Hallie and Olivia's chances

As many of you know, the New England Journal of Medicine just published a study concerning the prediction of outcomes for the very smallest preemies, who were born at gestational ages of 22 to 25 weeks from 1998 to 2003. The data they found suggested that sex (female is better), number of babies (singletons are preferable to multiples), size, and whether the baby or babies received antenatal steroids (generally, two shots of betamethasone are administered to moms in pre term labor to help mature the lungs of the fetus or fetuses prior to birth; these need 24 hours to work) are as important as gestational age, which can be wildly off (though it was not in our case because Hallie and Olivia were conceived using IVF).

NICHD Neonatal Research Network (NRN):
Extremely Preterm Birth Outcome Data

Based on the following characteristics:

Gestational Age (Best Obstetric Estimate in Completed Weeks): 23 weeks
Birth Weight: 590 grams
Sex: Female
Singleton Birth: No
Antenatal Corticosteroids: Yes
Estimated outcomes* for infants in the NRN sample are as follows:

Outcomes Outcomes for All Infants/Outcomes for Mechanically ventilated infants
Survival 34%/43%
Survival Without Profound Neurodevelopmental Impairment 22%/28%
Survival Without Moderate to Severe Neurodevelopmental Impairment 12%/16%
Death 66%/57%
Death or Profound Neurodevelopmental Impairment 78%/72%
Death or Moderate to Severe Neurodevelopmental Impairment 88%/84%

* These estimates are based on standardized assessments of outcomes at 18 to 22 months of infants born at NRN centers between 1998 and 2003; infants were 22 to 25 weeks, between 401 and 1,000 grams at birth. Infants not born at a Network center and Infants with a major congenital anomaly were excluded. The first column of estimates is based on findings for all 4,446 infants in the study. The second column of estimates is based only on the 3,702 infants who received intensive care. The rate of a given outcome had intensive care been attempted for all infants is likely to be intermediate between these two estimates. Sonographic estimates of fetal weight may be used in anticipating birth weight, while assessing the minimum and maximum likely birth weight consistent with the potential error of sonographic estimates.

As you can see, Hallie's chances for survival without profound impairment were not very good. Yet she, and a lot of other babies listed in our preemie pal links, are doing relatively well. This largely goes to show that statistics do not apply to individuals, and I would be suspicious about efforts to try to make decisions on the basis of statistics as a result of this very important fact. I think that the information is useful, but can be used very badly. My own personal preference is for a wait-and-see-how-the-baby-does approach. And even then it's hard to tell: Hallie had severe BPD (bronchopulmonary dysplasia) and a PIE (basically a collapsed lung) and breathed about as well as an end-stage COPD adult breathes (which is to say, not very). She had an awful time getting off of the vent and we were not sure she would fare well breathing-wise when she came home. Yet her lungs have been extremely resilient, she got off of supplemental oxygen very quickly, and any stridor was reflux/GI related and not prematurity related (at least not directly). We expect that when we finally make it in to see the pulmonologist, that we'll be discharged, or at least reduced to annual visits. No one predicted that at all. And so it is hard to tell. The calculator doesn't make it much easier for parents who are put into the same position as we were in terms of deciding what to do for their kids, and can only be put to ill use by insurance companies and other institutions I don't particularly trust (with my health, life whatever) who might pressure parents, hospitals etc to make cost based decisions influenced by risk analyses that don't apply to actual individual cases. I certainly would fight any effort to do this, and I hope that you do, too and that, when you do, think about Hallie and all of her little cyberfriends.

One Cute Kid

As Sharon reminded me tonight, we've gotten a bit clinical on the blog of late and haven't had quite enough cuteness. Now, while the acronym for Hallie's food allergy (FPIES) is, indeed, plenty cute (but the problem, suffice it to say, is not), I think she's got a point here.

So, without further ado, here's an early morning dose of Hallie cuteness.

Please note the hairbow in this picture. It is unlikely that you'll ever see one again since Hallie STILL can't stand having anything in her hair!



In this shot from last week, it's clear to me that she's no longer an elf but a little kid.


First, let me point out that Hallie is the sweetest little kid imaginable. Right now, she's still in a major hugging and kissing phase. She'll kiss us all the time (usually even if we don't request kissing) and always wakes up smiley and happy to see us (she waves hello, which is what we take to mean 'I love you' in lieu of the words she cannot say). She also kisses everything that she adores--pictures of babies in books (a big hit for her), the pictures of babies on her baby food jars (she insists on doing this multiple times during every meal), her stuffed Sesame creatures, and most recently, Katie the Kitty whom we are cat sitting (for Josh and Nancie and Ethan and Cole, who are getting their floors redone before putting their house on the market---boo hoo!). She also tries desperately to kiss Karina good bye every time she leaves (and tried this tonight with our other little neighbor, Adam), but the kids are a bit more resistant than the cat. O

Hallie also loves to hug, and she'll hug anything that she adores at any given moment. This could be one of us, or a stuffed animal, but it can just as easily be a small wooden spool, a tiny fleck of something that she picks up off the ground, or anything else that she fancies. It's a very endearing but odd habit.

Speaking of endearing and odd, she also likes to use all sorts of objects as telephones in which to inquire "who is it?" Often these are real telephones (we've blocked outgoing long distance as a prophylactic measure around here), but just as often they are not. They can be telephone-ish remote controls, but they can also be shoes, refrigerator magnets, or in the case of one 'telephone' this past week, a strand of hair. Talk about fiber optic communication! We don't discourage this; after all, it's a great way for working on fine motor skills, of which Hallie seems to have plenty.



Hallie has also gotten great at doing chunky wooden puzzles and we've recently discovered that she knows most of her shapes and quite a few colors (at least when associated with these familiar shapes). It's hard to tell what she knows often because of our language barrier, but we were very impressed that she could bring us the purple rectangle from her puzzle and that she could put the pieces into the puzzle in the order which I stipulated. Very cool.

