How Old is Hallie?

Lilypie Fifth Birthday tickers

How Old is Lea?

Lilypie Second Birthday tickers

Thursday, August 30, 2007

Picture Free Update...

...from one very tired mama.

School started up again this week and I've been up at 5:30am (well, 5:42am) every day for the past three days in a row. Last year, because the school where I teach is very generous, I was able to reduce my normal load by 2 classes. That meant that I had very few students each semester (no more than 20). This year, I am back to teaching a normal load, and have about 60 students. I've kind of forgotten what it is like to be greeted by a sea of 30 unknown faces (and how is it that college students seem to get younger and younger every year? After all, I stay the same age, right?).

Anyway, enough about me. You guys are here to hear about Hallie. But at least this explains the utter and complete lack of photos in this post.

Hallie's doing really well. When last we checked (over a week ago now), she was 19 lbs. 13 ounces. We're thinking that she's got to be around 20 lbs. at this point. This is tremendous. This also has us backing off just a bit on the calories. Sharon is valiantly attempting to get rid of the 3am feeding; alas, it seems that Hallie is a bit dependent on it, and so we're having to get up by 5 or 6am, rock her back to sleep, and are hoping that this doesn't take too long to accomplish. We're also beginning to lighten up on her calories. Since she is pretty dependably eating 4 jars of baby food (one of which is often a baby yogurt) per day and around 18-20 ounces of formula, we're beginning to mix some whole milk in with the pediasure/nutren brew that we're serving up. We'll see if this has a negative impact on her weight gain (a moderating curve is good, but we don't want her to drop back down or anything) and adjust accordingly.

We've also been using our feeding tip of the month (courtesy of St. Joe's in Paterson), which involves getting her to open her mouth and lean in to the spoon, rather than just shoving the spoon into her mouth and hoping for the best. Hallie is doing pretty well with this, especially for the first half-jar of food each feeding and especially when we're able to be consistent about timing her meals, feeding her, etc. Sharon is, of course, better at this than I am, but I manage ok.

We're hoping that the new nanny we hired manages ok, too. We had tried out two people, all of whom were utter and abject failures. The first was nice enough but inexperienced with infants generally (nothing like fastening the diaper the wrong way to make that one clear) and the second was better-trained but utterly inflexible. She didn't really listen to us and tended to dismiss our experience and our tips (and, I suspect, the very fact that Hallie is an ex-23 weeker with GERD and swallowing/aspirating issues) and basically decided to do things her way. Which got her vomited on a couple of times, meant that she failed to feed Hallie, and led her to demand more money of us (A LOT more per hour) because Hallie was "difficult." When we decided to look elsewhere, she got really indignant and essentially accused us of "babying" Hallie and keeping her back. I say good riddance (and that we're really glad that we found this all out before she had the chance to do more damage than good. When we say that Hallie needs to be held after eating, there's a reason for it. It's not that the kid is spoiled, but that the reflux is an issue. And when we say that she needs to be fed carefully due to aspiration problems, we mean that we are keen on keeping her from developing pneumonia and hurting her lungs, which have been good so far, but which were crappy at best and non-existent at worst when she was first born. And when we say we don't give her solids to self-feed yet, we speak from experience that she has an overactive gag and cannot safely tolerate much really solid food unless it's cut up really small and melts in her mouth. We know that Hallie knows how to pick up food and get it in her mouth---that's never been the problem (and certainly wasn't tonight, when she chowed down on tiny slivers of olives and mushrooms and veggie sticks from Whole Foods with great glee). The teeth she's growing will help, but basically, our sense (from lots and lots of experience) is that we need to take things slowly where feeding is concerned.

