Giving Thanks Belatedly

I've been meaning to post for days now, but between work (we're screeching in to the end of the semester and my students are not the only ones who feel the pressure to get work done and handed in---or in my case back....on top of doing the normal reading and extra huge amount of grading [yes, I know, it's my fault for assigning it in the first place], there are also a bunch of other things that I need to do for work and that has kept me on campus late a few times this week and is making it likely that this weekend will prove to be a perfect storm of work. On top of this, it's been an emotional week, what with the holidays approaching (always hard for lots of different reasons) and Hallie's eating and GI tract making things a bit of a rough ride for us.

Nevertheless, I did not want to overlook posting our Thanksgiving because it was a very nice one (after we finally got out of the house after feeding and cleaning up the returns on three or four breakfasts and dealing with the fact that Hallie spit up her whole bottle in the carseat and all over herself a mere ten minutes into our hour-long ride to Aunt Laura's). The rest of the day went smoothly, so it's not like there was *nothing* for which to be grateful.

Actually, there was plenty, and is plenty, for which to give thanks. First, our family: since everyone at Aunt Laura's was well, we did, as I mentioned already, get to go down there for the day. The kids were really happy to see one another:



All of the cousins got to spend time with Hallie and Hannah and Adam were beginning to see Hallie as a peer. Hallie even got to play the baby in our game of house (I was the older sister, and Hannah was most certainly in charge). Here's a cute shot of Hannah and Hallie after dinner. Hallie lost pants privileges (not sure why) and looks very chunky in this shot:



And here's a picture of Adam just being his cute, adorable self:



Hallie somewhat willingly even modeled Adam's mouseketeer hat:



Dinner was very nice and both Sharon and I got to eat together at the table for once. Hallie was upstairs on the floor of Hannah's room (we were afraid that the little thrasher would roll herself out of bed) and we did have the monitor on downstairs just in case, but she slept soundly for at least forty-five minutes, which was more than enough time for both of us to eat yummy turkey, stuffing, potatos, and the like.



Hallie woke up in time to be fed dinner, which, in addition to the usual Stage 2 fare, included the filling of the pumpkin pie which she slowly but admirably well ingested. By the time we left (in a turkey-carb coma), Hallie was much more settled than she had been earlier on in the day and we got home without any further refund incidents. For this we were very grateful.

Indeed, we are grateful for so much:
*For supportive family and friends who help keep us (somewhat) sane and grounded in the face of it all, not to mention help us out with all of the awful and long doctor's visits.
*For Hallie's growth despite everything.
*For Ami, Hallie's nanny, who truly loves Hallie and who is helping her learn to nap in her crib, eat from a spoon, and learn the power of the word no. She also teaches her lots of fun things and Hallie very much enjoys the three days a week she spends with Ami and we enjoy the peace of mind that Ami provides us.
*For Hallie's whole team of therapists, who also love her and would do anything for her. Jenny, Hallie's speech therapist, actually went up to St. Joe's with us on Monday, she's that dedicated.
*And most of all, for Hallie, who has taught us so much since she came into the world and especially since she came home. And, no, not all of these lessons were about the fine art of stain removal. Not at all...

Anyway, other than that, we've had quite a week. As I said, we went to St. Joseph's on Monday and it turns out that Hallie has put on even more weight---she now weighs in at a hefty 23 lbs. 6 ounces (the scale might be a bit heavy, but it's no more than a few ounces off). This is good because it gives us some leeway to experiment with table food purees. This is harder than it sounds and so far things have been hit or miss (with more misses than hits) where feeding Hallie is concerned. But we are trying, and hopefully that will help things along. The extra weight means that we are up again on the Reglan dose to 1.5 ml three times a day. Gastric emptying is nevertheless still an issue and we need to try to get this under control to progress on the eating front). This is all very frustrating, but we are trying and hope that at some point things take. I am sure that this will not be my final post on this issue. Sigh.

But to end on an upbeat note: Hallie is now officially an independent walker. She walks all over the place, turns corners, pivots around on foot and dances a bit. It's great, and she is so steady looking on her feet.

