How Old is Hallie?

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Wednesday, April 30, 2008


That's one of Hallie's new words. Last night, we were coming back from an impromptu visit to the Intensive Care Nursery (sorry, Ellen! We'll try to stop by another night you are on!), where Hallie had the time of her life. At first she seemed a bit apprehensive, but really began to enjoy herself when we sprung her from the stroller and let her run around a bit. She was amazingly good at staying in the halls (as opposed to running into the nurseries and turning off the alarms and such and eating the that she knows how to push 'play' on the DVD player, who knows what havoc she might wreak). Hallie especially liked looking at the 'honor roll' pictures of babies who are ICN alums. And Carol, one of the really fun night charge nurses, was wowed by that Hallie was able to pick out the sole dog in the pictures when she asked Hallie "where's the doggie?" The nurses were all quite impressed with Hallie's advanced running skills (and that she did not slam right into the door after coming repeatedly to some really sharp stops), her signing capacity (we fear that we are turning American Sign Language into some sort of parlor trick for Hallie, but Hallie loves to watch signing and to sign...she has even begun to sign letters and words as she is in the process of falling asleep at night). And we were very happy to have Hallie there in all of her toddler glory because we know that it's not that often that the nurses get to see what a great job they've done... The entire staff of the ICN is truly amazing and we are glad that they are a part of our lives.

It was also very nice to see that the census was way down last night; so down, in fact, that an entire nursery (the one in which the girls were right after they were born) was entirely empty. I know from my micropreemie blog mom group that the number of parents having micros is always getting bigger and bigger but it's nice to see that Pennsylvania Hospital's NICU is fairly less crowded right now than typical. We hope that it stays that way and that all the babies in the unit are doing well.

Back to Hallie's words: we got home and I brought Hallie and the stroller into the house while Sharon went to put away her scooter. The stroller we're using right now, a Maclaren Triumph, is quite light. This is a nice feature usually, but the stroller has a tendency to tip over when devoid of Hallie and when weighted down with bags (which it is, typically). So, right after releasing Hallie from the buckles, the stroller tipped over and I said "Woah!"

Hallie immediately replied "Woah" (sounds a bit like "Row!") at which point I cheered, so she kept saying it. Then, after Sharon came into the house, I told her what Hallie had said, and Hallie went over to the stroller, which I had picked up, tipped it over, and went "woah!" She kept on using "woah" all night long and today as well, so we are hopeful that this word is with us for the long haul.

Hallie is also now saying "chee" (for "cheese") and smiling for the camera, and is beginning to identify some more animals by name. She knows what sheep look like and calls them "shee" and, the other day, when I was reading one of her favorite books, "Brown Bear, Brown Bear, What do you see?", Hallie not only correctly pointed to each animal when I said its name, but, when I got to the page that has a yellow duck on it, Hallie said "lello dock" (I know I mentioned this in my previous post, but wanted to elaborate). We are thrilled beyond belief, and Hallie is awfully proud of herself, too (as well she should be). So, if, as is likely, Hallie decides to rip apart her Brown Bear board book, you can bet I'll be replacing it post haste.

Speaking of proud, we're also proud that Hallie just had another 2 vomit free days in a row. That makes 38 so far this year! Feels like some of a record!

No cute pictures, alas, to upload tonight but I hope to take some on Friday when I am home with Hallie all day.

Tuesday, April 29, 2008

Hallie's Week in Review

I guess we'll start at the most recent first, and then move our way back through the week.

First piece of news: After a hellacious ten or twelve day vomit-ful stint, Hallie just came off of FOUR days of no vomiting in a row. Tonight, sadly, that record was broken at dinner when we probably gave her too much to eat and drink (about 3 ounces of juice, followed by 2 ounces of milk and 6 ounces of puree) and she was having too hard of a time clearing it out of a system (read: she has been backed up once more). Still, that brings us to 36 days in 2008, which doesn't quiet preserve our 1/3 of the time without vomit goals for the year, but we'll still take it. It's amazing how much calmer we both are and how much better our relationship is when we are not constantly on edge about vomiting.