So nanny trial number 2 failed. But behind door number 3 was a very wonderful, experienced nanny with very good energy (read: patient and much more zen) and a true soft spot for our little girl and our moderately dysfunctional (in its own way) family. We are hoping that she is able to deal with feeding Hallie because otherwise, she is already pretty excellent. Not to mention, musical (she is a percussionist, keyboardist, and singer songwriter). This is truly cool in its own right, but even cooler because Hallie responds so thoroughly to music. (In fact, one of the things I need to try to capture tomorrow is Hallie grooving to Patti Labelle's Gospel ABC on her new favorite Sesame Street DVD. It's very cute that Hallie copies Miss Patti's and the assorted Muppets' hand motions, even if this makes it harder to feed Hallie during this particular tune).

Anyway, all of this makes me realize how much going with one's gut matters here. Yes, we are hiring someone for a job. But this isn't just a job; we are trusting our baby with someone. Candidate number 2 set off bad energy bells for both of us, something that was based on no hard evidence whatsoever. It's just that both of us felt a certain uneasiness about her that we could not specify, and this led Sharon to even go so far as to think about getting a Nanny Cam. In contrast, we have the warm fuzzies for Candidate number 3 (---did I mention, that, in addition to everything else, she also likes NPR?). So keep fingers crossed for us, because we really want this to work out (not to mention really need it to, since we absolultely cannot manage without one day of childcare/week since both of us have to be at work for 3 days a week each).

I will try to get some cute pics of Hallie for my next update, but meanwhile need to get into bed because I am about to turn into a pumpkin. Which is, alas, sounding pretty seasonal; I cannot believe that Hallowe'en is just around the corner. If anyone has any ideas about costumes that are devoid of headgear (and perhaps even shoes), please let me know. Unless Hallie is playing 'peek-a-boo', she can't stand anything on her head. She is going to have a rude surprise coming this winter...

Wednesday, August 22, 2007

Photo Retrospective--Mid to Late August

A couple of weeks ago, Hallie got all dolled up in one of the many fine dresses that she inherited from her friend Alex to attend not one, but two birthday parties in the same day.

Here's a shot of her on her way to her friend Adam's party, where she had a lot of fun with all the neighborhood kids. Notice the drool all over the front of her shirt. It's evidence of tooth number 3, which FINALLY just popped:

Later on, she had a great time playing with Ethan (and Karina, who is not in this shot) at Uncle Josh's birthday party. Josh received a great number of bottles of fine single-malt and top shelf bourbon. Happily, Hallie did not partake in any of them.

Later that same week, we had our now-famous hospitalization for Hallie's scopes and swallow study. To cheer up our little girl, we gave her her very first oreo cookie. She knew just what to do with the inside and scraped it clean with those two tiny teeth. She did try to get some of the chocolate cookie in her mouth, but most of it ended up on her:

To reward Hallie for being so brave about all those tests (the worst of which was the IV inserted by the very nice anesthetist who needs to go to phlebotemy school), we took her to Sesame Place again last week. She had a ton of fun in and out of the water, and spent a lot of quality time with her friend Alex.

Hallie really enjoyed the bird bath and toddler pool. She took like a fish to water and seemed to know how to swim quite instinctively.

Of course, all the fun and games came to a screeching (or wretching) halt when Hallie decided to drink some of the pool water. This was not only yucky and unhygeinic, but posed a greater risk to her now that we knew that she aspirates on thin liquids. Too bad they don't thicken up the drink with a bit of Simply Thick. Actually, that sounds at least as bad as Pediasure backwash...

Anyway, we moved back to terra firma and Hallie visited her favorite attraction at Sesame Place--the gym mats.

There, she made a new friend:

And she got buried in rubber blocks by some big kids who thought the prospect of building a fortress around Hallie was hilarious:

At one point, Hallie appealed to an equally pint-sized ally for some assistance:

And ultimately, our little marauder did break free:

And what's a visit to Sesame Place without a meet and greet with your favorite characters?

In the middle of all this Hallie-related fun, we moms got to celebrate our second anniversary (of our ceremony; we've actually been a couple going on six years next month). On Monday, I came home with these flowers for Sharon:

I might have been responsible for the flowers and a yummy assortment from a local chocolatier that is FABULOUS called Naked Chocolate, but Sharon is responsible for the wonderful photography. And the flowers themselves are reminiscent of our wedding flowers (mango calla lillies, salmon and red roses, and irises, which we assembled ourselves---definitely an undertaking but it was worth it).