And even more importantly: we just finished the day WITHOUT a single vomit. This makes it two days in the last month taht were vomit free, and that is great. I have no idea what tomorrow will bring (come to think of , it it is already tomorrow) but at least we have had a good day.

And on that note, I bid all a good night!

Holy Weight Gain, Batman!

OK---so we are back from our RSV appointment that turned into a 2 hour visit. Hallie was not terribly thrilled by that, and our wonderful, amazing nanny, Ami, got to experience our frustration with the waiting game firsthand. The reason things got dragged out so much was that we wanted to check up on Hallie's congestion, double-check the reglan dosage and make sure she wasn't getting another ear infection.

As always, the visits begin with a naked baby weight check, and this time, we really needed to do a double take:

Hallie's new weight, post 4 major vomits (AKA all food taken in since breakfast yesterday) but with some constipation is 1015 grams. For the metrically challenged, that's a whopping 22 lbs. 6 ounces. Up 12 ounces since last Monday. We figure that excess poop cancels out missed meals, and so the weight is pretty accurate. This puts Hallie at the 26th percentile of the ACTUAL (non adjusted) growth chart for a 17 month old and near the 75th percentile on the adjusted charts. No wonder we can't close her 12 month size onesies anymore!

We're not sure how this happened, but our ped, who used to tell us that there's no way Hallie has allergies, just referred us to an allergist because he thinks the gain is related to her tolerance of goat milk, as opposed to her intolerance of something else (likely cow's milk, but who knows?). So, it's off to another specialist we go. We will make an appointment as soon as we can (which is no longer possible today, given the holiday and all).

The huge weight gain also means that the Reglan dose was on the subtherapeutic side of things (though the CRNP who couldn't use a calculator correctly and who kept mixing up the IV and the syrup mg/ml dosage---not terribly inspiring---at first thought the dosage was too high). So we increased the Reglan from 1ml TID (three times a day) to 1.3ml TID. We'll keep an eye out for any adverse affects.

I feel like we are not just raising a baby but studying for our medical boards. Fabulous.

Anyway, we're both really excited about the weight gain, will play around with dairy-removal from the diet (to the extent possible---she does get her goat milk fortified with enfamil AR, which is cow's milk based) and see if that makes a difference. And in the meantime, we'll keep on keeping on.

Happy Thanksgiving everyone! We wish the very best to those of you who celebrate the holiday in whatever way you do.

EDIT: Vomit number 5 in a row just happened. I hope Ami still loves us after this. We have too much vomit in our lives.

Whee!!!!!

Lately, Hallie has been getting on and off her little bus and in and out of her little roadster. We're trying to teach her that she can navigate the bus around on her own by pushing with her feet, and she has sort of learned this lesson. Of course, the fact that Hallie is now 'driving' has made it kind of dangerous around here:



We're hoping that Daniel over at The Big Tentdoesn't see this shot!

But it's also convenient that Hallie now drives because she can give her friends lifts when they want to go places:



But, as we all know, driving (like playing) can be pretty exhausting, and sometimes friends just need to hang out on the couch and convene with their Elmos and doggies:



In other news: Hallie's second RSV shot is this afternoon and I am not looking forward to it at all. We're hoping that giving her a dose of tylenol in advance will help dull the pain. And, speaking of pain, her first year molars are coming in, and this seems like little to no fun. This, and perhaps the cold-that-turned-into-a-sinus-infection, have her vomiting more frequently again. We actually did have one vomit free day last week---sadly, this is a record for us, as there have been no vomit free days whatsoever between May and last week. We were hoping for two in a row but Hallie decided to get into the drawer under the entertainment unit and ate part of the DVD player manual and then sent it, and lunch, back up. Monday of this past week was a great day around here that involved only one moderate "urp" after breakfast. And Hallie seemed REALLY hungry and totally into eating. Yesterday, alas, not so good: she sent back lots of food and bottles and was generally crabby and miserable. So, either it's the teeth, or the cold, or the reglan dose, or something else, but whatever it is, we're not having fun....

Seven and Seven...

It's Meme Time!

Sarah Cooper's Mom, just tagged me.


