-treating event. Here's our communards, minus a sleeping Cole who was dressed as a teddy bear:



Big brother Ethan, who is popular on a normally-clad day, was particularly attractive to all of the other kids in his fetching Elmo costume. And Karina made a lovely little red riding hood, indeed, and got to hold her signature basket (she is learning early on from Vanessa that it's important to have the right bag with you at all times).

Hallie was a very cute piglet, which is a sort of ironic costume given our girl's relationship to eating.




Hallie's costume is a 12-18 month size and so we thought that it would be a bit on the big side. We were wrong on this count; it was actually quite tight on her. What the kid lacks in girth she more than makes up for in length, and so we fear that it was not much fun for Hallie to run around in this particular outfit. Next year we'll get something that is two-piece just in case.

Hallie did have a nice time, though, picking flowers with mommy:


And right after that, she demanded to be changed out of her costume and took a nice long nap in the stroller while all of the other kids went on the carousel and ran around in the toddler playground. Hallie is just not used to getting up so early (9am). This will, alas, change next week when Sharon goes back to work and Hallie begins to be subjected to my schedule (I get up way early--around 5:30am--for work (not out of choice) and even though I sleep in on other days, this often means getting up no later than 7 or 7:30. Amy will be over to watch Hallie around the same time on the morning on days when I am in the office, so we expect that Hallie's internal clock will begin to reset itself sometime next week.

Hallie's early-to-rise Sunday experience was replicated on Monday, too, when we had to pry her loose from the bed and scoop her up and into her carseat to make it over to CHOP for her ear tube surgery. The surgery itself was a five to ten minute affair, but the anaesthesia (both getting numbed up and snapping out of it) dragged the experience out to four hours.

At first, that was not at all a bad experience for Hallie. Around 8am the nurses came by with 'giggle juice' for Hallie, a cocktail of tylenol and versed---the latter is all too familiar to us from the NICU days. Turns out that Hallie's response to the versed back then was probably a lot like her response to the versed this time around. Long story short, it had her in paroxysms of laughter and mirth even as it did get her, for lack of a better word, pretty stoned.

Here she is giggling with Sharon:



I really wish that we had this on digital video and not just in still form because Hallie had a pretty hilarious time of it. This reminded me of how she used to roll around on versed in the NICU even when she weighed less than a kilo. This always surprised the nurses since the drug was supposed to knock you out. Not our girl; nothing but nothing (short of pavulon, which saved her life by paralyzing her for her PDA ligation) really had that affect on her.

In any event, the surgery went well. There was a buildup of fluid in her ears, though it was not at this point infected. The ENT felt that the choice of placing tubes was very justified, and he hopes that this will make her ears less prone to infection. So do we.

The surgery had Hallie pretty cranky and tired, and so she did end up sleeping away a large portion of Monday afternoon but was more herself by Tuesday. Unfortunately, part of being Hallie is refluxing---we suspect that since it always hurts to have food in her tummy (either because it comes back up or because she is such a slow gastric emptier that she always feels bloated, or some combination thereof), she is now actively working at making herself vomit (she sticks her fingers down her throat, or eats paper, etc). This is, of course, the last thing we want her to do, and we are actively searching for something that might help. We are backing off on some of the Simply Thick, just in case the xantham gum might be constipating her; we are adding Karo Syrup to her bottles to help her move food through more (which is particularly disgusting when you consider how sickly sweet the pediasure or nutren is already); we are giving her suppositories, prunes, mylanta, miralax etc. Nothing really is helping. The erythromycin was too powerful for her system and with her tummy not emptying, it managed to push food up rather than down and make her pain worse. We are at wits end and we keep having to remind ourselves that we are just looking for a management device and not a cure. Sigh.

Anyway, that's all for now. Hallie will trick or treat this evening, after her belated 15-month checkup with her pediatrician. Hopefully he, or her feeding guru at St. Joseph's, will have some advice about what to do next. Meanwhile, we will just try to enjoy our smiley, smart, active, and very interesting little girl and be thankful for what is, and try not to focus on what is not.

She's got a new way to walk...