On top of this, Hallie has gotten very, very fast in terms of her walking/running. Lately she insists on walking to the park, and loves to head outside at all opportunities. She's none to fond of holding our hands, but we are working on this. And today she spent a good couple of hours running down the block, pausing to watch us blow bubbles, and trying (unsuccessfully) to evade capture.







Later on, after a run over to New Jersey to Babies-r-Us to purchase some glass Doctor Brown bottles (we hope she is gentle with these!), Hallie had a grand time playing with Adam's toys and by the time she came in, she was streaked with mud and crusted with dirt and looked like a fine picture of a happy kid enjoying summer.

Less enjoyable is the eating/vomiting front, alas. I won't belabor this, but suffice it to say that we have had no vomit-free days this week (so our total for the year still stands at 32) and keeping a food diary hasn't demystified what's going on for her allergy-wise. The only thing we can think of is that it takes a while to clear out her system (did this with cow milk last November, too) and we're keeping our fingers crossed that once this, and the current bout of canine- and eye-tooth-teething is over that we'll have some clarity about what's going on.

Food Protein Induced Gastroenterocolitis

I wish there were a cute, easy-to-remember alphabet-soup acronym for this one, but alas there is not. So we are left with the clinical name of the condition that Hallie has: food protein induced gastroenterocolitis. Quite a mouthful (though ironically it means that fewer things can be put in her mouth and, more importantly swallowed).

On Friday, Hallie had a series of patch tests done by her excellent Allergist (good thing we like this division at CHOP, because my sense is that we are going to be seeing a bunch of them over time). She was none to thrilled at the placement of the test disks (largely due to the fact that the smell of a freshly-opened alcohol pad and the sensation of being held down summons up none-too-fond memories of RSV shots). But she did okay with them all weekend (except for the fact that she could not bathe all weekend and had a few major poop blowouts and vomiting episodes, but I shall get to the latter later).

Monday morning, bright and early (like 8am), we brought her in for an interpretation of the findings. She definitely came up positive for egg allergy (no surprise there--she vomits at the mere ingestion of a tiny quantity of egg), and +/- (which amounts to a borderline positive) for barley and wheat (with barley being more reactive than wheat). Milk (cow) was negative, but has a very very high rate of false negatives, so her Allergist feels that clinical observation is a positive determination of cow milk protein allergy. The only disk that was negative (she had six patches done, with one being a blank) was soy, and even that is inconclusive so we need to do a soy milk trial to see if that is accurate. And, oh yeah, she did not react to the blank, so she is not allergic to the plate itself. Just what's on it, I guess.

Sigh. Meanwhile, at Speech therapy on Sunday, the therapist fed Hallie a pureed pudding of cream of buckwheat and fruit. This led to immediate, violent vomiting. At first we attributed this to Hallie gagging on a new texture. But then she vomited more at home that night. And then had another violent vomiting episode (with lots of choking and even turning reddish purple because she was retching so hard and couldn't get air into her system) around noon on Monday, which had me so frightened that I almost thought I'd need to call 911. This was not pretty, but Hallie recovered from it and I bathed her (again) and cleaned her up. But she also ended up with all of the other symptoms from the summer-from-hell-that-we'd-like-to-forget: congestion, sneezing, allergy shiners, eczema on the eyelids, constipation, stinky hard off color poop, etc. When I described these to the Allergy folks when I called them today, we got our formal diagnosis.

Anyway, it kills me that we've been poisoning Hallie inadvertently and attributing all of her GI woes to reflux and dysphagia. Both of these conditions go hand in hand with food allergies, as does gastric (and hence truncal) hypotonia (low tone in the GI system that leads to very slow peristalsis and hence delayed gastric emptying). And, interestingly, there also seems to be a casein and gluten connection to Apraxia. So maybe we've figured out a big piece of the puzzle here. (Then again, maybe not: decoding what's going on with Hallie is a bit like peeling a very, very large and complicated onion).

And so, tonight, on the way home, I stopped in at Whole Foods and bought up a host of gluten free snacks (since we have to get rid of Veggie Stix---anyone need any? we have three bags of them--as they contain wheat starch). This is sad, because Hallie just started to ask for "sticks" by name (she has added the words "a stick", followed by her approximation of the sign for 'please' to her vocabulary this week). Fortunately, I did find some (extremely expensive gourmet) potato sticks that don't have gluten and also bought a few other things we can try. Worst comes to the worst, we add them to our very large collection that I have come to term 'the graveyard of foods rejected' (we could feed many countries on this stuff, but only if their citizens can tolerate milk and now various grains).

We suspect that Hallie is fine on fruits and veggies since she doesn't seem to respond to these (the IgE tests come up negative for a lot of these allergies, which makes defining the nature of them maddening). And hopefully we'll be able to figure out if there are any other sensitivities as we proceed. And hopefully we'll be able to do this without putting her on an elemental formula. We'll see. We're definitely going to try to keep a food diary to see if we can determine what, if anything else, triggers a response in her. And we'll keep our fingers crossed.

Sharon and I tried to think about what we fed Hallie back in December that led to that two week vomit-free period, but we can't really remember. We did have two vomit-free days in a row last week (Friday and Saturday) but we don't remember what we did or did not feed her then, either.

Anyway, for you science junkies, here's a description of this from Pediatrics (Vol,111 no. 6, 2003: 1609-16). And stay tuned for more on this, because I'm pretty certain that we haven't gotten to the root of this onion quite yet:

