How Old is Hallie?

Lilypie Fifth Birthday tickers

How Old is Lea?

Lilypie Second Birthday tickers

Monday, June 29, 2009


Well it seems that Lea isn't going to have any difficulty in the food department!

Posted by Picasa

While she loved her apples and rice cereal so much that she grabbed the spoon out of Sharon's hand and started to feed herself, she was even more eager to snatch pizza from Sharon's plate:

Posted by Picasa

Now if we could only get the teething thing under control, we'd be set. The last several nights, Lea was inconsolable between midnight and 1:00am. At first, I believed it was me and the fact that I lacked what she really wanted and that she'd be okay as long as she had mommy (and her milk) available at night. Last night we confirmed that nothing and no one really could make her feel any better. Poor kid! But hopefully the teeth will come in soon and we'll get a reprieve.

Tuesday, June 23, 2009

Our Girls are Holding Their Own

Posted by Picasa

Here are some cute shots that Sharon took of Lea this week. As you can tell, the little one is developing quite a personality.

Our little Lea is becoming such a big girl right before our eyes. It's amazing how much more aware and interested she's become in the world around her over the past few weeks. And it's equally amazing how much new stuff she's doing, too.

Lately, she's been holding her own bottle on a fairly frequent basis:

Posted by Picasa

And she's developed a very earnest interest in all of her toys.  She bats at them, swats at them, grabs them with her hands and feet, uses them to help her roll over, and has begun to mouth some of them.

Posted by Picasa

She has also discovered that her fingers taste awfully delicious. No doubt this is related to teething (which has also wreaked havoc with her power naps).

But perhaps the most exciting development (at least for us) is that Lea has begun to eat rice cereal and LOVES it. This is not unexpected, given how well Lea has taken to the bottle, but it is a great relief for us to have a baby in the house who is excited about getting into her high chair at the table and actually leans into and opens her mouth for the next bite.

Posted by Picasa

Posted by Picasa

Lea also adores her new exersaucer (which she inherited from her older friend, Taylor, Aunties Renee and Kim's little girl.

Posted by Picasa

Of course, it's a bit of a challenge keeping Hallie out of it; between this and her sudden desire to spend time in Lea's crib, it's pretty clear that Hallie is reminiscing about her babyhood.

Posted by Picasa

And, speaking of holding her own, Hallie is doing a pretty good job of it right now, too. After a pretty rough week or two, wher her eating really dropped off and Hallie became scattered and less focused (so much so that I began to worry about regression at the very least and whether her developmental ped shouldn't have diagnosed her with PDD-NOS at the outset), Hallie had a pretty tremendous day yesterday. I really began to see her put things together in a new and improved way.

She's been doing some real pretend play that's exciting to watch. Here are a few recent examples: she loves playing with these Playmobil characters and has regularly paired them off and had them hug one another for a while now but yesterday she had them call one another 'friend.' She also gave her toy banjo to the Count (from Sesame Street) and had him play it, and then trade it in for a drum and drumsticks. Later on, she began to fly her airplane around the room and stated, "I fly airplane!". This morphed into her pretending to be a bird (flying and saying "tweet, tweet") and then riding a bicycle and driving a toy car around the room (which she narrated with "I drive my race car!"). Hallie also made something to eat for us in her play kitchen and fed Lea (whom she has watched eat, so she knows it's now time to feed her and not just try to put a bottle or binky back into her mouth) and me some of her food; declared a tea party during her dinner time and provided both Sharon and me with cups from which to drink (into which she poured out some tea from her teapot) and insisted on shaking Lea's hand (telling her "we shaking hands!"). Add this to other stuff she's been doing (pretending to be the Count by putting Sharon's jacket over her head and saying "I be the Count! One, two, three....Ah...Ah...Ah!") and lots of singing (she knows all the words to "Wheels on the Bus", "Itsy Bitsy Spider", "Kookabura", and the theme songs to Barney, Caillou, and Sesame Street and, for a kid with a paralyzed vocal cord, has a pretty good, if soft, voice) and I think it's safe to say that we are having a developmental explosion around here. She had a great time showing off her knowledge of every kids' song when her new Special Instructor, Anne, came to visit the house yesterday.