Much to Karina's relief, since this means that she no longer has to push along her protege, Hallie is now officially a walker. Over the past week or so, we've been working with Hallie on taking independent steps. We would sit in one place and have Hallie stop and stand a few feet away from us. We did this by having her clap, which deflected her attention away from the fact that she was in the middle of the room standing up and not holding onto anything for support. Then we'd ask her to walk over to our open, outstretched arms. Thus we managed to turn what must have seemed to Hallie to be totally frightening at first into a game. Hallie took her first two, then four, then six steps that way last weekend. Then Sharon got the brilliant and inspired idea that she should start scooting backwards, which would have the effect of forcing Hallie to traverse longer distances---ten steps, twelve steps, etc. Finally, yesterday Sharon coaxed Hallie to walk *away* from her and over to the couch. This we captured on video, since by the time I got home from work last night Hallie was doing it over, and over, and over very predictably and with quite a lot of stability:



Last night, Hallie even walked from one piece of furniture to another without holding on (and without getting down into a crawl position). She did this unprompted by us. So she really does seem to have mastered this skill.

We should be frightened about all of the stuff she can now do (like learn to run), but we're too busy being proud of our little girl. She's officially a toddler.

Now if only that old tale about reflux disappearing once kids start walking were only true...

One-Year NICU Follow Up

It's hard to believe, but Hallie just had her annual NICU follow-up. As usual, Hallie was thrilled to be there, mostly because it's the one doctors' visit where we happily release her from the confines of her stroller and let her race about on the floor like the whirling dervish that she is. Even better, she gets to play with a whole new set of toys with what must seem like abandon to her and no one even minds much if she puts stuff in her mouth, makes big noise, and tosses stuff about. In fact, all of the above and more are encouraged.

The easy stuff first: Hallie has put on weight again and is now a whopping 9640 grams, or just a bit above 21 lbs. She is also very tall: 30.5 inches. This places her at the 90th percentile for height on the adjusted chart and at the 50th or so for her actual age. She's around the 50th percentile for her adjusted age and 25th percentile for her actual age for weight. We forgot to note what her head circumference is, but it seems on target.

The only problem we have with these follow up visits is that we are never told how Hallie does on these tests, so we're kind of left guessing. We know that Katie was quite impressed by how stable Hallie was on her feet and how well she got up and down from a standing position. We also know that she was delighted by Hallie's 'walking.' Our munchkin only ambulated while holding Katie's hands, but I guess she looked pretty good doing it. (On that note: since Sunday, Sharon has managed to coax Hallie into independent steps numerous times and we always applaud, but Hallie has decided that, despite the positive reinforcement, she doesn't want to walk on her own quite yet. Indeed, she has responded to our efforts by pretending that she cannot stand on her legs. Very frustrating, but we know that she's just trying to exasperate us and so we're trying not to let her reluctance get to us) and we also know that Katie thought Hallie was a great crawler, amazingly adept at shell games (she kept choosing the correct hand when Katie hid toys from her). We were also amazed that Katie thought that Hallie's 'talking' was impressive. From what our Speech Therapist, Jenny, said last week, we know that Hallie's delayed in terms of her speech but at least she's made sufficient progress to fool the experts.

Where we are most concerned is in the arena of Hallie's fine motor skills. Hallie knows which puzzle piece goes where and can sort of get the piece in the vicinity of where it should be, but she has trouble manipulating pieces into place. She also knows what 'on' means but she has a lot of difficulty actually placing one block or object on top of another. And, while she can sometimes pick familiar objects out in books by looking at them, she is (at best) very inconsistent about pointing at objects. Finally, she has pretty much zero idea about what to do with a crayon (other than eat and throw it). This last shortcoming is probably our fault: since Hallie eats paper, we've never given her paper and crayons to draw. In all cases, if Hallie determines that we are asking her to do something that she cannot do, her response is to throw whatever the object is that we are asking her to manipulate and to move on to something else. I guess that the upside is that Hallie has developed a very, very good right throwing arm. Even if she never learns how to do a puzzle, perhaps she can be a major league pitcher.

Anyway, when we asked Katie about how Hallie did, she hedged a bit but said that she could work on her fine motor skills. We don't know what level she's at, but it kind of doesn't matter. What we're planning on doing is this: we're paring down the number of toys that she has access to at any one moment so that we can get her to focus more effectively. We'll leave out two of her megablocks, two of her bristle blocks, her puzzles and books, and a few other choice objects. Perhaps this will help Hallie from getting too much in the way of sensory overload and help her refine some of her emergent skills.