Dietary Protein Enterocolitis
The symptoms observed in infants with dietary protein enterocolitis seem similar to but more severe than those observed in protein enteropathy. Because both the small and large bowel are involved, the term "enterocolitis" is used. The disorder must be differentiated from nonallergic causes of enterocolitis (eg, infection, neonatal enterocolitis). Cow milk protein is the most common cause, but approximately half of patients also react to soy. A variety of additional foods have been implicated, including rice, oat and other cereal grains, and poultry. During chronic or intermittent ingestion of the causal food protein, infants may experience such severe vomiting and diarrhea that dehydration, lethargy, acidosis, and methemoglobinemia may result, and infants may seem septic with high peripheral blood polymorphonuclear leukocyte counts. Resolution of symptoms occurs after appropriate dietary exclusion. A distinct feature of this disorder is that reintroduction of the causal protein leads to a delayed (2 hours) onset of dramatic symptoms that has been used to confirm the diagnosis by oral food challenge. Confirmation of the allergy includes a negative search for other causes; improvement when not ingesting the causal protein; a positive oral challenge resulting in vomiting/diarrhea; and evidence of gastrointestinal inflammation through stool examination for blood, eosinophils, and a rise in the peripheral polymorphonuclear leukocyte count over 3500 cells/mL. Caution is needed when performing oral food challenges because approximately 20% of reactions lead to shock. The diagnosis is usually made without biopsy, but colonic biopsies in symptomatic patients reveal crypt abscesses and a diffuse inflammatory cell infiltrate with prominent plasma cells; small bowel biopsies reveal edema, acute inflammation, and mild villous injury. The mechanism underlying this disorder seems to involve a milk-specific T cell response with elaboration of the cytokine tumor necrosis factor- that may also account for some of the systemic symptoms. That several foods are often involved may reflect a more global problem in immune tolerance for these infants. The disorder is not associated with IgE antibody (but a small subset of patients may eventually establish IgE antibody responses). Considering the high rate of co-allergy to cow milk and soy, treatment with a hypoallergenic formula (casein hydrolysate) is suggested and usually effective (if not, then an amino acid-based formula can be used). It may be advisable to delay the introduction of other allergenic foods, especially grains, in these children. Treatment of acute reactions (reexposure) may require fluid resuscitation, and administration of steroids has been suggested. Most infants outgrow the allergy by age 2 or 3 years, but some seem to maintain hypersensitivity into childhood. Because resolution must be proved through oral challenges that can induce severe reactions, evaluation must be undertaken cautiously under supervision in a controlled setting, usually with intravenous access in place.

Speech Therapy

Hallie began private speech therapy on Sunday. We consider ourselves very fortunate that our therapist was able to get approval to see her twice weekly for 12 weeks. Hopefully, she'll be able to extend this because it's really clear to us that this is not a problem that is going to go away in 12 weeks. Indeed, I suspect this will stretch on for years and, unfortunately, at this juncture point, it's unclear where or how this story is going to turn out.

In other words, the shoe that we always expected, appears to have dropped. Very quietly.

So, this is not a fun post to write. Normally I'm either an optimist or I am indignant and a fighter where Hallie is concerned. I'll do anything to get to the bottom of what's going on (figuring out the reflux puzzle, figuring out the allergy puzzle, not taking no for an answer or accepting easy fixes that specialists throw at you when I know my kid better than they do, etc etc). This talking puzzle, and to some extent, its corollary, the eating puzzle, have me stymied and dejected. I don't even know what to say anymore. How appropriate.

So therapy is very hard for Hallie. Talking is very hard for Hallie. That's what it boils down to. She is so clearly unable to make her mouth and lips work to make sounds, even when she knows those sounds and makes them in other contexts. For example, Hallie has begun to imitate the word "good" (sounds like "guh" or even just a glottal "g" stop sound) at home. If we say "good" (as in "good girl"), Hallie says "guh" almost every time. But when the therapist put her on a swing at the office and tried to get her to imitate "go" ('guh' would have been perfectly acceptable), Hallie simply and clearly could not do it. Over and over again. The second we said "good" she'd go "guh" and if we said "go" she'd look at us, and try to move her mouth, and nothing would come out. The good news about "go" is that we eventually managed to get "go" (guh again) out of her on the park swing last night after we both got home from work. And now we can probably go with it, so to speak, but this is so, so hard for Hal.

The word that had her so frustrated and broke our hearts was "ball." Balls are one of Hallie's favorite things but for some reason she cannot sign them and she cannot say "ball." She says "buh" for Big Bird, Bert, and Bubbles---they all sound the same and are just consonants, really, but we'll take that. But not for "ball." And the therapist would not give her a ball until she said and signed something and so over, and over again our little girl was upset, and frustrated, and at the end literally threw up her hands in the air and did not know what to do. We'll work on ball at home, too, and eventually she will get it. But this is so hard and our hearts are breaking.

I think it'll go like this for every word at this point, and they are not really words but mere approximations. And then we will need to fight to turn them from mere statements into modes of communication (nothing except Sesame Street functions that way yet). And then we will need to add vowels, and syllables and build language.

It's like teaching someone who had a massive stroke how to speak, I imagine. And not knowing if they ever will.

So we are just sad. We'll fight this, of course, no matter what it takes and we will get her to speak however best she can and communicate with us in whatever mode works, and love her, love her, love her throughout this process, but this morning, and last night, and the day before have been very hard.

On a positive note: we did have a four day vomit free streak (March 31-April 3) and yesterday was sans spew, too. So we are up to 30 days of no vomit this year, four of them being in April. May the streak go on!

These Shoes Were Made for Marching!

April 27th is a red-letter day for our family.

We will be marching as Family Team Hallie & Olivia in the Philadelphia 2008 March for Babies, organized by the March of Dimes.

We are grateful for the work that the March of Dimes has funded. March of Dimes funded research into surfactant replacement therapy back in 1993 that changed the world for micropreemies---indeed, the findings of this study made it possible for micropreemies like Hallie to be alive today.

Hallie and Olivia were born at 23 weeks and 4 days. The traditional borderline of viability is 24 weeks because it's then that the fetus' lungs are mature. That doesn't mean a 24 weeker can breathe on his or her own; far from it. But at least the 24 weeker has enough lung tissue developed to eventually be able to do that with a lot of help. Surfactant helps the lungs open up and inflate. But micropreemies cannot produce it on their own. March of Dimes funding helped the scientists perfect its production artificially and design protocols that are now used across the world to save babies like Hallie & Olivia.

But the March of Dimes is doing more than this; they are also trying to prevent preterm labor and delivery. We don't know why Sharon went into early labor with our girls, but we love to imagine a world where no one else has to go through what we went through and where fewer babies like Olivia succumb to the devastating consequences of their prematurity.