We actually got to go out together two nights in a row last week. On Monday we were having a trial run for a baby sitter and went to a new and very yummy bistro a couple of blocks away. The raw bar assortment was yummy; the babysitter was not so much.

On Tuesday, Aunt Neystice and Aunt Kim babysat Hallie while we went out for a more formal anniversary celebration. They were much better at taking care of Hallie but sadly are unavailable to watch her this fall.

Then, on Saturday, Sharon, Hallie, and I headed down to the Shore for what we supposed was a last weekend by the pool. I packed accordingly. The weather, sadly, did not comply and the weathermen hadn't the faintest clue on Friday that it was going to be 60 and raining all weekend. Hallie ended up wearing her cousin Adam's 18-month sweatshirt and some pants that I threw in at the last minute.

However, in this shot, she is wearing neither shirt nor sweatshirt. Indeed, what she is wearing is her lunch.

That's what you get when you let the girl feed herself!

That's all for now; we're STILL engaged in our (apparently) never-ending search for someone to take care of Hallie. I go back to school next week, so it's kind of urgent at this point. If anyone out there has any recommendations for finding a nanny/sitter who is patient enough to deal with a somewhat-hard-to-feed micropreemie, by all means let me know. We have a few very good responses to our most recent Craigslist advertisement, but any advice you might have for training caretakers in the fine art of sleep feeding and reflux/laryngomalacia positioning are always appreciated.

And, speaking of laryngomalacia (and vocal cord paralysis), a big shout out of thanks to Laura for her great video of Daniel and his creative and cute antics, not to mention heartfelt renditions of ABC. You can watch for yourself at Adventures in Juggling

Saturday, August 18, 2007

Updates and Milestones (just not the typical ones...)

Hi All,

I do promise to add in some pictures later---I realize that I am woefully remiss on uploading them to my computer and then downloading them to the blog. It's not like I haven't taken any lately; it's just that it's been a pretty exhausting few weeks.

Anyway, I wanted to update everyone on Hallie's tests results. When I spoke to the Pulmonologist on Tuesday, she said that, while they did culture a couple of different bacteria from her lung/bronch wash, a. both of the things that they cultured were resistant to Amoxycillin (the antibiotic Hallie was taking) and b. that it was awfully suspicious that these two (unspecified) bacteria were cultured from the same sample. Hence, she (the pulmo) felt that the sample itself was contaminated and didn't really tell us much of anything. If Hallie does get sick again (and we are crossing our fingers that she won't), the pulmonologist will prescribe a different antibiotic. I am sure that this will be fun to give to our little girl. Even the bubble-gum-flavored amoxycillin was sort of a nightmare; Hallie knows what a syringe looks like and her experience with syringes is not a terribly favorable one. I am sure that she still has the taste of the bicarbonate into which they suspend prilosec in her mouth. So we had to mix the amox. into vanilla pudding, yogurt, or at least give it to her by the spoonful to get it down. Fun, fun, fun.

Still, the pulmonologist was not so concerned as to order another bronchoscopy (thank goodness) and feels like Hallie's lungs sound clear; that most of the problems she is having are confined to the upper airway; and that Atrovent might be a nice substitute for Albuterol given that Hallie has laryngomalacia.

The GI samples were much more promising: Hallie shows no sign of damage to her esophagous from the refluxing acid nor any indication of having a milk intolerance or any other food-related allergic reaction. While she still might be aspirating a bit, no one is too concerned about this. Nor are they suggesting that Hallie have a G-tube placed. This is because she is growing so well.

Which brings me to her current stats: our very wiggly girl weighed in at 9,150 grams (give or take a few to account for the wiggling), which is equivalent to 19 pounds 9 ounces. This is phenomenal (and would still be were the scale a whole 100 grams off). Basically, Hallie is at the 50th percentile for her adjusted age in terms of both weight and length and at about the 10 per cent mark for her actual age. So her steep ascent continues.