The upshot is that everyone is pretty impressed with how Hallie is doing. The neonatologists remember all too well how small Hallie was at birth (590 grams) and how fragile her condition was. They are thrilled that she climbs all over them now (and that she doesn't remember that they were the ones who intubated her numerous times, ordered those heel sticks, drew her CSF when she was suspected of having a fungal meningitis. They were not very hopeful about our twins' outcome (read: they were downright pessimistic and presented us with all of the statistics that are relevant to babies born at 23 weeks). They have no idea, and neither do we, why Hallie is doing so well and why we lost Olivia. They have no way of predicting which babies will thrive and which will face difficulties, let alone which kind of difficulties these babies will face. Nor do they purport to play God, or any other omniscient or omnipotent higher being. I've talked at length with Hallie's doctors about such matters, and most of the time they harbor serious ethical doubts about their jobs, even as they work hard to do the best possible jobs that they can do. I appreciate their candor and I know where they are coming from. So much of their field is creative and forces them to think on their feet, but they understand quite well that the babies whom they are treating are not guinea pigs or lab rats and that the actions that they take--or choose not to take--have real life implications. They also know that they don't always know everything.

Thinking Outside the Box: When Solving Turns into Managing

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

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

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

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

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

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

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

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

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



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


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

Totally Tubular

No pics tonight...too tired for the frills of blogging. I just wanted to report that, two heavy duty antibiotics, much gut retching and vomiting, and three visits to the pediatrician (we saw half the practice) within five days later, we've decided that we're discontinuing the antibiotics and going the ear tube route. We're hoping that our pediatrician's excellent rolodex can work its speedy magic and get us into one of the CHOP ENTs before the end of the month. The tubes will allow Hallie's ears to drain better, will hopefully stave off not only infections but also hearing loss, and keep our kid well until she outgrows this particular (unattractive) life stage.

Meanwhile, a couple of positive things to report: Hallie had her one-year follow up with the pediatric opthamologist yesterday and, while she's a lot less far-sighted than she was in December (she was positive 2 back then and is positive .5 now), and hence a lot less far sighted than typical babies her age, the doctors are not particularly concerned and feel that if she was slated for severe myopia, we'd already see a much quicker progression to nearsightedness. She will probably need glasses and she has inherited Sharon's astigmatism, but we got really lucky with this one -- Hallie was a blink of an eye (so to speak) away from laser surgery last October.

On another positive note, it seems that the scale's reading on Saturday was off by a lot. On Monday, Hallie weighed 9350 grams (20 lbs. 10 ounces) and today she weighed 9470 or so (20 lbs 14 ounces). We're not sure how she's managed to gain weight through all of this, but we'll take it.

On a slightly less positive note, it appears that Hallie does have an issue with slow gastric motility. Last Friday, Hallie had a milk scan (it was performed by the nuclear medicine division folks at CHOP, whose notion of bedside manner is strapping your kid down to a machine with surgical tape. How pleasant). The whole process was less than fun; thank goodness I checked the website to find out more about the procedure and realized that they had DVD players in the room. I thought bringing along our Sesame Street DVDs would help Hallie consume the requisite 2 ounces in the stipulated 10 minutes (amazingly enough she did), but didn't realize what a lifesaver these would be during the 1 hour and 5 minutes (but who's counting?) we had to immobilize our wiggly worm. Anyway, results were back today and, guess what? The kid has reflux (say it isn't so!) and delayed gastric emptying. We absolutely refuse to entertain the idea of Reglan, which crosses the blood/brain barrier, and would only possibly consider Bethanecol if our Paterson feeding team approves. Meanwhile, a nice high fiber diet with plenty of juice and mylanta is what we're aiming for. Let's hope it helps. And let's hope that being upright and older and bigger will help Hallie outgrow the entire panoply of GI tract issues she has. That cannot come too soon for us!

Anyway, in case you are keeping track, we saw medical professionals on Friday (milk scan), Saturday (ped), Monday (ped), Tuesday (opthamologist), Wednesday (ped). Tomorrow Hallie visits the feeding clinic at St. Josephs. And if all goes well, we then have a three day break until our NICU follow up visit on Monday. So, best case scenario (no more ped or God help us ER visits), we'll have been to the doctor 7 times in 11 days. And this does not count our first Synagis appointment next Wednesday. That'll bring us to 8 visits in 13 days. I think this may be some sort of record.