No family should have to go through what we went through: the loss of one child, and 122 days in the NICU with our other child. Years of special equipment and intensive therapy. Fears about the imminent dropping of the other shoe. And a very, very high likelihood of delays, disorders, and disabilities. And we know that we are among the lucky ones: Hallie is doing far better than any of her medical team members believed she would ever do. Hallie's outcome is nothing short of miraculous and we are grateful for that every single day. But we want to do more to prevent what we and every other family listed on our blog has experienced. And your support in this effort is critical.

So please help us in our mission to make people more aware of prematurity and its sequelae and to help fund research into preventing it and treating the consequences of it. Hallie has put on her marching shoes, of which she is very proud. So should you. And if you cannot march with us at the Art Museum at 8:30am on April 27th, then at least send your credit cards a-marching. You don't need to give a lot; small donations really add up. That's why Franklin Delano Roosevelt started the March of Dimes in the first place---if everyone alloted a few dimes to this cause, it would go a long, long way.

Click on the badge below to join our team or to fund our cause! After all, can you really resist this face?

Yo, Five! No Jive!

Bree, Lincoln's mom, just tagged me, so I guess I'm it!

5 Things Meme

The Rules

1. Each player answers the questions about themselves.
2. At the end of the post, the player then tags five people and posts their names, then goes to their blogs and leaves a comment letting them know they've been tagged and to ask them to play along and to read your blog.

What I was doing ten years ago...

1. Editing my dissertation to turn it into a book so that I could get tenure.
2. Pondering moving back from Lancaster, PA (where I teach) to Philly (where I went to graduate school).
3. Applying for funding to go to Russia for the summer for research.
4. Writing lectures.
5. Reading a lot more than I do now.

Five things on my to-do list today...

1. Laundry tasks, including remembering to transfer the wash I started at 7am to the dryer.
2. Making up a batch of goat-milk formula for Hallie.
3. Mailing off a batch of rejected Nutren Jr that someone bought from me on E-bay.
4. Picking up Hallie's meds from CVS.
5. Sorting through the last pile of too-small Hallie clothing (she is now firmly in the 18-24 month size for pants and 18 month (marginally) to 2T for tops.

Five snacks I enjoy...

1. Bread. I like bread way too much. Especially hot crusty artisan bread. But my favorite bread came from a bread truck a friend and I ran down in the middle of the night around Christmastime in Leningrad in 1986. Very warm and yummy bread and I hope the driver pocketed the dollars we gave him for it.
2. Cookies. I have a weakness for these and rarely buy or make them anymore.
3. Ben and Jerry's frozen yogurt (especially Cherry Garcia) or Edy's Double-Churned light cookies and cream.
4. Diet Coke (is this a snack? I hope so!)
5. Red Wine in winter and White Wine in Summer. Now that has to be a snack!

Five things I would do if I was a billionaire...

1. Fund research into Pre-term labor and support the families of babies who were born too early in whatever way they needed.
2. Open a restaurant of my own after going to cooking school.
3. Consider going to law school.
4. Have a big urban house in Philly that has a master suite for Sharon and a big playroom for Hallie and a gym and a pool table for all of us.
5. Read a lot more. Preferably on a beach during a very long vacation. And travel. OK---that's probably six.
.
Five of my bad habits....

1. Fidgeting
2. Nail biting
3. Interrupting people and trying to finish their stories
4. Procrastinating (especially playing Texas Hold 'Em or reading blogs)
5. Shopping (and overindulging Hallie in general).

Five places i have lived....

1. Brooklyn, NY. Born there.
2. Upper West Side, NY. Went to college there.
3. Philadelphia. Grad school and now---does that count as twice? It's weird but I have lived here just as long as I lived in NY.
4. Lancaster. For three somewhat long years.
5. Cambridge, England. Junior Year Abroad

and 6. (sorry to break the rules) St. Petersburg, Russia for about 2 years if you add it all up.

Five jobs I've had....

1. Camp counselor for 2 year olds when I was 14-16
2. Donut salesperson. Ranks as the single worst job I've ever had---this was the summer before College and I managed to get fired and get the chicken pox (from the kids lining up for donuts) all in the same week. Biggest trivia: turns out that Dunkin Donuts mix is Kosher and that this awful donut store used it but charged more for the donuts because they were kosher. Grrrr.
3. Student Coordinator of Disabled Student Services at Columbia University. A very interesting job, and oddly relevant now.
4. Teaching Assistant. No training, just thrown to the wolves.
5. College Professor. Still being thrown to the wolves!

My 5 tags:
1. Laura
2. Trisha
3. Stephanie
4. Cora
5. Heidi

Hallie at the Drive In

Wow. It's really spring. What better time for a quick zip over to the Drive-In (Home) Theater and a few hundred episodes of Sesame Street? At least that's what Hallie thinks!

Anyway, today was gorgeous--around 70 degrees--and even if I had to work, and got home on the typical late side (around 7pm), Sharon got home early enough (kind of has to, in order to relieve Ami) to take Hallie to the park to hang out with the neighborhood kids. It had rained this morning and early afternoon, so the slide was wet and Hallie stuck to it (making it harder for her to use her blossoming pushing-off skills) but apparently she had a great time and tuckered herself out (despite her three hour nap this afternoon). It seemed like Hallie had a great day, and we'll know better in the future when Hallie can actually tell us something about it.

But we're not complaining. Hallie has been imitating like crazy this past two weeks, and especially over the past few days, and we're (ok--at least I am crediting this (in part) to adding one capsule of Nordic Naturals EPA to her two capsules of Nordic Naturals 3-6-9, and constant speech drilling. Hallie has been saying the following words, on command, this past week:

"kitty" (her favorite, never has lost this one), 'teddy', 'diaper' (sounds a bit like 'pah' sometimes), 'good' or 'good girl', 'cookie' (another favorite), 'buh' (big bird), 'seh-see seet' (sesame street), 'buht' (bert), 'eh-die' (ernie), 'day-dee' (baby), 'am-ma' (mama), 'igg-ee' (piggy), and of course, 'wah-dah' (water). There are probably others, but those are the ones that come immediately to mind. And the thing is: the repetition and imitation is fluid and on command. This has never been the case before, and we certainly hope that it lasts. (And none of this has replaced signing; in fact, tonight, Hallie signed an entire book -- Goodnight, Baby! -- to me as I read it. It was way cute. And very smart, since she has consistently chosen this book as the book she'd like me to read to her when she wants to go upstairs to take her bath and go to sleep and we moms are dilly--dallying).