Why was she so good the past four days? Because her pooping was better. Now, one theory has it that eliminating all but pears, goat yogurt, goat milk, and, now carrots from Hallie's diet makes her digestion faster.

That's one theory. Another theory suggests that the really bad day that we had on Tuesday was not just any old GI bug but Fifth Disease and that this, even in our delayed gastric emptying kiddo, made it easier for her to poop. There is certainly evidence in this direction.

We came up with the diagnosis of Fifth Disease after Hallie developed a bright red rash on her cheeks and lighter ones on her neck and legs and arms on Friday. The rash comes and goes, and this is what it looked like on Sunday (not the worst of it, but we did not take pictures of the worst):

Fifth Disease was probably what felled us, too, but adults don't develop facial rashes from it. (And once the rash comes out, the child is no longer contagious and the rash itself is not painful. It's a cruel irony not to know you have a problem--just a low grade fever maybe, and some fatigue and joint pain--until AFTER you have been contagious for some time.

So this probably explains what happened Tuesday. We were looking for something exotic, or some preemie-related ailment. Instead, Hallie had a very common childhood illness.

But not all of last week was consumed with illness. Indeed, Hallie was feeling pretty good most of the time, and the weather was lovely, so we spent considerable time in the park, swinging and sliding and trying to steal older kids' balls.

Hallie spent an equal amount of time playing with the neighborhood kids on the sidewalk in front of her house. Karina was out on her tricycle and Hallie took a turn. At first she had no idea where to put her feet, but Karina showed her by putting them in the correct position. Hallie's steering and pedaling skills still are sorely lacking, but she'll get there!

Here's a lovely picture of Hallie on Karina's trike and Karina on Hallie's Fisher Price bus:

Later the same day, Hallie tripped a bit on the sidewalk and got her first ever scraped knee. It's sort of amazing that it took so long to fall this way, but Hallie is generally pretty well coordinated and so she usually remains upright during her super fast running down our block.

Here are a couple of pics of Hallie's poor knee. It's only now beginning to heal and the scab is really bugging her.

And, lest I forget, we had a great, if abbreviated March for Babies. Team Halliie and Olivia raised over $2800 dollars for the March of Dimes. We thank everyone who contributed to this very worthy cause.

Here's the small team standing in front of the March for Babies banner:

This shot is funny: the innocent passerby whom we coaxed into taking this picture cut off the word "babies" and framed his shot only to include the letter "b" which, for Hallie, is a major word. It connotes bubble, ball, bert, big bird, bird, and probably other words:

Alas, "B' does not mean 'baby.' Rather, 'day-dee' does.

Our walk was truncated--the weather was nasty, my mom (who had come down for a couple of days) could not possibly walk, and it's become increasingly hard to confine Hallie to the stroller for long stretches of time. Nevertheless, we had a wonderful time at brunch and, by and large, Hallie was wondefully behaved.

After the walk/brunch, we headed over to speech therapy. I have to say that i think that, whatever our speech therapist is doing is working. We are getting a whole bunch more speech, including 'yellow duck', 'some' (which is the cutest word that Hallie says, 'tak you' (Thank you), and 'buh-buh' for bubbles. There are probably others that have become part of Hallie's repertoire but I cannot think of them offhand.

However much we're not thrilled with the feeding thing, the speech thing has been excellent so far in getting Hallie to talk more (be it using real words or babbling).

We are so proud of our little girl!

Sunday, April 27, 2008

March for Babies Update

We're in the wee small hours before our big march, and I just wanted to provide a short update to let you know that we've managed to raise almost (but not quite) $2800. That's a bit down from last year (when we somehow miraculously cleared the $4000 mark), but none too shabby.