Is there a doctor in the house...or one step forward, two steps back

Let's start with the good news: even with all of our insurance issues related to Sharon being between jobs and between coverage (her new coverage doesn't kick in until February, and to call my coverage substandard doesn't even begin to convey the feelings I have about it), we were still able to get Hallie's synagis shots covered this year by Americhoice (the medicaid gap coverage that she has for being so extremely low birth weight). Apparently, they have a very slim window of opportunity for qualifying for Synagis and somehow the stars aligned in such a way as to allow us to avail ourselves of it. Thank goodness for small (and yet very expensive) favors. Given Hallie's weight (more on this in a sec), she would need two vials and the cost would be around 2000 a shot; the total of 6 or 7 shots would set us back around 12K-14K. We earn too much to qualify for any kind of break from the company that makes the vaccine (it's not a true vaccine but a live antibody that is injected against RSV, which causes a common cold in most kids and can land our babes on a vent, or much, much worse). But we also earn too little to pay for it out of pocket. Insurance companies set guidelines for providing these vaccines to micropreemies and others with compromised lung function and a variety of disabilities that are established upon a risk management model; alas, Hallie falls into the high risk category: very low birth weight (under 1500 grams---she was 590 at birth) and long-term demonstrated BPD (bronchopulmonary dysplasia) or CLD (Chronic lung disease)---she was on Oxygen officially into June and is still on an emergency bronchodilator and daily inhaled steroids. These kids cost insurance companies far more whenver even a moderate hospital stay happens (let alone a PICU stay on a vent) than the 12-14K they need to shell out for the Synagis (and they probably get a discount that consumers paying out of pocket don't get).

Anyway, that's the good news.

The bad news: can't say we weren't warned (should've heeded our good virtual friend Laura at Adventures in juggling when she said that we need to keep Hallie out of the ballpit and any other confined space where other potentially snotty kids might play. Alas, Hallie has presented with yet another ear infection. The sort of good news is that this has not kept her from talking---she has new sounds slipping in on a daily basis. The bad news is that the confestion is back, and so is the vomiting, and she seems to do very poorly on her current antibiotic (Augmentin): this has her retching and violently vomiting up nearly all solids. It's pathetic, and painful to watch, and troublesome because...

...we have more bad news: for the first time since May, Hallie has actually dropped a substantial amount of weight. She weighed in at 20 lbs. 13 ounces at the St. Joseph's feeding clinic two weeks ago and 20 lbs. 5 ounces at the ped's office on Saturday. Even if we take into account that the feeding clinic's scale (which dates back to the era of early mesopotamia and still uses weights to balance) runs heavy (which we believe it does), it doesn't run *that* heavy. And over two weeks have elapsed since our visit to Paterson and it is clear that Hallie is dropping weight. This may be somewhat related to increased mobility:



More likely, it is related to Sharon backing off on the middle of the night feed, which is an altogether healthy thing. Hallie simply cannot take in enough calories in "solids" (who am I kidding? What solids? Solids in our world are the consistency of Stage 2 Gerber baby food. That's more like soup than it is like sandwich, and anyone who has ever been on a weight reduction diet knows that soup is a very good thing to eat and sandwich, not so much). My unfortunate realization is that, unless we can get Hallie eating ham and cheese sandwiches (a favorite of her mommy's, and my apologies to anyone out there who respects the laws of kashrut), we are going to be facing a seriously steep upward battle from here on in. Increased mobility + limited intake is a recipe for failure to thrive. So, as soon as we lick this cold, we need to get some more of that delicious Mediterranee Liberte 8% fat (260 calories per 6 ounces, and we're counting) yogurt in the kid, and we need to try to work up to more string cheese and some seriously mushy mac n cheese with added cheddar. Perhaps we can add in a key lime pie (deceptively light, really fattening) or cheesecake. Corn and butternut squash just ain't gonna cut it.

The problem is, though, that NOTHING is staying in our kiddo at all these days, other than a small amount of Nutren and we need to reverse this real soon. No doubt Hallie's reflux meds are slowing down her gastric emptying (we had a milk scan to visualize this on Friday), but did she have to be so concerned with the situation that she decided to empty the contents of her stomach in the OTHER direction? Seriously, though, we do think that this is related to the Augmentin and not to some other problem, and once this gets under control, we need to step up the calories in the food that she consumes during the day and hope that she does not go to college eating only butternut squash and sweet potato puree.

Meanwhile, we're up late feeding her in her sleep again (Sharon does the feeding, and I do the middle of the night blogging). This is not sustainable in the long run. Hopefully we'll have a new plan (or a new antibiotic) tomorrow or, as the Count says in one of my favorite counting videos (The Batty Bat), "Come, we try again..." (needs to be elocuted in a moderately Transylvanian acccent).

On that note, I think I need to call it a night (or an early morning).

Our Independent Little Girl

Hallie has been getting quite a bit of an independent streak. Lately, she's been demanding to see Karina A LOT. If we are outside and pass by Karina's house (which, effectively, we do every time we enter or exit since we share a stoop with Mark, Vanessa, and Karina), Hallie will call out and/or stare wistfully at Karina's door. And if she senses that Karina is home or that it's time to go for a visit---the girls often see each other for at least a couple of hours on most nights---she'll get up and go to the door and asked to be let out:





It's very cute in a mildly pathetic way.