That isn't to say that there won't be regressions (Sharon tried to remind me of this last week during my lowest moments and, naturally, I was resistant to listening, but of course she is right on target, as usual). Nor does this mean that Hallie will stop throwing her toys (she still likes to dump; now she likes to announce it, though by saying "I dump toys!" with a certain note of glee in her voice). But it is nice to know what's going on in Hallie's head (easier now that she is beginning to tell us this stuff) and that what we're seeing has structure, organization, and meaning for her. Of course, I would have preferred it had Hallie not decided to wake up in the middle of the night again last night (Sharon took the 3:15 to 5:15am shift and I've been up ever since then. Hallie drank a bottle, ate breakfast, and was asleep by 8am. I am still awake. Sigh).

Anyway, on that note, time to start my day. Double sigh. And triple yawn.

Here's a few recent shots of our big three year old.

In this picture, Hallie's showing Sharon the letter Q and saying: "Q is for Quack"

And in this picture, Hallie's donned all of her eating safety gear for a snack with us at the table:

Posted by Picasa

It's great that she's been asking to join us at mealtimes in the big chair at the table (which is the one we use for Lea; I strongly suspect that Lea's use of the chair, which was Hallie's first feeding chair, has suddenly made the object attractive to her). But mealtimes remain a pretty stressful thing around these here parts and we seem to be back to the horrific eating patterns again, after a brief break of last week when she ate pretty well and quite happily. Even periactin isn't helping too much right now. It's all behavioral. We've decided for now to just time the meals at 45 minutes and if that time elapses and Hallie's still not done, we're taking away the food. Hopefully hunger will get the best of her. And we do have an appointment with the CHOP feeding team tomorrow. While we've got some reservations given their reputation as adherents of the Kennedy-Krieger approach, we've heard that the psychologist has helped other families in situations like ours and we are hoping that she can give us some advice on how to change our incredibly bad feeding dynamic so that our lives can regain some sense of normalcy (whatever the heck that amounts to) around here.

To end on a happy note, we are now up to 115 vomit-free days this year.

Friday, June 19, 2009

Partying with Hallie

First off, let me just say that we did not forget to celebrate Hallie's birthday. We are merely running a bit behind where blogging about it is concerned. I'd like to think that this is solely because life got in the way of blogging again (and it has; between preparing for Hallie's party, actually celebrating the big day, and then following it up with a stellar little sleepover by our friends Anne and Eliza Grace, who beat us to the blogging punch and already have an update out about this, it's been quite busy around here. But the other, less fun reason for our conspicuous lack of birthday blogging has to do with Hallie's latest eating strike, which has, until today, had us adults (me, Sharon, and the fearless Nadia) feeding Hallie for way too much of the day, which leaves far too little of the day (or night) left for blogging. Hopefully we have put an end to this, at least for the meanwhile, by putting Hallie back on periactin (an antihistamine which also happens to be an appetite stimulant), so we've been granted some reprieve. At least for now. (And for those of you still keeping count, we're now up to 112 spew-free days).

Birthday festivities got off to an early start when Hallie's first friend and NICU primary nurse, Ellen, popped by with three balloon--one in honor of Hallie's birthday, a second in memory of Olivia, and a third for Lea--and some cool gifts for our girl, including a DVD of Mary Poppins, which I am sure Hallie will really enjoy.

The kids really enjoyed the balloons and Hallie even let Lea play with hers for some time:

Posted by Picasa

Of course, Hallie quickly commandeered all three of the balloons (and hence deprived Lea of her balloon-gazing; I am sure that the day is not far off when Lea defends herself from toy-and-amusement-snatching perpetrated by her older sister, but right now Hallie definitely has the upper hand in things). We did little on the actual day of Hallie and Olivia's birth, but we did have a grand time on the weekend. Hallie's party was held at a local kids' gym and most of her favorite people were able to make it to the festivities (even us, but just barely: while the car was all packed up with sodas and goodie bags by ten o'clock, it took longer than average to feed Hallie her breakfast. On top of this, Whole Foods' pizza chef forgot to make her the goat mozzarella pizza that I had commissioned, so all of us just barely made it to our kid's event. Alas, this is par for the course around here, but happily, it wasn't a big deal and everything else went off without a hitch).