We'd like to thank our neighbor, Marilyn, for joining our team this year and one particularly generous anonymous donor who wishes to remain anonymous for a contribution of a little more than half of our team's proceeds for March of Dimes. This particular person has been with us all the way, literally through thick and thin on this journey, and we adore him and his loved ones tremendously. Anonymous donor, if you read this, you rock!

Anyway, there's still time to contribute, so please click on the link on the sidebar if you haven't already done so, and wish us luck tomorrow on our walk (truth be told, since it's hard to keep a toddler in a stroller and her grandmother, Bubbe Jean, who came down to visit from NY will have a hard time making the walk, too, we'll be doing an abbreviated version of the 6 miles and celebrating our team's success over brunch. But still, think about adding your 5 or 10 or more dollars to our team's fundraising efforts for this worthy cause that is near and dear to our hearts!

Saturday, April 26, 2008

Every GI Bug Has a Silver Lining

I guess that the silver lining of the GI bug on top of the chronic vomiting of last week was that we essentially got Hallie onto an elimination diet (she was down to just fruit and goat milk formula, and then down to just pedialyte). So we cleared out her system. The past couple of days, all we've fed her is applesauce, pear puree and pear juice, and goat milk formula (we computed her protein intake at 28-32 grams/day, so no worries there and we have her on a good multivitamin with minerals).

Tonight we let her have her beloved snack food (one of the few solids that she handles very well): veggie sticks (the trader joes kind). They contain wheat starch, (along with potato flour, some veggie powders and safflower oil). She ate them great. But unfortunately, within an hour, she had developed patches of eczema and was exhibiting 'reflux'-like symptoms. She's definitely allergic to wheat (though more mildly than to eggs, which leads to wild bouts of vomiting almost immediately; then again, who knows what would happen if she had a lot of wheat at once. I presume the amount of wheat starch in ten veggie stix is quite limited). That she'd have an outbreak after such a small amount confirms the + side of the +/- findings for wheat on Hallie's recent allergy patch test.

Given this, we're going to try one food at a time and see what happens. Next up is soy. Then chicken. (It would be very nice to get a second protein source that is safe). And we'll go on from there.

While it is annoying that she appears to be allergic to multiple foods, at least this might let us get closer to the bottom of the GI problems that she is having. And, I suspect that, since FPIES is closely related to dysphagia, we may be able to get closer to the bottom of the problems we've had with transitioning her to solids. I suspect that this all will end up being a rather slow process, but we've got an endless supply of patience around here (well, almost endless---I don't really want this one tested).

Lest anyone think that the past week has been solely about vomit and allergies and stuff like that, I promise to upload some extraordinarily cute photos we've taken of Hallie and regale you with tales of her very first skinned knee and two championship level terrible two temper tantrums tomorrow.

Friday, April 25, 2008


....a vomit free day for Hallie.

Hallie had a good day yesterday. Grammy came up from NJ to take care of her (Ami is off with her niece, and both Sharon and I had to work). Hallie is on a limited, simple diet of pureed pears, goat milk formula, and some juice. She's doing a lot better and seems to be feeling fine now.

The moms: not so much. As much as it was a Hallie vomit-free day, it was not an entirely vomit-free day around here because, shortly after getting to work (actually, before even going in), the tummy crud hit Sharon hard. She spent most of the morning racing to the bathroom (which inconveniently are located far from where she sits since the closer bathrooms are under construction. Normally this would not matter. But yesterday was no normal day).

Around about 2:30pm, when Sharon started spewing forth from top and bottom, she headed home. (Sorry, Sharon, for spreading TMI about you; think of this as Hallie's revenge on us for blogging about her).

Anyway, I was hit hard around 6pm and the night was pretty dreadful for both moms. We can now totally commiserate with our little girl and completely understand why, under these circumstances, she had no desire to eat anything whatsoever.