Hallie has also taken to throwing mild (relatively---I suspect that they can get worse) tantrums or bursting into tears when something is upsetting to her (like being deprived of eating carpet fuzz). She switches moods very quickly from happy/busy to utterly inconsolable. Here's a small piece of evidence of this from tonight. In the first picture, she is happily reading the new book that Aunt Ney and Aunt Kim got her (it's a Halloween touch and feel book and it's quite excellent---thank you Aunties!---but we need to trim Hallie's nails or we will go insane from the sound of her scratching the scratchy pirate beard):



A moment later, we have an academy award winning melodramatic moment:


But the biggest evidence of impending independence is the following:

Today, Jenny, Hallie's speech therapist, and I had Hallie take a collective total of 4 steps between the two of us this afternoon. Jenny figured that, since Amy, Hallie's OT, got to hear Hallie's first babble, it was only fair that Jenny would get to experience Hallie's first steps. It's funny: Hallie is now really quite well balanced and has even mostly relinquished her odd crawl/scoot (on one knee crawling, and on one leg pulling herself along). Her trunk control must be a lot better (needless to say, it's all the practical application of string theory around here). Anyway, the biggest impediment to Hallie's walking is Hallie's psyche. To paraphrase FDR, she really does have nothing to fear but fear itself. We might have a lot to fear once Hallie is up and running, but that's another story.

We obviously did not get the 'walking' on video but we did finally manage to get a video of Hallie 'walking' (with support) and 'talking' (well, babbling) during one of her attempts to be let out to see Karina. Enjoy!

Happy One-Year Homecoming Anniversary

October is a month full of milestones. It's hard to believe it, but one year ago today, Sharon and I brought Hallie home with us for the very first time. We thought that she was HUGE at the time and were amazed at how much she'd grown in the past few weeks. She was a whopping 5 lbs. 11 ounces upon her release from the ICN. We were nervous about some aspects of this new chapter of our lives: would she be OK on home oxygen and would we ever get rid of all that oxygen paraphenalia? would we be able to respond to alarms and perform CPR if need be? would she stay well? how would her eating be? and could we possibly survive without the built in support network that the nurses who had become our friends provided to us? But mostly we were thrilled to have our big girl home.

Looking back on things, of course, we realize that she was so tiny and fragile and that she had a whole lot more growing to do. It's amazing to think that she's put on more than 15 lbs since living with us; that she is not only off of the oxygen and no longer in need of canula retaping (thank goodness) but she is also mobile and alert and engaged and even eating better than she used to and beginning to vocalize.

A lot has happened in this past year and, alas, I don't have the energy for a full-scale photo retrospective. But here's a few shots of our girl a day or two after we brought her home with us:






She sort of resembles the new Hallie, but just barely (and only if you disregard all of that pink tape and the fact that she' wearing a hat, which is something that we're convinced she will refuse to do even in the thick of winter now that she's a big girl with a strong will.

Here are a few shots we took of toddler Hallie tonight:



What a belly! The shirt she's wearing was put on during a quick post-emesis change and was the only one hanging out at the bottom of the diaper bag. Clearly it doesn't fit her anymore, but it does give her a sort of teeny bopper look.

Check out all of Hallie's teeth--she's got 8 big ones and who knows how many coming in:


Here she's doing a Mick Jagger impression. She seems to be getting a lot of satisfaction:


Finally, I've called this one "string theory." The theory is that Hallie loves strings so much that if we get her to walk while holding onto one, she'll forget that she's pretty much balancing on her own and just begin walking. It's not a bad theory (Sharon and Vanessa receive the credit for devising it) and it just might work. At least it sure seems that way:


Anyway, Hallie Rose, you've come a long way baby, and your mommies are thrilled to have you home for a whole year!

It's the Pits...

The IKEA ball pits, that is.

Yes, I know that it's already verging on RSV season and that we're probably taking a bit of a chance here, but yesterday Hallie had a ton of fun playing in the blueberry patch ball pit at IKEA while Aunt Laura shopped for a new bed for cousin Sarah. Hallie found the whole IKEA experience to be a lot of fun. What's not to love--bright colors, kid-friendly patterns and textures, and made up names for things. It's a kid's paradise. Add that to the adult potential for retail therapy and we have a new fun place to play this fall. Of course we'll be less loved when we show up with a big can of lysol spray, but hey...

Here's Hallie with cousin Adam:


And yes, she looks overwhelmed, but rest assured that she had a fun time.