The unfortunate thing about gym parties, however, and particularly those involving trampolines, is that the subjects which us parental types are trying to capture on digital media, are constantly in motion. So many of the shots I got with our camera (which doesn't handle indoor photography as well as I'd like it to even under the best circumstances) were none too fabulous.

Happily, Anne did get in some good shots. I managed to figure out how to copy the entire album into blogging from her Shutterfly account, but not individual pictures. If anyone remotely more tech-savvy than I am cares to guide me through this process, I'd love to hear how this can be done.

Click here to view these pictures larger

Eliza Grace was one of five micropreemies in attendance that day. Look closely at the slide show and you'll see several pictures of lovely Nina Fox. We were also lucky to have among us three other 23 weekers, Elizabeth and our friends Sydney and Payton, whom we know from the ICN at Pennsylvania Hospital. They were born about five weeks before Hallie and Olivia and their mom, Madaline, helped guide us through the NICU experience back in the old days. Suffice it to say that the micropreemie cohort was decidedly over-represented at our little shin dig, and with good reason.

We were also lucky to have lots of family at the event. Grammy, Aunt Laura, and cousins Sarah, Hannah, and Adam came down to help Hallie celebrate and big brother, Jake, helped introduce Hallie to the mysteries and wonders of being three. Finally, our event was made extra special by our friends: Charlie and Aaron's mom, Sara, who is very very creative, volunteered to make Hallie a lovely giraffe birthday cake that was also allergen-free (and burned herself quite badly in the process). The cake came out great, but Sara's arm is worse for the wear and we hope that it's feeling better now. And we were thrilled that Alex's mom and dad, Sheila and Brett; Sam's mom and dad, Elisabeth and TJ; and Taylor's two moms, Renee and Kim, were there to help Hallie usher in her big-kid status. (Hopefully I've not succumbed to horrible mommy-brain and left anyone out!)

Anyway, like I said, none of the pictures we took are much to write home about but we did get some quasi decent shots.

Here's one of Hallie, Hannah, and Adam on the trampoline:

Posted by Picasa

Hannah and Hallie are doing ring-around the rosy with Eliza Grace in the background:

Posted by Picasa

And here Alex is getting in on the ring-around-the-rosy action:

Posted by Picasa

Basically, Hallie would do ring-around-the-rosy forever if she could. She's really into kids' dance and music routines generally right now (no doubt this is Barney's influence) and I suspect that she'd do pretty well at a dance class (were her schedule to permit this).

No birthday party would be complete without a blowing-out-the-candle event, and we did that twice at Hallie's party last Saturday (mostly because we were too daft to have cameras prepared to capture the event the first time around).

Posted by Picasa

Hallie loved the singing and even managed to help blow out the candles. The practicing we did earlier in the week really helped her understand what was happening and what was expected of her. Of course, she needed no prompting or practicing when the time came to open her numerous presents!

Even Lea got in on the party action: she had a grand time being held by her big little cousins:

Posted by Picasa

Posted by Picasa

Anyway, a grand time was had by all and we continued our celebration with Anne and Eliza Grace, who spent the night. Eliza feasted on the tops of many Whole Food chocolate cupcakes and we had surf and turf, courtesy of our grill. The next day the girls woke up and had a nice bath together and we all headed out to the Please Touch Museum, where the kids ran around, played, and had a great carousel ride.

Posted by Picasa

Posted by Picasa

There's a lot of good stuff happening in Lea's life, too, and she is the subject of my next post (hopefully to be composed some time really soon!)

Tuesday, June 9, 2009

Birthday Countdown

Unbelievably, Hallie will be turning three in two days. I am not sure where the time went (and I am quite frightened that we are now a mere 13 years away from her getting a drivers' permit...if her navigating and safety skills with her toy vehicles are any indication, watch out drivers!)