In this photo, Hallie is saying 'buh'.


Doesn't she have a great pout? I am certain that she will use it against me!

Anyway, we are heartened by the speech gains and are hoping that the SLP with whom we are trying to work privately does manage to get us approved by our session on Sunday. If not, we'll call out the big guns (our fab pediatrician will write all sorts of letters and make every effort to use his diagnostic tool bag to get us services). But we are hoping that Independence Blue Cross doesn't make us get ornery (or cross) with them. It ain't pretty when the mamas get their feathers all ruffled.

In other related news: the eating is getting a bit better. Hallie has thrived on her diet of Veggie Stix (those meltable snack food items and NOT carrot and celery sticks in the raw) and has mastered the art of making it through about 20 of these at a dinner time seating, meaning that we get to sort of eat as a family these days. And even more impressively, she ate 5 whole Scooby Snacks graham cracker sticks tonight at dinner. This is a whole 60 calories, folks, and replaced an entire jar of baby food puree. And even her purees are getting a bit more sophisticated (she ate two jars of Stage 3 this week). So maybe we're seeing some oral progress across the board. Who knows, perhaps we will free up that big shelf filled with tiny jars some day? I'm not going to run away with my fantasy of having more space in our cupboard just yet, but I am pleased that Hallie does seem to be making a bit of progress in terms of texture and that this progress has gone on long enough for it to seem real as opposed to totally fleeting.

And, finally, sort of in terms of progress, I do have two more vomit free days to log in to our tally, one in the month of March and one in the month of April. Hallie did well on Saturday AND Sunday (making it another one of those two-in-a-row sort of victories), but Monday ended up being a wash out (huge post dinner vomit) for reasons utterly unknown. Today was a good one, however, and so we got to start off the month of April on the right foot (or mouth...). The kiddo is still not pooping up to our standards (or her GI tract's standards, at least) and so this continues to be of concern. We have her on Reglan, Miralax, Pear nectar, and taking a pretty large dose of flax seed oil. We are also giving her Calcium/Magnesium and the fish oils. All of that should promote easy pooping. Yet not in our girl (who will be embarrassed to read this some day. Sorry, baby!)

We're hoping that our eagerly-awaited upcoming visit to the Allergist (what the hell kind of parent can't wait until an Allergist pricks their kid's skin?) will shed some light on what's going on here. And it might provide some insight into the small patch of dry skin/eczema that Hallie has on her thighs and, more intermittently, on her eyelid. It's hard to know what's setting this off, but we'd like to get some insight into this so that we can nip this problem in the bud. There's a strong family history of allergies, asthma, and eczema (and all three seem to go hand in hand and are to some extent related to diet), so I am not sure we can place the blame here on microprematurity. But whatever is going on, we mamas really want to get at the root of things so that we can fine tune our very fine toddler.

(Not such a) Big Gulp

I know that I'm posting twice in one day and that this is actually a fairly unusual thing. But as time goes along, I like to try to segregate out the medical from the non-medical posts. It's nice to have a post or two that are not related to diagnoses, therapies, doctors' visits, and the like (though it's harder to segregate out the vomiting).

Anyway, yesterday started out with a bang...or at least a shot or two. Hallie had what will probably end up being her last RSV shot (synagis), for which she was belatedly approved (at least the doctors who do the insurance approval were smart enough to approve it, even if late: doing a risk analysis on a 23 weeker for the cost of the synagis (around 3000 dollars a shot at this point) versus the cost of hospitalization (much more, obviously, especially if you add in the likely oxygen and even possibly CPAP and/or ventilation) is a no brainer. So we plucked Hallie rudely from her bed (our futon in the 'futon room', which is distinct from our glorious yet underutilized bed in our bedroom) and raced off to get her pumped up with synagis. She was not impressed. To say the least.

She did, however, put on more weight so we were impressed. She 's now a robust 25 lbs. 9 ounces, and still at 50% on the actual charts. She is also taller than 33 inches (informal measuring at home) and this accounts for her extended reach and also places her at at least 50% in height, actual.

Then it was off to do the long-awaited (long dreaded) swallow study at CHOP. We had to be there at 10:15 and for once were on time. This was our first mistake. Radiology had an emergency and was running 45 minutes late. So they did not take her until at least 11:15 (perhaps later; I just know that Sesame Street was over, which was also not a good thing. Everything was copasetic until the closing bars of Elmo's World and went steadily downstream from there). By the time we got into the room and did the baseline x-ray (which Hallie hated since it reminded her of the ng tube upper GI of seven months ago...or at least made her feel claustrophobic), Hallie was near hysterical. She was starving (her last bottle was at 11 the night before), grumpy (11 am is naptime especially when she is up early), and now they wanted her to be strapped into a chair, sandwiched between x-ray plates and to eat barium-laced food. No way, Jose. So suffice it to say the solids we tried were thrown clear across the room (that girl can throw) and just about every time we tried to get her to eat or drink she melted down in a way that is not typical of Hallie. We did, finally, get two glugs of unthickened barium (mmmm....) and two swallows of baby food into her. That was it. It took over a half hour to do this, and that half hour felt eight times as long. Anyway, turns out she is not aspirating on thins from the straw, that she is doing fine on baby food, and that we can thicken at our discretion. The excellent SLP who has been doing these studies (and did the FEES back in January) thinks that it's because of the resolution (i.e., control) of Hallie's reflux. Anyway, since we are better-safe-than-sorry proactive mommies, we intend to keep thickening the bottle at night and nap time because her suck is MUCH stronger then and she gulps a bit, and we'll back off from the rest a little. And it's good to know that when she drinks out of someone else's cup, she'll be okay. Unless of course it contains cow's milk, which is another story. But at least we'll know that she's vomiting due to allergy and not aspiration.