I'll try to upload pics of Hallie on the carousel at Franklin Square, a very fun new park in Center City Philly, that I took with my phone later on today, provided that I can figure out how to mail these to myself. We'll be taking her, and hopefully Karina, back there soon for their Hallowe'en festivities. We're hoping to coax our kidlet into her piglet costume. She'll be fine with the plush fabric of the costume but I cannot imagine getting her to wear the pig hood willingly!

Who Are You? Who? Who?

OK, totally gratuitious post, but I have to admit that adding the map in the corner of Hallie's blog (thank you, Heidi! I totally borrowed this from your site) has piqued my curiosity...I can conjure up identities for some of you based on your location, but I've noticed that, since putting up the map, people have been visiting us from the UK, Denmark, Finland, France, Australia, Buenos Aires, Peru, Mexico, not to mention a fair portion of our friendly neighbor to the north (happy belated Thanksgiving Day, Canadians!) and a large portion of the US. (Sorry if I've omitted any exotic or even mundane locations...)

I promise to blog about Hallie later on today, or tomorrow at the latest, but in the meantime, can you readers delurk for a sec and tell me who you are and how you got here? I'm sure Hallie'd love to know!

Let Them Eat Cake...the (Adjusted) Birthday Suit Edition

Last night, we celebrated Hallie's first adjusted birthday. I don't know whether we will continue to do this, but this time around, we decided to do something nice and low-key to celebrate the fact that Hallie is nearing her entry into toddlerhood.

Hallie did seem to enjoy this party more fully than she enjoyed her birthday party back in June. Maybe it was the size of the celebration, which consisted of 8 adults, including our commune--Mark and Vanessa, and Josh and Nancie, who was also celebrating her birthday--and Renee and Kim, and 2 kids (Karina and Ethan), and its scale/location (at home). Maybe it was the fact that she is now truly acting like a near-toddler (more active, mobile, and alert) and maybe it was that she was actually feeling well (back in June she was in the throes of what would end up being a 14 week long illness/sinus infection) that made the difference. It certainly helped that she did not throw up three times before her party (she did this back in June; and to put things into further perspective, that party was held at 1pm and this one at 8:30pm).



In any event, Hallie had a nice day with Ami, her nanny, yesterday and played hard and ate well. (Aside: we're finding it very odd to think that Hallie has this whole other life of going to cafes and such that we are not privy to... It makes us aware of how lucky we were to have been able to spend the entire first year of Hallie's life at home with her. Other than a few dinners out, the ill-fated trip to Las Vegas, and one minor surgical procedure that I underwent, one or the other of us was with our girl 24 hours a day during that first year home. Most people don't get to do this, and so, even through all of the illnesses and vomit and oxygen and the like, we count ourselves as lucky. This all changes in a couple of weeks when Sharon goes back to work full time, but I am sure that this will open a whole new chapter in our lives as a family).

It was great to see Hallie at the end of the day yesterday. Even if she couldn't keep our Phitin' Phils' from sinking deeper into a playoffs hole, she could lift my mood. When I walked in the door yesterday evening, Hallie let out a squeal and demanded that I pick her up and hug her. She gave me the tightest, best hugs I have ever felt and nuzzled my neck and made these very happy cooing noises and, from what Sharon and Ami reported, flashed huge smiles. She then demanded that I read her her favorite books (the Baby Face book---the second copy I recently purchased after she ripped up the first one--and the Oh David! board book). And, instead of just throwing them at me or even bringing them to me and opening them suggestively, she actually signed "more" over and over when she wanted another reading. Something has clicked with Hallie in terms of language and communication this past week, and we are all really proud of her. Her Speech Therapist, Jenny, was actually so happy about this that she began to cry. She admitted to us the other night that she was having trouble sleeping because she was so worried about Hallie's speech (or lack thereof) and that she was considering not having us wait until December to see the SLPs at CHOP to get Hallie officially diagnosed with apraxia and to figure out whether this was some alternative approach we might take to Hallie's speech. That's all off of the table now, which is a relief to us, as well. Yes, Hallie is speech delayed, but it seems to be a delay and not a disorder that affects motor processing and might be indicative of some larger neurological problem (there's the specter of Hallie's IVH---it was a small one, but still head bleeds are worrisome). We don't really know how quickly Hallie's speech will progress, but Jenny's point is that we're seeing progress.