Anyway, we spent part of Saturday procuring Hallie-friendly food for her birthday bash. If you recall, last year the only thing she could eat that we had at her party was Lesser Evil Potato Sticks in Sea Salt flavor. This year, our shin-dig will feature Oreo cookies, Lays potato chips, watermelon, and pizza (we'll get regular pizzas for the masses and have commissioned a pizza with goat mozzarella from Whole Foods for Hallie so that she can enjoy as much of it as she would like). And our lovely friend, Sara, whose hands are already full (she is a NICU nurse and mom to three-year old Charlie and three-month old Aaron; she makes and sells lovely burp cloths (Keiki cloths) previously mentioned by us on our blog; and is a wonderful photographer who took some gorgeous shots of Lea as a newborn) has volunteered to make Hallie a birthday cake. We're still using allergy-friendly stuff (meaning no egg or cow dairy in it) because we're still not sure how well Hallie responds to those things, but we do know that, at least conceptually, Hallie loves cake. I bet that Sara's beautiful giraffe cake will go over very well with our girl.

Hallie is definitely getting into the birthday spirit. We've been asking her how old she is for a while now and she has consistently responded "two." Lately, we've also been inquiring how old she is going to be and she gleefully retorts: "three!"

Hallie has also finally learned how to blow (sort of...she has blown conventionally by rounding her mouth several times but cannot do this on command. Instead, she bites down on her lower lip and spits out some air. Amazingly, this does the trick and she can extinguish flames of candles that way). We've been practicing the Happy Birthday song and blowing out candles with her all week and she's been doing super at it.

Anyway, we think she's excited about her big day and we're fairly certain that she understands what it entails this time around.

On other Hallie news, she's also doing a whole lot of new fun stuff (some of which makes us really happy and others of which exasperate us no end). In terms of the former, she's been doing a lot of pretend play. On Saturday, while we were in Superfresh buying supplies for Hallie's party, Hallie kept asking for chips (she says, "a big round one!"). We happily indulged her requests and she munched her way up and down the aisles as we tossed stuff into the cart (this was a major improvement over our experience in Toys-R-Us, when she tossed all sorts of random stuff we didn't need and didn't wish to buy her in the cart for us). One of the chips Sharon gave her was more heart-shaped than round, which Hallie pointed out to us immediately and then burst into a chorus of "Love" (by Rachel Coleman, and easily among Hallie's favorite songs). Once the singing was over, she began to feed the chip to her Count plush doll (of Sesame Street fame), who kept saying "yummy, yummy, yummy" as the potato chip crumbled in his mouth. Then, rejuvenated by the snack, Count began to fly (he does, after all, have a cape) and Hallie narrated "Count is flying!" as she made him do so.

Today, she showed off her prowess with verbs while she used her mallet (from her doctors' kit) to bang some imaginary nails into her Melissa and Doug dollhouse. She turned to me and said with pride, "I build a house!"

And, finally, my favorite Hallie-ism of the day: she's been walking around all day saying "I spy with my little eyes..." and then filling in the blank with whatever she sees at the moment. This evening, she looked through the hole of her smiley-shaped potato patty and said "I spy with my little eyes Mama!" There's no question: I was very happy to be spied by her little eyes.

So, yeah, on the eve of three, Hallie is pretend playing and speaking a whole lot more. That's the best birthday present we could imagine receiving from our no-longer-so-little-girl.

Sorry about the lack of pictures, though. I promise to try to take some later in the week. But one last update: we're up to 107 days without vomit. Hallie does seem bored with some of her foods but disinterested (or even hostile about) trying new ones, not to mention drinking her milk (she does, however, like to eat the silicon straws that come with her insulated Thermos bottle, much to our chagrin). But she's been eating well enough and drinking okay enough (marginally) and keeping everything in with no real problem. So we are thankful for that, too.

Saturday, June 6, 2009

Oh, the Places We Have Been

Posted by Picasa

Today is the third anniversary of the night that we showed up in Labor & Delivery with Sharon 4 centimeters dilated and 90% effaced at 23 weeks, even.

The intervening 3 years have taught us so much. Some of these lessons have been good ones, some have been hard ones, and others have been just downright ugly. I think that it's safe to say that Sharon and I have both emerged from this experience changed people---better in some respects, shell-shocked in other respects, and different in all respects.

So, what lessons have we learned and what makes these lessons so important?

