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...

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

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.

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.

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.

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!

Hallie's Bathtime Antics...

Hallie loves bathtime; this is why:



Now, at long last, with sound...Enjoy!

Photo Thursday

I sort of fibbed last time when I said that we had no new pictures. The issue was that I had forgotten to upload the ones we do have...

So, for your visual pleasure, (and to spare you my verbose prose for a bit), I'll start this post with a long photo retrospective of the past week or so.

First, we decided that Hallie cannot possibly really have a 13 week long cold and that the issue must be something else. Since the quarantine hadn't really (who am I kidding...in the least is more like it) improved the congestion situation, we decided that for the sake of Hallie's development and her mommies' sanity, we'd lift it a bit and allow some interaction with friends and family. If things get better with our new regimen (more on this later), we'll lift the quarantine further. However, we're going to be vigilant about making sure we spray down toys, purell everything in sight, etc etc.

So about ten days ago, we brought Hallie over to see Karina. The kids obviously missed each other desperately and spent the first ten minutes hugging. No exaggeration on this, either. Unfortunately, we didn't manage to capture this session (the camera was over in our house, next door). But we did manage to get one cute shot of Karina doing Hallie's hair:



Hallie also enjoyed playing with Karina's toys, and especially with the excellent music table that Karina got from one of her Hong Kong relatives. Here's DJ Jazzy Hallie mixing it up:



And here's a great shot of Hallie's strong legs and lack of butt. Seriously, this kiddo has no hips and no tushy. Unless she gets a belly somehow, I think we're going to start looking for toddler suspenders for her (I am sure she'll enjoy chewing on them):



Then, last Saturday, despite the vomiting and congestion, Hallie and Mommy went off to the shore (I stayed home to get some stuff done) to visit Grammy, Aunt Laura and the cousins. Hallie loved playing in the pool (her favorite activities are water-related. She loves her floaty device, all wading pool experiences, and lots of splashing. In the bath at night these days, she likes to stand up and then let go and splash hard on her butt and then stick her face in the water and blow bubbles. She does this over and over and it's really cute, even if it is a bit odd. Alas, we haven't yet captured that on video but will try to do so before she gives up this practice for some other antic). Hallie was less sure of what to make of the carousel on the boardwalk at Ocean City:




She eventually settled in for the ride, which (along with the chock-full day, the sun, and all the activities with her cousins) began to put our little one to sleep:

Hallie had a great time as usual hanging out with the family. Here's a picture of Hallie smiling at Hannah, who is doing a very nice supermodel impression:



Hannah always makes Hallie smile!



And here's Hallie with Grammy, Aunt Laura, and the cousins:



Later on, Hallie was taken on a visit to all of the great food emporia on Ocean City's boardwalk and tasted many new things.

Here she's staring adoringly at Mack and Manco's pizza (like Mommy, like Hallie!):



And here she's tucking into a cone of soft ice cream. Yummy!


And here she's having her very first experience with cotton candy, which went quite well. What could be better: it's melt in your mouth and chock full of calories. Now if they could only make it loaded with vitamins and fat, we'd have the perfect food for her. Any budding culinary chemists out there, here's your challenge: come up with a healthy, fattening, avocado flavored spun food that melts in your mouth, and you will have hundreds of micropreemie mommies as your loyal customers!



Then, on Tuesday, Hallie got to spend time (FINALLY!) with her friend Maya (and Maya's lovely parents, Rachel and Dan). Loyal blog readers will remember that Maya and her sister Elana were 25 and a half weekers born at the same hospital as Hallie and Olivia a month earlier. They were the people we always looked for when we were in the hospital (which was pretty much always, and their family was pretty much there constantly too) and we've gotten to know them very well over the past year. Unfortunately, our concerns about Hallie's health have kept the girls apart much more than we would have liked, but we NEEDED to see them on Tuesday since they are leaving for California this weekend. So we bit the bullet, sprayed everything down very carefully and had them over to dinner. Karina and Vanessa (her mom) also joined us, and the three girls had a blast together.

Maya, you were supposed to call!




Kiddle conference around the coffee table:




Karina having a good time petting Maya:


Anyway, the kids had a great time together, the parents had fun, and we will miss Maya, Rachel, and Dan A LOT. We hope they'll be back on this coast soon to visit Rachel's family and that we can make play dates with them here or in NJ (since Rachel's family lives very close to Sharon's, that should be fairly easy to arrange). Maya is such a beautiful baby with such a winning personality and it's going to be fun watching our girls grow into toddlers together.