Anyway, while I was playing with Hallie, I told her that she was going to be having a party that night and that her friend Karina was going to be coming over. As soon as she heard Karina's name, Hallie sped-crawled over to the door to our foyer, pulled to stand, began to bang on it, and started babbling "da, da, daddy, da, da" over and over. It was so cute! She knew that her friend Karina comes to visit her by coming through that door (or that, conversely, she needs to open the door to leave the house to go next door to Karina's). So I decided to indulge Hallie and picked her up and take her next door to see Karina. Karina was still getting ready for Hallie's party but Vanessa let us in, and as soon as Karina heard that Hallie was over, she made Lindsey, her nanny, bring her downstairs. The two girls squealed in delight (it was as if they hadn't seen each other for weeks, not hours) and hugged and kissed. Hallie, however, still needed to eat her dinner before everyone else came over (feeding her in front of anyone but Elmo and co. is a bit of a disaster), so we needed to bring her back home. As soon as we walked out the door, Hallie began to bawl...Quite the drama queen, our girl, and totally an at-risk child where being spoiled is concerned.

Sharon did manage to get dinner into Hallie and got her dressed in the lovely dress that my mom got her for her first birthday:


In this second shot, Hallie is holding her bowl and spoon. But note: they are empty. Self feeding with utensils is quite a ways off for us:


A little bit later, everyone came over for pizza and cake. The kids had a lot of fun and the girls were inseparable all night.


And after a nice play, it was time for cake:



As with everything else related to this adjusted birthday party, Hallie also seemed to enjoy her cake a whole lot more. I am sure that Aunt Ellen (Hallie's primary nurse) will attribute it to this being a chocolate cake (Uncle Mark would agree), but I think that she's just more into food than she ever was before. She smeared cake all over herself (we had stripped her and Karina down to their diapers) and even managed to get a bite or two into her mouth.




Notice how nicely Karina holds her fork. Now those are some fine fine motor skills!

Here's a silly video (not the best one I've ever taken, admittedly) of Hallie smearing herself with cake and perhaps getting a bite or two in her mouth:


And, of course, no birthday is complete without some new Sesame DVDs, including the Country one I have been secretly coveting. Thank you, Uncle Mark, Aunt Vanessa, and Karina for enhancing our dining pleasure!

Happy Adjusted First Birthday/Playdates for Hallie

I'm going to try to post separately about this later on, but knowing how hard it is to get even one post written a day (who am I kidding? A week), I didn't want to neglect to mention that today is Hallie's first corrected birthday. Today is the day that Sharon was due to have the twins; this being a twin pregnancy, we did not think that she'd be able to carry them that long, so our goal was anything past Labor Day. Needless to say, we didn't even make it to the 4th of July. So today carries with it more than a tinge of the bittersweet. On the one hand, it signifies more of what wasn't---a normal twin pregnancy with a typical twin birth and raising two sweet little girls who would each be turning one just around now and who would not be subjected to poking, prodding, and lots of early intervention---than what was. On the other hand, we rely on this benchmark right now as a gauge for Hallie's development. I know that, over time, as we stop correcting we'll probably stop thinking about this particular milestone. But today, even as we think of what wasn't and what we lost, we will still celeberate our funny little girl who is acting like a toddler more and more each day. And for us, who missed out on her babyhood and instead experienced her micropreemiehood, this is a good thing.

So Happy Adjusted Birthday, my funny little girl! Your mommy and I love you tremendously!
****

Onto another topic altogether: Hallie's playdates. Hallie has been a social butterfly recently. On Monday she got a visit from her friend Maya and Maya's mommy and daddy, Rachel and Dan. These are our friends from the ICN--Maya and her sister Elana were born a month before our girls and Hallie and Maya share the bond of being surviving twins. We bid adieu to our friends back in August when they moved to San Diego (where Dan is from) but they came East (unfortunately due to an illness in the family) and stopped in on Monday to see us. The girls had a great time. Hallie was pretty aggressive (not in a mean way, just in a not-aware-of-her-own-strength way) with Maya; I think she's used to patting Ethan and Karina and grabbing at them and isn't quite aware that Maya is a lot smaller than Ethan and Karina are. Hallie started babbling and shouting furiously the second Maya came into the room and then chased her, patted her, grabbed at her hair, and was clearly thrilled to see her old pal. Maya warmed up to Hallie after a few minutes (and after we kept cautioning Hallie to be 'gentle, gentle') and then began to return the shrieks and pats. The two kids were a study of babies in motion. So, unlike every other time we've gotten together, it was impossible to get a decent shot of the two of them looking in the same direction (at the camera) and holding still. This was the best I could do, and I am hoping that Rachel and Dan got better shots.