Hopefully this will pass for both of us as quickly as it did for Miss Hallie (Sharon is already feeling a lot better; my tummy is still in a pretty sensitive place, in spite of my chugging pepto bismol, but if the trajectory we've laid out for this disease applies to me, I should pretty much be fine by 7pm tonight).

Wednesday, April 23, 2008


Forgive me for not posting earlier; I was napping and then catching up on email and such.

They discharged us at around dawn today after Hallie was given via syringe and later bottle about 5 ounces (5-10 ml every 5-10 minutes) of pedialyte. They wanted us to keep giving this to her all night, but rascal that she is, Hallie decided to fall asleep (out of sheer exhaustion) at about 2:30am. One of the less helpful docs thought we should keep waking her up until she took 8 ounces. He was the same one who suggested at discharge that we give her crackers this evening--never mind that we had repeatedly stated that our kid eats only purees, but she was also wearing a big allergy bracelet that had wheat and barley listed on it; I guess we can give him the benefit of the doubt and assume he meant rice crackers, but still.... A nurse nixed that idea and so, when we'd been there around 7 hours without further vomiting, they let us go.

Hallie's had a few more ounces of pedialyte this morning/afternoon, and as per her pediatrician's advice, has had her morning dose of prilosec in apple sauce and a half pedialyte/half goat milk bottle. All of that has stayed down, so we hope that the worst has passed.

Once this thing has run its course, we'll explore the other issues related to allergies and GI stuff. Our GI wants us to taper Hallie's prilosec dose, but this has us a bit concerned since the reflux is under control, but only just. More promising might be trying something other than reglan. But he also hinted that we'd probably need further testing, and I am not sure how either of us feels right now about subjecting Hallie to that --- she has been through a lot recently and it is getting harder and harder to get her to submit cheerfully to anything (including taking her blood pressure, which had one of the nurses this morning really ornery. We told her that Hallie's blood pressure was fine and that no one tries to take it anymore (which is true; they often get vomited on when they do so they learn pretty quickly). The ornery nurse was none too amused and it was she who decided that it was essential to boot us out of there by turning on all the lights and banging around loudly this morning. But it's a good thing that Hallie did not decide to respond to her rather rough touch by vomiting on her (as much as we'd have enjoyed this on some level) because that would have bought us another few hours in the ER at the very least, and could've gotten Hallie a less-than-gentle IV stick, to boot. Good thing our girl takes after her moms and most of the time knows when to pick her fights!

Do All Adoptive Parents Carry Their Papers to the ER?

...or the indignant rant of a non-biological mom who happily went through a second-parent adoption.

I think it's fair to say that I have carried a great deal of the medical care duties associated with being a parent of a micropreemie. I was there in the NICU for hours (on average 12-18 hours a day) for the entire four months of Hallie's stay, with a large number of nights spent sleeping in the recliners or rockers by her isolette, and before we lost Olivia, ran back and forth between the two isolettes as frequently as Sharon did. And I was there in L&D 24/7 (with the exception of a few times when I ran home to walk Bailey the dog) for the four days Sharon was in the hospital (and would have gladly spent four months doing that, had it been possible to keep Sharon pregnant).

Before the girls were born, we had emergency papers drafted by our friend Josh, who is a lawyer, stipulating that I could make decisions about the girls should Sharon be incapacitated (a very real possibility if an emergency C-section were involved in their birth. Fortunately, this was never necessary, but it seemed to be a prudent measure to take given that we were not sure how the hospital personnel at Pennsylvania Hospital would treat me in such a case.

I was thoroughly impressed with that treatment--the nurses, doctors, support staff, etcetera always treated me as an equal parent to our girls and accorded me a status equal to that of Sharon. That meant, and means, a lot to me (and to us as a family), and is a big reason why we love our nurses, doctors, security and front desk folk as much as we do.

And, up until tonight, I felt the same way about CHOP. Not tonight.