First of all, we've learned to appreciate the small things in life in a way that we probably would not have had we not experienced the trauma of extremely premature birth, the loss of a child, and the ongoing issues that Hallie experiences. We take nothing for granted around here. For parents of typical children, it's easy to overlook the small milestones (and sometimes even the bigger ones) because no one really expects anything to go wrong in the developmental process. We, on the other hand, celebrate it all, and all of the milestones we celebrate are hard-won by Hallie, who is by far the strongest and most capable little girl I know. That she successfully negotiated an obstacle course that consisted of six sequential steps (she had to climb up a ramp, jump off, go up and down a set of steps, straddle a bolster, crawl through a tunnel, and jump ten times on the trampoline) at OT the other day with minimal prompting after being shown it once was a major victory for her. That she walked into Home Depot the other day with Sharon to purchase yet another trash can after ours had been stolen for the third time from in front of our house (this time whoever snatched it actually emptied the bags out of trash out of it...I hope they enjoy the lingering diaper smell and that it serves as a constant reminder of their crime) and queried, "Oscar, Oscar, where are you?" is a major victory for us. Hallie teaching herself the rules of tag when she's only seen the game played once (this week, she began running over to us, tapping us, saying "tag you're it," and running away) is a major victory for us. Hallie eating a slice of bacon is a major victory for us. Hallie engaging in pretend play is a major victory for us. And having conversations with Hallie--real conversations about the stuff in which she is interested---well, that one is priceless.

Posted by Picasa

Some parents of typically-developing children have scoffed at us (to our face or behind our backs) for celebrating some of the things that Hallie has done. Some of them have even gone so far as to tell us that they don't think she's actually making any progress at all. Indeed, quite the opposite is true. Indeed, Hallie's progress over the past five months, and most significantly over the past six weeks, has been nothing short of remarkable. As Aunt Laura, one of the wisest women in our lives, put it recently, "Never underestimate Hallie."

And that brings us to one of the ugly lessons we've learned: that watching how people treat our child tells us an awful lot about who they are and provides us with important feedback that determines whether we would like these people to remain in our lives.

Back in the old days, before Hallie turned two, a lot of folks were sitting around waiting for her to catch up. This is not their fault: the notion that preemies catch up by age two has been so popularized by doctors, nurses, the media, and other parents, that I'm sure that it was hard not to buy into that particular fantasy. Sharon and I did, probably, on some level, too. But then Hallie turned two and still was not caught up (heck, who am I kidding? At age two she said no words and ate no foods). And by two and a half, it seemed like she was falling further and further behind. In the eyes of some people, Hallie shifted status from the preemie-who-was-going-to-catch-up-by-two to the globally developmentally delayed kid (since I am sure that most of these folks are far too PC to use the "R" word to our faces) who is not good enough to go to the right schools or play with typically developing peers. Rather than see Hallie as a kid, and one who is making remarkable progress, they see her as a condition (and I suspect as a condition that might be catching).

So, in the spirit of not sweating the small stuff, we've also come to embrace the idea of not sweating the small-minded. Hallie is a remarkable kid who has gone through more in her short life than most people will ever experience. She's in the middle of a developmental growth spurt at this point and the people whom we love and who love her are finding it amazing to watch how much she is growing on the cusp of turning three. Will she be caught up by 3.5? Who knows, and honestly, that's besides the point. The point is that we are enjoying her and celebrating her where she is right now and not just waiting for her to get to the next stage.

Another lesson we've learned is that special needs parenting is hard. It is much harder than earning a BArch and a PhD combined, and it's also much more worthwhile than any other academic or professional achievement either of us has attained in our lives. But it does take its toll. Along the way, and particularly during the really difficult period between Hallie's first birthday and late into this spring, when we were dealing, at various points, with non-stop vomiting, an intractable speech delay that summoned in us fears of apraxia, the opening up of the developmental gap, anxieties about autism and Hallie's IEP, and the like, we were not the best friends in the world to some of the people who DO care about her and about us. Now that things have attained a new normal in our lives, Sharon and I are going to make an effort to be better friends to those people in our lives who matter and have fallen away.

Posted by Picasa

Posted by Picasa