On the vomiting note: Hallie has had three more, non-serial, vomit free days in March. I think we're now up to a total of 8 vomit free days in March, and I believe 25 for the year. I want to try to keep a log of this. I know that sounds insane, but there you have it: I am a counting freak.

If you've made it through this post (awake), scroll down for a much more fun post with cute pictures below:

Silly Hallie!

Hallie is a very silly toddler. Some of her favorite games are incredibly silly. Months ago, you might recall, Sharon began to play "where's Grover" with Hallie. This involves making lots of "dah-dah-dah-dah" and "zhip" noises, flying Grover around the room and over Hallie's head and eventually stuffing Grover into Hallie's shirt or pants and making her remove him. She still thinks this is great, but she's branched out a bit:




Another thing that Hallie really enjoys is being smushed, preferably by Karina. This works out well because Karina, as the daughter of a former Rugby player (who gave this up after getting her PhD for a career as a consultant), Karina's got tackle holds in her genes. So she loves to run up to kids and hug them...and squeeze them...and knock them down.



Hallie adores this (though we make sure that Hallie's belly is not full when this happens because I think neither of the kids, nor their horrified parents, would enjoy any of the outcomes of this scenario terribly much).

So, after deeming enough Rugby to be enough, we had Karina modify the game a bit:




Suffice it to say that being dragged along the floor by Karina was nearly as much fun as being smushed by Karina.

Hallie's other latest greatest form of silliness involves climbing up on the table next to the couch and diving back onto the couch when we tell her to get off the table. An alternate form of this game involves climbing into the changing table portionof the pack and play located on the other side of the couch and trying to dive off of that one (to parts unknown). Now, technically, this brings her into compliance with the command "get off the table" or "no climbing into the changing table" or what have you. So we have to concede this one. But it doesn't comply with, or facilitate, our goal of keeping Hallie's head in one piece, remaining out of the CHOP ER and silly, frivolous stuff like that. So, over the past two days Sharon and I have each, independently, had to remove Hallie from the couch, stand her up in the living room and give her a talking to that went something like "You are not to climb on the table/changing table because it is dangerous and you will hurt yourself and so you are now officially banned from doing so". Needless to say, and as we both admitted readily to one another, the talking to made us feel better--like we were doing something proactive and being good parents and removing her from a situation that was dangerous, yada yada yada. It appears to have a less than effective impact on Hallie, who continues to climb. So, we need to start thinking about discipline, and hoping that the crocodile tears that this induces will not result in yet more vomiting.

Speaking of crocodile tears, along with ramped up silliness, we've also had ramped up terrible-two-tantrumness lately. Hallie loves to put my shoes on her hands and feet---which is okay with me---but lately she's also taken to trying to pull whatever remains of the fleecy inners of my clogs out of the footbed and EAT it. (Why does she eat fuzz and fluff and cardboard and not food is beyond me). This is not OK. My feet are none too sweet smelling and I cannot imagine that my clogs are anything but repositories for stinky stinky germs and she will not, under my watch, eat my shoes. I feel ridiculous even typing this. So I took them away. And she bawled. It was quite silly, really, and I did not give in, but I did suppress my desire to laugh at her. Eventually, with redirection she forgot (temporarily) about how good my shoe fluff tasted. Eeeeewwww.

This Week in Hallie's World...

Well, I've done it again: I've fallen behind on blogging. I thought that this would be a good week to catch up on things given that it was spring break, but that seems to have not been the case. I've been busy grading (still more to go...deeply depressing endeavor), reading for class, and trying to invent creative and provocative classroom exercises. This all translated into a virtual blogging drought.

Anyway, here's the recap on our lives.

Last Sunday, we headed down to the Shore (as we lovingly refer to the New Jersey coastline) to celebrate Aunt Laura's 40th birthday. Sharon pulled a couple of all nighters putting together a masterful montage of Laura's finest moments (including some very good representatives of the variations of hairstyles for which the 80s are famous) but somehow we managed to not take a SINGLE electronic photo of the birthday girl herself. She had a great time and everyone loved the video, but spawn-centered parents that we are, we left the shindig with dozens of pictures of our own kids and none of Aunt Laura.

Suffice it to say that Hallie had a lovely time at the party. There was a nice open dancefloor that we were not using (since this was a brunch event) and all of the kids (various of Hallie's cousins, some of whom she had never met before) commandeered it as a play zone. Hallie gleefully entered the boisterous mahem and was particularly enamored of playing with Alex's truck, engaging in games of catch, and, especially, running back and forth like the whirling dervish that she is:






Needless to say, on Monday Hallie was totally wiped out and she's been needing to sleep a whole lot all week which makes us think that another growth spurt is imminent. All of this is to say that our prized possessions are in even further danger of being toddler-handled by Hallie and will need to be moved even further out of reach.

We also replaced our under-utilized Rainforest Jumperoo with Hallie's new art desk this week, and Hallie has been having a blast coloring at it. Mostly she colors herself and sucks on the markers, but some of her creativity has made it onto paper:



Otherwise: this week has been relatively uneventful. Hallie did have two more vomit free days in a row, flanked by other, alas, more typical days where she spewed forth in one way or another. And today (yes, Easter Sunday) we had an evaluation at a Feeding and Speech clinic that is covered by Sharon's insurance. The therapist seems knowledgeable (deals with both swallowing issues and apraxia) and, sort of a schlep of about a half hour and one state away. Sharon's insurance has no limit to speech therapy sessions AS LONG AS Hallie qualifies (and even with her complex medical history, who knows yet whether we'll face a fight to precertify services). This is far better than my awful insurance that allows 24 sessions combined of PT/OT/Speech per year and only at facilities totally inappropriate for a toddler who can't swallow or speak correctly (they wanted us to call the Sports Medicine team at Pennsylvania Hospital or a rehab center for adult stroke victims, which are the only two facilities within 25 miles that are in-network. WTF?????).