This does not mean that the vomiting has stopped; indeed, we still have a hugely impressive record of one day of no vomiting in a row. But she is taking more in and keeping more down these days.

More important milestones, however, were attained by Hallie this week:

1. The putting-something-into-a-hole milestone. Hallie has long been resistant to the idea of putting things in things and instead has focused exclusively on taking things out of things. To help remedy her of this defect, Sharon and I bought her the Fisher Price gumball machine:

For the first few weeks that she owned this toy, Hallie could not be bothered to put the balls back into the machine. But yesterday (Thursday), she suddenly put it all together and now she is trying to put EVERYTHING into the gumball machine.

2. The pooping milestone. Hallie has now pooped on the floor to her bedroom (she was sans diaper at the time because Sharon was getting her bath together and had forgotten to fill up the tub so she placed Hallie on the floor in the nursery for a wee second. Which turned out to be just long enough to squeeze out a poop and begin to trail it all over the place. If that were not enough (and I assure you that it was), Hallie also decided to poop in her bathtub tonight. Clearly, she is living up to her nickname of Poopy Lou (which dates back to the NICU days when Hallie would poop 3-4 times a day; she still does!)

3. The first-word-that-suggests-that-the-kid-watches-too-much-Sesame-Street. The word? A highly predictable Elmo, used absolutely appropriately to signify red furry monsters with high pitched voices.

4. The first-attempt-to-let-go-and-walk-milestone. A big one, though still unsuccesful. And what, might you ask, motivated her? Paper, of course, which is the food of choice for Hallie since all that pooping requires a high fiber diet.

OK, that is all for now; I'll try for some real images in my next post.

Saturday, August 11, 2007

Update on Hallie's tests

This is going to be brief because the last few days have been exhausting and this mama needs some sleep.

Anyway, we don't know everything yet, but we do know the following:

Hallie's left vocal cord is paralyzed, most likely due to iatrogenic causes, namely the ligation of her PDA. This seems like a small price to pay for life, but we cannot help but wonder what her voice will sound like. More importantly, i need to follow up with ENT to confirm that the paralysis is in the midline position.

Additionally, Hallie has laryngomalacia. This is the most common upper-airway issue that babies have and most often it self resolves by 18 months-2 years. This floppiness in her larynx may explain her speech delays and some of her eating issues. The is a very strong correlation between laryngomalacia and GERD.

We did, indeed, have a Modified Barium Swallow Study on Friday and, not terribly surprisingly, it showed aspiration on thin liquids. There was some pooling on thickened liquids (we have been using Simply Thick to thicken her feeds for the past month or so and this has seemed successful to me), but no aspiration. There may have been some penetration into the airway but Hallie managed to push it out. Purees were fine across the board.

Where do we go from here? Unclear to me and I really need Hallie's ped. to put it all together for me. We are still awaiting results to see whether the macrophages in her bronchial lavage fluids are lipid-laden, which would not be a good thing since that would suggest a lot of aspiration. Given how well Hallie is growing, doing developmentally, and the like, we'd like to resist any drastic surgical intervention. My hope is that the GERD and floppy airway will improve and that we can just start acting/being like parents, and not parents of micropreemies.

I don't mean to kvetch; in the larger scheme of things, Hallie is doing really well. I just wish that we could make her more comfrotable and get her over this hurdle.

Monday, August 6, 2007

Hallie at the Beach

Hallie finally made it down to the Shore this weekend. We'd be trying and trying, but our foray to the beach (which is a mere fifteen or so minutes from where Grammy and Aunt Laura live) has been sabotaged by bad weather or bad health or mommies' inability to make it out the door in time with all of our beach gear on various occasions this summer. We're happy to report that none of the above applied on Sunday.

Anyway, we're thrilled to report that Hallie has ocean in her blood and that she was not in the least freaked out by the sand and surf. Instead, she dug right in, so to speak.

Mommy held Hallie at the water's edge and they 'jumped' the waves together (Hallie was in mommy's lap the whole time). The water was impressively choppy since it was pretty windy and just about high tide. Hallie thought the whole experience was a blast.