This second image is more indicative of the kind of pictures I was able to take:


While Maya was here, we decided to see if Hallie would tolerate a real food snack: we had been giving her very tiny bites of very mushy mozarella cheese with some success, and this time we decided to attempt a piece of considerably harder string cheese. And, guess what, it worked! We did break off the cheese for her into small bites, but nowhere near as small as the bites of cheese that we had been giving her. Hallie seemed to like the cheese a lot--she takes after Sharon but has a much broader palate where cheese is concerned. Sharon will eat cheddar (mostly), swiss (with ham on sandwiches), blue cheese (but only in dressing), and occasionally a piece of smoked gouda or manchego. Hallie takes after me, and Uncle Mark (Karina's daddy) and is an equal opportunity cheese eater. We are grateful for the fact that her eating issues are not food aversions, but swallowing problems. And, to come back to our experiment, it seems that having 8 teeth instead of 2 has really helped with this. We will go very slow, but I think that progress is possible and that Hallie might not have to have a smoothie on her first date (or take that smoothie while sleeping, either...We were trying to give Hallie her thickened nutren from an open cup but the little bugger had learned how to avert her mouth just in time for us to spill the formula everywhere. This was disheartening since she had done so well with this approach for a whole day and a half. Anyway, in a fit of desperation yesterday (Hallie refused her second nap and had drunk all of 5 ounces of nutren during the course of the day), Sharon tried the Honey Bear straw cup I had recently purchased (we own all sorts of speech and feeding therapy devices; I keep hoping one of them works and it at least keeps me feeling like I am doing something. And, guess what, it worked? So now we are going to try to give her formula this way AWAKE and see if we can't start getting her to do all of her own sucking on the straw (and let back pressure on squeezing the bear). We hope this works beyond just this first day, but so far, so good.



Yesterday, Hallie had fun with mommy and was visited by our friend Sheila, who brought over yet more excellent hand me downs from Alex (This has been the source of most of Hallie's wonderful wardrobe; Thank you Sheila!). Hallie did the 'more' sign for Sheila when she wanted to have her book read to her again; apparently, she can do this with other people and not us because shrieking and throwing the book at us seems to work where her mommies are concerned. We'll try to teach this out of her since throwing books and shrieking does not make for an attractive toddler.

Then, later on in the day, our neighbor Gianna watched Hallie for an hour while Sharon was on an interview and I was not yet home. They had a lot of fun together.

And, finally, we had an impromptu visit from Aunt Vanessa and Karina last night (they are golf widow and golf orphan respectively). This really got Hallie babbling and led to the articulation of all sorts of jargon from Karina (she really does sound like she is talking, and she thinks that what she is saying has meaning, and I imagine it DOES have meaning for her; it's just that I cannot understand it. But I do think that it's very cute). Hallie and Karina had a blast together, as usual, and were even more physical with one another than typical. Here's a great shot of Karina climbing on Hallie:



And here's a lovely shot of them wrestling. Hallie is the orange blob peeking out:


And, finally, we have a shot of champion Hallie. Doesn't she look chubby? And this is one of our favorite onesies---largely because it expresses a very dominant sentiment around here.


(*in case the print is too small, the shirt says "Caution: May Cause Sleepless Nights"---boy is that an understatement. And, yes, that is a vomit stain on the shirt. Hallie ate dinner nicely but then chomped down on some Pirates Booty and vomited up a bit of her nutren. Not too much, though, and she had taken it while awake so we think of it as 'free food')

It's the Playoffs, Baby!

Hallie wore her team colors proudly today. As many of you baseball Phanatics know, today was the last day of the regular season for the Philadelphia Phillies and three or four weeks ago, those of us who root for the beleaguered home team were ready to hang up our cleats and hope for a better season next April. Not Jimmy Rollins (who predicted a post-season back in January) and not Hallie.

We got our girl all decked out in her red-and-blue and took her for a ride in the new similarly colored Maclaren Triumph this afternoon just as the Phils were up around 4-1. By the time our ride was over, we had beaten the Nationals 6-1 and had miraculously pulled an NL East championship out of the hat.

Hallie celebrated by giving her new baby doll a big hug and kiss. We think that it's totally cute that she loves her baby as much as she does (she was even patting it and rocking it today):



Here's Hallie with her new goofy full-of-beans look:



Needless to say, our girl is not going to let this one get away!



And, in other Hallie news, babbling----real babbling---has begun in earnest and she now proudly says "Ga, Ga, Ga" and mimics us when we do, too. I know that sounds like a small milestone, but for us, it's as large as a milestone as, say, the NL East title is for the Phils.

Next week, maybe Hallie can work some magic for our forlorn Eagles!