Anyway, the therapist feels that Hallie clearly needs some help with both of these things but that, with the correct help, she'll be a totally different kid in terms of eating and speaking within 6 months or so. We're happy to give it a try. There's so much research to do, and making sure we're on top of all of this, as well as Hallie's other medical concerns (GI, Pulmo, trying to get her covered again for Synagis--which she was dropped from this month but there's a chance the new insurance will cover it, Allergy, and her regular Early Intervention therapy appointments) means that we have a lot to juggle. Hallie really is such a sport about things and is totally happy to hang out and play in doctors' and therapists' offices, and in this we're lucky. She did not have to end up being as good natured as she is, and even with her toddler tantrums and testing (yes, terrible twos have begun!), she's the sweetest and greatest kid in the world and we're trying to be the best moms to her that we can be.

Enough rambling---now off to join the wife and daughter at Karina, Mark, and Vanessa's for Mark's yummy burgers. We LOVE our neighbors...having dinner cooked for you half the week (as well as the stellar company) totally rocks!

Meet our New Speech Therapist

...none other than 2 year old Karina, our next door neighbor.

Happily, she has agreed (I have it in chalk!) to a mere 10 dollars an hour.

Seriously, though, she is the one person (toddler) who can get Hallie imitating. Her trick? Imitating Hallie. She does a very nice job of it and only occasionally gets frustrated by the antics of her slightly younger client. See for yourselves:



Actually, Hallie has been having a bit of speech explosion. She has been babbling and for once it sounds like really baby babbles. And while she still loses words (doggie is replaced by its corresponding sign, as has her 'read it' command and 'cookie' is nowhere to be found), she's also been gaining new ones. Her latest is 'wah-dah' for water and I am reinforcing it by turning on the water and letting her wash her hands in it. She loves it, but I do need to get her a stepstool since my back is killing me from lifting our 25 and half pounder.

More later on our fun visit with the family for the joyous occasion of Aunt Laura's 40th birthday.

Funky Hair Day

This morning when Hallie got up, she looked a lot like Rod Stewart at some point in the 70s:




Notice that she not only is sporting the spiky punk rocker look in front, but also a very well developed mullet in back:



Apparently it dried like this after her bath last night, and in a gravity-defying feat of amazing hair trickiness, it stayed like this all day. I kept explaining this to other parents at the playground; what I really should have done is dressed her in all black, put a mini leather jacket with safety-pins in it on her, and found a nice pair of size 5.5 doc marten high tops.

The Ides of March...

Well, not quite, and not quite as ominous sounding as Shakespeare made them seem, in any event.

I just had to post a quick post tonight: we've had 2 vomit free days in a row! Yay! That makes it 20 for the year 2008 so far, which isn't too horrible (especially when placed in perspective of the last six to eight months of 2007). Indeed, almost a third of our days have been vomit-free so far this year, which amounts to a huge savings in terms of the number of trees cut down to make sufficient paper towels for cleaning up after Hallie. My gosh, she's practically got her own Green program going now, doesn't she?

And even more impressive (if such a thing was possible) was Hallie's fluid intake today. Ami really stepped to the plate and stepped things up today. Hallie had roughly 15-16 ounces of milk today, and another 5 or 6 ounces of drinkable goat-yogurt and another 5 or so ounces of juice (laced with miralax---which produced 3 very nice sized poops and one load of laundry that required soaking in Totally Toddler). That's over 25 ounces, folks! A new record, especially since she also ate about 16 to 18 ounces of baby food and numerous Veggie Booty puffs. So not bad at all.

On another note: Hallie has a new word: "Water". This one has lasted about 3 days so far and hopefully will join the pantheon of words-that-stay (which includes "Kitty", "Teddy," "Buh" (for Bert and Big Bird). She began saying "wa-dah" on Sunday night, and in a very cute way, does it along with the sign. It's a bathtub word and since Hallie loves her bath, she's more vocal there than she is at most times (I think she feels comfortable there....I wonder whether it's entirely unorthodox to do Speech Therapy with a naked child splashing in the tub). And she's been babbling more than usual. So maybe we're making
a bit of progress. Either way, I'm going to be spending a bunch of time on the phone with the three insurances that Hallie has (don't ask) to make sure we have all the codes and such right so we can get her into private therapy and, hopefully, get the cost of this venture (over a 100 an hour, and no one really seems to take insurance) covered to some extent. And then we have to hope that it works. But meanwhile, we have on our hands one very delightful toddler who delighted us even more by not
putting up a fight about sleeping tonight (the past three or four nights: sheer horror. Good thing she's cute even at 1:30 or 2:00am when she's racing around her room tearing it up!).

On that note, yeah, I know it's late, so it's time for me to get to bed, too!

Happy Birthday, Karina!

This weekend, Karina celebrated her second birthday. Time really does fly around here. We can still remember visiting Vanessa (with some yummy Capogiro gelato) right after Karina was born. I was so afraid to hold her--Karina was less than a day old and I'd never held a baby so small. Little did we know that in three short months, Hallie and Olivia would redefine "small" for us in ways unimaginable at the time.

Anyway, Karina had a stellar birthday weekend. On Friday night, the whole commune went out to Chuck-e-Cheese for dinner and entertainment. The bigger kids (Ethan and Karina are both two, so they get to be called big kids now) had a blast, Hallie had a pretty good time, but was a bit overwhelmed---she enjoyed going on the merry go round and riding in the Barney car and the like and kept signing 'more' for us to deposit another token, but refused to smile the whole time. We're going to try to get her out more so that we begin to redress this social fear to whatever extent we can.