Meanwhile, the two moms didn't exactly win any parenting awards when they totally forgot to put Hallie into a swim diaper before all of the aforementioned activity. In the past, they had put on the swim diaper too soon and ended up with a puddly mess. This time, they only managed to change Hallie into it after she had a huge blowout diaper that required two or three adults, several diapers, a chuck, and much distraction to be changed. Live and learn. Smile.

Here's Hallie enjoying her first ever ice cream sandwich. More wich than sand, fortunately, since Hallie decided that there IS a non-edible substance she's not terribly interested in putting in her mouth. We were happy to find that to be the case, though we'd like her to not put the seaweed schmutz and pieces of straw and rock that wash up on the shore in her mouth, either.

Late in the day, the sea air had gotten to Hallie and she began to settle in for a bottle and a nap. But before beginning to suck in earnest, Hallie teased mommy, and mama caught it on video:

A good day, indeed a lovely weekend, was had by all (---thanks Grammy for watching Hallie on Saturday night so that the moms could have an all-too-rare night out!), and Hallie wants to do it again, SOON.

Meanwhile, we're gearing up for Hallie's joint ENT/GI/PULMO scopes tomorrow. Everyone here is a bit nervous (well, Hallie doesn't really know what she's in for, thanks goodness, but the moms certainly do. We hate, hate, hate the idea of her quite likely being intubated and placed on the ventilator when we were fighting so hard to extubate her this time last year, and we're a bit concerned that none of this invasive and surgical procedure (complete with general anesthesia) will yield information that we can translate into a way of solving her congestion/reflux issues. But hopefully we'll know something more about the damage to her trachea, her vocal cords, and her GI tract and whether there is evidence of aspiration or allergies that aren't otherwise visible. We've been trying to treat Hallie with shots in the dark and that has obviously not been terribly productive. Hopefully this will help us do something to make her more comfortable.

Play Date with Benjamin

On Friday, Hallie had a play date with Benjamin, who is a fellow ICN graduate (he is a 28 weeker born a couple of days before Hallie).

Hallie thought Benjamin was super cute and was very excited by the idea of playing with him:

Benjamin and his mommy and daddy (Polly and Chris) just moved from Philadelphia to Park Slope, Brooklyn. But we'll be keeping in touch with them and seeing them (Polly's family lives in Philly) because of our special bond.

Wednesday, August 1, 2007

On The Charts!!!!

Hallie is ON THE CHARTS for her ACTUAL age. She weighed in at 8420 (up from 8150 on Friday--both on the scale she's normally weighed on at the pediatrician's office). That's 18 lbs. 9 ounces, and a 9 ounce gain, from last Friday.

In other words, our girl is HUGE. And has thighs to prove it (they aren't fat so much as strong...)

What's the trick that brought us here? I think that shifting her from prilosec in suspensions to prilosec capsules mixed in a bit of applesauce is really helping her eating a lot. The old method of giving it to her (mixed with enough formula to kill the taste of the bicarb), in tandem with the notoriously unstable and less long-lasting suspension meant that she was benefiting very little from the meds. With the shift, she's feeling much better and is eating better, too. The only thing keeping down her volume is her congestion, and hopefully we'll get that under control soon. Meanwhile, the second key has been increasing the amount of solid baby food (purees) that she's eating---she's now getting over 3 jars a day, which is a huge deal to us.

Still, we have the congestion that remains unimproved, and that may actually be turning into a full blown sinusitis. We're going to admit he voluntarily for a scope that will be watched and evaluated by GI, ENT, and Pulmonology. Hopefully they'll have more answers after that and hopefully we'll be able to get this under control at some point.

Meanwhile, we are thrilled with her size, her progress, and her overall liveliness. This liveliness is getting even cuter now that she is vocalizing all the time and even beginning to make some consonant sounds (g, k, r, and more recently, an attempt at an 'm' that sounds a lot like kissing). We're so proud of Hallie for how far she's come!