Very very briefly on the Feeding Clinic at St. Joseph's: we had a good day, even if it was a long one. First, it was nice to know that Hallie has put on weight in spite of the problems with food and vomiting---according to their scale, she was...get ready for this...18 lbs. 4.5 ounces. We don't know if the scale was accurate (it was one of those really old-fashioned ones; you can really tell the difference in funding between CHOP and St. Joe's, which is in a very depressed area of Northern New Jersey). Anyway, even if the scale is off by a bit, Hallie has still put on upwards of 3/4 of a pound in the past week and is now very VERY close to being on the actual chart for weight (in other words, for 13.5 months). She definitely has more leg chub and a few extra chins.

But more importantly, even if they don't have the high tech bells and whistles that they did at CHOP, we found that the Feeding and Swallowing Clinic at St. Joe's was much more thorough and much more sympathetic to what is going on with us and more willing to try to figure out how to solve it. They did a more thorough observation of Hallie's eating (instead of the 1.4 seconds of me shoving the bottle in the baby's mouth before the CHOP doc came back in and said, 'she's got an uncoordinated suck, is aspirating, and probably needs a G-Tube). In fact, the word 'G-Tube' NEVER came up today. Nonetheless, they noticed from Hallie's posture, the way she crawled, etc that she was uncomfortable, that the posture looked a lot like her compensating for reflux that is not really under control, and they raised the question of whether the vomiting and congestion could be related to a milk intolerance that isn't as horrible as some kids' but is still causing her a lot of discomfort. This might make some sense since this all began when Hallie came off of breast milk, which had been diluting her Enfamil AR, and began to drink AR straight and then the very hard to digest Pediasure. First, we're going to try a new regimen with Prilosec that helps her system use it more effectively (moving from the bicarb solution to capsules, the beads of which we will mix with a little applesauce and feed to her an hour before dinner to make sure that her stomach is a lot less full). If that doesn't help, we'll move from Pediasure to Peptamen. And if that doesn't work, we'll see. But it was heartening to hear someone say something other than "live with it" or "tube her." I know that our Ped. has been trying to help (and he got us to St. Joe's to begin with, which is very good), but it's been a very frustrating two-three months and the frustration has pretty much persisted unabated. The very idea of having a reasonable sounding treatment plan and sympathetic people who are trying to really help us is calming. Hopefully some of this will work, because if we can get this under control, we can begin to teach Hallie how to deal with textures, subdue her gag reflex a bit, etc. Without getting the congestion and the pain that she must be feeling under control (not to mention begin to heal some of the damage that is being done to her esophagous), we can't really deal with the behavioral issues. Anyway, I'll post updates on this as we progress; meanwhile, keep your fingers crossed for us!

ICN Follow Up--the nine month update

I've been kind of hesitant to post. First, we have virtually no new pictures and, second, Hallie has yet another one of her colds. It's the latter that really has us down (and is probably the reason for the former). We finally made it ten whole days without an upper respiratory infection and, Tuesday, we were in the throes of a new one. I know that we should be thankful that her lungs, as usual, sound clear and that it's not worse than it is, but honestly, when, precisely, do we catch a break around here? On Monday, we visited Hallie's accupressure/cranio-sacral specialist who has been doing massages to help her with her swallowing. I am not sure that this really will improve her swallowing, but am fairly certain that it helped delay the onset of her latest URI. Hallie sounded pretty clear and ate pretty well on Monday. She even went so far as to fool the unsuspecting potential childcare provider/nanny (since when did everyone become a nanny? I remember just babysitting) into believing that she was an easy to feed/easy to change baby. Needless to say, everyone out there who might take on this Tuesday or Thursday all-day position is forewarned that our princess can do a backflip on the changing table (maybe a triple axle? do they rate babies and not just olympic skaters for these antics?)

Tuesday, however, was another story. We were back to Hunger-Strike Hallie, who was super congested.

Wednesday was even worse. We were scheduled for her 9 month follow up at the ICN and, since she was not running a fever, we decided to keep that appointment. At least it would give us the opportunity to bounce some ideas off of the very wonderful neonatologist who handles developmental follow up.