Here's a great picture of Karina with her daddy, Mark, who is very intensely at play:


Hallie got to play with Karina on Saturday night, too, and was thrilled at the prospect. In addition to the Chuck-e-Cheese adventure, the girls had an impromptu playdate on Friday afternoon as well---they had not seen each other all week at that point. Basically, the more Hallie sees Karina, the more she wants to see Karina. I hear the feeling is quite mutual and that Karina spends considerable time at home asking to see Hallie. Hallie doesn't use words to ask for Karina, but she goes over to the party wall that we share and bangs it, or goes to the door and rattles it and begins to whine. It's pretty clear what she wants. And every time I take her down the block on foot or in her little car, she walks up the steps to Karina's house and begs to be let in. Very cute.

Sunday was Karina's big party day. This is the sort of smile that entering Karina's house elicits from Hallie:



All the kids had fun playing and being read to by various adult guests:





And Hallie had a great time devising alternative uses for chopsticks (the rest of us used them for very yummy dim sum):


And while Hallie's stay at the party was cut a bit short by an altercation with blue jello (her difficulty with this texture really makes me think that a big part of her eating problem is sensory in nature), she did get to see Karina for dinner again on Sunday and Monday nights. Hallie was in seventh heaven and we have some great pictures/video footage of Hallie having an extensive conversation with Karina last night. Generally speaking, Hallie is happier to talk to Karina than to anyone else in the world and we are beginning to think that we should put Karina on the payroll as our private speech therapist. Karina may or may not want this job, though. While she adores Hallie, Hallie did boink Karina on the head pretty hard last night while leaning in to kiss her best friend (and I also think Karina may be a bit creeped out by Hallie's slobbery open mouth kisses, to boot!). This had Karina beating a hasty retreat when Hallie leaned in again a few minutes later. Nothing like a good Hallie boink (the kid really has a hard head!) to make you summon all possible self-protective measures against future head boinking.

I'll try to get around to uploading the video later on, since it really was a nice exchange (and hopefully we will be able to hear all of Hallie's very soft chattering throughout the conversation). But meanwhile, I just wanted to close by saying that Hallie has definitely been speaking more the past couple of days. This may or may not be related to the new fish oil dose (10 ml), and the upsurge in vomiting also may or may not be somewhat related to this increase. But she has been speaking more and last night kept repeating "wada" (water) and doing the sign for "water" over and over again. Let's see if we still hear it today. "Mama" is being used very sparingly and "kitty" "whas dat?" and "teddy" seem to still be the most stable words in Hallie's rather thin repertoire. Meanwhile, we got the write-up of her speech eval, complete with a long list of goals that neither of us can imagine Hallie achieving, and certainly not within the next three months. This was pretty shocking and depressing but we're doing what we can to get her into private therapy as quickly as possible and we're reading up on alternative techniques for providing therapy to an apraxic child and these might be helping some, too. We'll take it one day at a time, hope we can make some reasonable progress and pray hard that the words Hallie is saying become second-nature to her and that we hear them all the time.

On the eating front: no progress. Last week was one of the worst refund weeks ever (Sunday was a record bad day for 2008 with 5 separate vomit-cleaning occasions and the average has been twice a day for the rest of the week). We're not really sure what is going on, but it could be the extra calories in Hallie's food, it could be too much in the way of banana and not enough in the way of liquids to move things through her system, but whatever it is, we are officially tired of it and want it to go away so that we can rest a little and not have to refeed our kid five to seven times a day. And in terms of feeding, our new OT will try to work with Hallie on this some. So Friday we have a date with some mashed potatoes and rigatoni. I can only imagine what that's going to be like, but at least I'll have a professional around to keep Hallie distracted while I clean up the mess!

To not end on such a sour (stomach) note, I'll leave you with a cute picture of Hallie's belly. Our girl can now completely undress herself as long as there is no onesie involved, and perhaps even if there is. Isn't her tummy cute?

The Weigh-In

The weight is back! Yay! We just visited Hallie's pediatrician for a weight check and found out that all of our hard work this past two weeks has really paid off---Hallie gained a pound in 10 days. Woo hoo! Let's hear it for 30+ calorie goat milk formula and 6 ounces of baby food per meal. She now weighs 25 lbs. 5 ounces (an all time high for 'playing weight').

She's still snarfly, though, which sucks, since it means that we are back to our daily refunds. But her ears are clear and she's clearly not feeling ill. It's either a cold or teething (she seems to be getting her first year, second year, canine, and eye teeth all at the same time. Lucky us!). But either way, she's weathering things well and we're glad for it.

We also talked to our pediatrician about our speech concerns and, while he feels that Hallie is still a bit young to warrant serious concern, he understands where we're coming from, and, as he put it, we need to get her the best possible therapist because she's an amazing little girl and deserves the best. We love this about our pediatrician. We pretty much love everything about our pediatrician. Anyway, so he is all for me drafting the kind of letter that will work with our insurance, he'll add in a lot of serious-sounding medical stuff that makes our argument compelling, and that's all we need to do. No neurologist (he doesn't think that hooking her up to a bunch of electrodes and subjecting her to a lot of tests will tell us anything that will prove helpful), no developmental ped. Just one really supportive doctor. This rocks.

Otherwise: Hallie's sorting skills keep getting better and better everyday and she's beginning to pretend play: she's feeding me and her babies from her favorite Duraclear margarita glasses (that are still proving to be indestructible, amazingly enough). This is very cute. She is also all about cuddles and kisses right now. And she did the cutest thing this evening. We were watching one of our new Signing Time DVDs (volume 10: "My Day", which is already one of my favorites) this evening after we got home from the pediatrician's. The video opens with the kids waking up and beginning their day. The second sign Rachel teaches us is "good morning." Well, Sharon and I kept on repeating 'good morning' and learning the new sign. Meanwhile, Hallie raced off to her bookshelf and found her book "Good Morning, Little Bert," and brought it over to us. As Telly would say, "she is sooooo smart!" Of course we proceeded to read it and SIGN it to her. I know it's only at the preschool level, but heck, our signing is getting pretty good too!

Finally, it seems like Hallie is about to step down to one nap a day. This is not our call, but hey, we all know who calls the shots around here and it ain't us.

Cute pictures later on...it's way too late to fiddle with downloading and uploading!