Tonight, we had to rush Hallie to the ER after 7 vomiting episodes that took place between 5pm and 9pm. The kid had nothing in her, her diapers were totally dry, she was obviously not herself (lethargic, uncomfortable, whining, and her color was off) and we knew that we needed to do something fast. So we gathered up our gear and sped over here (where we are now rather uncomfortably ensconced in an ER room, gradually getting some pedialyte in our kid).

We had all the bottles of goat milk, meds, a few dozen changes of clothing between us, toys, Sesame DVDs, and insurance cards. I never imagined that I would require the adoption decree.

But it turns out, according to the surly registration lady (to whom Hallie rightfully took an active dislike), I really did need that piece of paper. Never mind that one of those insurance cards is from my work, where Hallie has coverage under my plan because she is my daughter (my excellent employer allows for same-sex partner and child benefits, regardless of adoption status, as long as you are willing to vouch that you are a family).

So, even though Sharon was stretched out on the gurney-cum-bed holding a writhing and screaming (well, screaming for a kid with vocal cord paralysis) Hallie who was clearly in pain and not doing well, she needed to be the one to sign the paperwork. Turns out that, without my decree, my doing so constitutes a HIPAA violation and isn't good enough for this place.

Never mind that they've got me on file as mom or that I have committed precisely this 'violation' a few dozen -- maybe more --times when I am the only parent there for medical treatment at Allergy, GI, Pulmo, the regular ped, etc.

And all of this leads me to inquire: do all adoptive parents carry their papers to the ER? Or do folks just assume that one man plus one woman plus one baby equals one family, regardless of genetics.

Harumpf. This is not a good night to pull this stuff with me.

Anyway, Hallie is asleep now, finally, after considerable whining and kvetching. We've managed to get 5 ounces of clear liquid in her (apple juice and now the pedialyte cherry we brought with us---the ER actually ran out of everything but the unflavored and this wasn't cutting it for Hallie). We need to get 3 more into her before they will discharge us, but Hallie is finally sleeping and she needs her sleep, too. Hopefully she'll take more when she wakes up, and keep it down, and we'll be free.

Monday, April 21, 2008

March for Babies Team Hallie&Olivia Update

We've been fundraising really well for the March of Dimes these past 24 hours or so. So far, we've raised about $2500 dollars--about 80% of that in the last day or so (one very large donation and lots of really respectable ones), and we've added an important walker--Aunt Renee, who will happily NOT be having a micropreemie (her partner Kim is just over 29 weeks pregnant) but we still have a ways to go. Our goal is to surpass our total from last year, which was over $4000. We're taking a page from recent fundraising endeavors and asking folks to contribute whatever they can---no donation is too small. If all you can give is $5 or $10, that's great with us. If all of us band together and contribute what we can to fight prematurity, then maybe we can make the survival odds for our kids (read my last post) better than they currently are.

So please consider supporting our team. All you need to do is click on the link below:

And speaking of outcomes, Hallie hit an important milestone this afternoon: independent sliding at the local toddler playground (Three Bears Park at 3rd-4th and Delancey). We hung out there for a couple of hours after her nap this afternoon, and at first she was very timid about using the slide and even seemed to backslide (so to speak) in terms of being willing to push herself off of the slide once I positioned her on it. But after a couple of times where I spotted her as she climbed up the steps and toddled over to the top of the slide, she began to do this, and position herself from standing to sitting, on her own. At first she waited for me to climb back down and coax her to slide down but a few minutes later, she began to slide down on her own without waiting for me to get back down to the bottom. She'd sit down, propel herself, land, and then race back over to the steps to begin her climb again, over and over. She must have done this about 25 or so times total. I am so very proud of my independent little girl!

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.

Sunday, April 20, 2008

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.

Wednesday, April 16, 2008

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.

Wednesday, April 9, 2008

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!

Friday, April 4, 2008

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?

Wednesday, April 2, 2008

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.