In any event, with a bit of coaxing, Hallie did everything that (I think) she was supposed to do. This is a relief but not all that surprising. She does seem to us (untrained mommy types) to be right on target in terms of her gross motor skills, and pretty good (in that she has a rudimentary pincer grasp and the capacity to bang blocks together and the like) in terms of her fine motor skills. Her language skills seem to us to be lagging but, that said, over the past few weeks she has been vocalizing a whole lot more and doing some imitation and tonal vocal sounds. We do have some hope that at some point she'll begin to vocalize consonants.

The aforementioned excellent neonatologist said that it has only been recently that the field has been paying any attention to delayed language skills and that, surprise surprise, they are finding that this is more the rule than the exception where micropreemies are concerned. Certainly a large majority of the micropreemies out there who are otherwise typically developing seem to have delayed language skills. I am not sure why anyone finds this to be surprising---you try shoving a fairly rigid tube down my throat and I too would be averse to all things oral and have all sorts of motor problems when it comes to moving my lips and the like....

And that brings us to topic number two in the family (which is indeed topic number one around here): eating. Or not. Sharon and I are arguably too good at this skill (and lack time to exercise). Hallie, on the other hand, exercises to her heart's content and would prefer approximately zero time eating.

Hence, while she gained weight during the first part of this month (reaching a high of 17 lbs. 5 ounces, or about 25th percentile on the growth chart for her adjusted age; she is 72.5 cm or about 75th percentile in height for adjusted age and 43 cm head circumference, which is 25th percentile for adjusted age), it's our very strong suspicion (confirmed by unscientific lifting of the baby that involves little to no exertion) that she has lost weight over the past couple of weeks. Of course, this is related to her (most recent) cold and mucous build up, which no doubt makes it hard to eat (as in her nose is always stuffed) and easy to throw up (she has so much mucous in her system that she coughs it up, along with whatever paltry amount of food she has ingested. This makes a lot of sense, cognitively, since it's more important to be able to breathe than it is to eat). This is very good for her in terms that it protects her airway but very bad for her weight as it means that, once again, she is threatening to fall off of her adjusted growth chart.

We're not really sure what to do here. Hallie is most certainly not adjusting to the pediatrician's schedule (which consists of: she will eat when she is hungry). Our girl, simply put, has no idea what hunger is and, between all of the cold-related and reflux-related vomiting, I imagine she has come to think of food as evil. Who can blame her? Yet, without eating she cannot get better at eating, In any event, we're hoping that our consult at St. Joseph's hospital in Paterson, combined with the collective wisdom of many preemie parents, will help povide us with some answers about what is going on here. And hopefully we'll also locate a few strategies to help keep Hallie eating. We're already thickening her feeds with Simply Thick that has had minimal impact on her intake. In any event, we'll try to retain a grasp of whatever sanity we still have and forge forward on this because, after all, what else are micropreemie moms supposed to do?

One idea that we've had (but which her pediatrician does not favor) is introducing Periactin. Periactin is an antihistamine that also functions as an appetite stimulant and, while it doesn't work for all kiddos, it does seem to be useful to a whole bunch of them. It seems to me that it might also be helpful in terms of preventing her mucous buildup (since it is, after all, an anti histamine). Yet, from what I gather, it's not a good drug to prescribe to those with respiratory distress. Yet Hallie is prone to colds but not pneumonia or any knid of desaturation of oxygen; it's unclear to me wether she is in respiratory distress or whether she simply has a chronic but not terribly devestating form of reactive airway disease. Anyway, I will bring this up again with her ped. and GI specialists and see what they think...

Meanwhile, we'll just muddle through...

This is how Hallie sleeps...

with her butt up in the air.

Seriously, it's her favorite position.

No time now for a real post, but I promise to write more later.

One, Two, Three, Counting with Ease...the July 4th Post

I think that three posts in three days is some sort of record for me, but there's a lot of catching up to do. Also, excuse me if I'm a bit out of order here; this post actually should precede the story of Curious George and the Climbing Hallie.

Anyway, for a while now, Hallie has had quite a well-developed Sesame Street habit; we inherited the Sing Yourself Silly DVD from Aunt Laura (Hannah has outgrown it and Adam never liked it much) and have been playing it for Hallie daily, at the very least (who in the world am I kidding? The kid won't eat without a good dose of James Taylor and his little friends singing the tale of Jelly Man Kelly. This song gets repeated at least five times during any meal!) Hallie actually does seem to watch Sesame Street; she squeals when she sees Elmo, she loves the songs, and unless there's a lot of uninterrupted dialogue, she'll sit in one place and pay attention to the action. I am risking being called Abby Cadabby by my own daughter some day. Sigh.

In any event, our friends Ethan and Karina had been to Sesame Place one time each earlier this season and we were feeling a bit jealous and thinking about an outing there ourselves. Hence, we were thrilled when Billie, Holland and Eden's mommy, let us know that they were going to be going there for their vacation. We all decided to meet up on the 4th of July for a joint park experience.

Alas, the weather was uncharacteristically cold and cloudy (the whole rest of the week was lovely; now there's just unrelenting heat and humidity around here--good thing that we live near very tasty water ice emporia). So splashing in the lazy river was out of the question. Nevertheless, we had a great time. This may sound very sad, indeed, but it's wonderful to be with parents who take it completely in stride when your kid refuses to eat anything at all, throws up in her stroller, and only takes her bottle once she collapses from exhaustion. It's nice not to be dismissed as utterly insane when we explain that we feed our kid food that contains butter, sugar, cream, and avocado--all at the same time and that we know precisely (or very nearly) the number of ounces, calories, etc that she consumes in any 24 hour period and her weight down to the gram. But this isn't the only reason that meeting Holland, Eden, and Billie, and John was wonderful: they are a great family and the girls are even more amazing in person than they are on their blog. We were really honored to meet them because we admire them all so much. It's not just that they have this wonderful blog that so many of us micropreemie parents have pored over, consulted, taken solace in, etc. More importantly, I think that, on the blog, Billie and John have shown all of us how much fun they have as a family. This is something that is too easy to lose sight of when we're in the middle of crises and suffering from the post NICU PTSD. And that's tragic, really; remembering to have fun with our kiddies and enjoy them for who they are, regardless of the unexpected circumstances of their births, is one of the most important things that we can do as parents.

Anyway, at the risk of gushing, suffice it to say that Billie, John, Holland and Eden are great fun to be around. We hope that we can coax them back this way with offers of showing them all of the really fun stuff that is available for kids in the Philly area (from storytelling and kids' plays in front of the Betsy Ross house to the carousel and mini golf in Franklin Square to the Camden Aquarium and Philly and Elmwood Zoos, just to name a few. Oh yeah, and Sesame Place always beckons again!!!). Seriously, if any of you loyal readers (assuming that you are not already in Philly, of course) are in the area, please let us know...

Anyway, back to the day. We were greeted at the gate by none other than Super Grover on our way to rent a double stroller for Holland and Eden.


Alas, no one was in the mood to pose and smile because everyone (with the glaring exception of Hallie) was hungry. So we headed off to get a snack at Elmo's snack shack. We were very impressed by how much gusto Holland and Eden relished their meals and this also gave us hope that Hallie's appetite might some day kick in.

After a quick change (not only did we have to change Hallie out of her pukey outfit, but no sooner than we accomplished this feat---since changing our wriggly girl has become somewhat of a Herculean task)--did Hallie proceed to poop all over herself. It turns out that Pampers Baby Dry might protect kids from pee but definitely not from poop---the darned things leak like crazy, especially when your kid has no hips, no butt, and no belly to hold them up. So, two outfits later, we were ready to roll.

Hallie, Holland and Eden all loved the crawling around space for little ones:





Eden had a great time playing around on the foam blocks. We loved this ear-to-ear smile:



The only thing that deflected Hallie's attention from crawling, exploring, and eating pieces of schmutz on the gym mat (yes, we did have to check our germophobia at the door, and no, we are not happy about this, and yes it will probably be a long time before we do this again) was the bright orange neon band on Billie's arm. Hallie took an immediate fancy to this and kept trying to eat it. Eden tried to signal to Hallie that this was HER mother's arm, but Hallie was, as she often is in such things, positively unrelenting.





In this picture, I am crawling after (and over) Hallie to keep her from eating things:



After the kids were done crawling around, we all gathered to watch the 2pm parade down Sesame Street.



Holland not only had a ton of fun dancing to her favorite songs but also got to meet Elmo:



Hallie and Eden had the best seats in the house:



Lots of fun was had by all and the girls were all tuckered out. This was the first (and only) time Hallie deigned to nap all day. Needless to say, this was when we made up for all those missed bottles!



Later on, Holland and Eden enjoyed the water rides at Sesame Place and we headed off to Sears to pick up Hallie's first-year pictures. Here area a couple of our favorites, including some collages. We took so many good shots that it's hard to upload them all (it was also hard to decide which ones to get, so Sears ended up really benefiting from our visit).