Here's the meme:
- Share 7 random and/or weird facts about yourself.
- Tag 7 random people at the end of your post, and include links to their blogs.
- Let each person know that they’ve been tagged by leaving a comment on their blog.

1. I don't really drive even though I have a license (It's been forever since I've been behind the wheel of a car and I have an irrational fear of mixing up the brake and gas pedals if I ever did have to drive). This is an oddity, unless you recall that I am a New Yorker by birth.

2. I have been known to fall asleep in the middle of a sentence. This has happened to me a lot. Not because I'm narcoleptic, but because I never get enough sleep. Often whatever I have been saying for a while before this happens is impassioned-sounding but largely a load of jibberish.

3. My favorite book when I was five or six was a cookbook. I remember wanting to make everything in it because it all looked so good. The recipes? A baked potato; cinammon toast; pancakes.... Those are all the ones that I remember, but clearly I had a thing for carbs even back then. They all seemed SO sophisticated, too.

4. I read my way through my local branch of the Brooklyn Public Library's teen section by the time I was ten. Then I just stole my mom's books (whatever she had taken out that week) and tried desperately to remember to put her bookmark back where she had left it. I doubt that I was successful.

5. My favorite thing to do as a kid was to read books under my cover with a flashlight, sometimes all night long. That was one of my big forms of rebellion. I hope Hallie takes this up when she is older and I promise to feign being upset just so she does it even more.

6. My big life goal as a teenager was to sell original cards to Hallmark. I cannot imagine wanting to do that now!

7. When I was really little I used to fantasize about running away from home. I'd count out my piggy bank and figure out precisely how much white bread and jelly (my favorite lunch food) it could buy so I'd know how long I could last out there on my own. Then I'd put everything together in a little bag and take off. I never got very far because, even though I was running away from home, I knew that my parents did not let me cross the street on my own, so all I managed to accomplish was a few laps around the block. Guess I was pretty rule-bound, huh?

I don't know if these are weird, or even terribly random, but that's all I could think of.

So, now it's my turn to tag:

Heidi
Laura
Stephanie
Bree
Cora
Jennifer
Stephanie

And because no post really is complete without a recent photo of Hallie, here's one we took earlier in the week:


Hallie loves this picture of herself and now insists on looking at her pictures on the camera. She's trying to figure out how she, and her feeding chair, got in there. It's too funny. But what's really cool is that most of the time, when she sees herself, she calls out "Hallie". I could watch her do that all day (and if I do, then she'll know what I feel like after she asks me to read Brown Bear two hundred and fifty seven times in a row!)

Weigh In

Well, we brought Hallie into the ped's tonight to check her weight and to make sure that she was doing ok, ear-infection-wise, even though she has a bit of a cold. Her ears look fine and the tubes appear to be working. And Hallie's new "diet" seems to be working. After a really bad last week of October, things really went relatively smoothly last week. That does not mean we had a single barf-free day (we didn't, alas), but Hallie seems happier, has been a whole lot less gassy and retchy, and is even weathering the cold that she's been nursing since last Wednesday/Thursday pretty well. Much less stridor and mucous this time around. And so, the answer is: yes, Hallie can (and did) gain weight on the goat-milk formula diet. She now weighs a whopping 21 lbs. 9.5 ounces (or ten ounces, depending on which scale you trust), which is the 50th percentile for her adjusted age and around 15th for her actual. This is pretty fabulous. The last time she was weighed, on Hallowe'en Day, she was 21 lbs. 4.5 ounces and had not grown since her last appointment several weeks earlier and and we know that she dropped weight thereafter because she was eating nothing and vomiting everything.

We are also excited because Hallie probably drank at least 5 ounces of her goat milk formula totally awake (a couple of ounces of the bottle, and a few more out of the honey bear). She loves the taste of this stuff. I go on and on about this so much that you'd think I was employed by the goat dairy lobby (I am not, but would be happy to accept an offer if they made me one; I do believe in their product). Anyway, I'm just relieved that the kid is not pushing away her bottle anymore and that she's still growing.

We're not sure how Hallie manages it on under 900 calories a day (our estimate of her intake), but she does. She'll hate her metabolism later on in life, but right now, we're grateful for it. We know that Hallie is an outlier in this respect and we wish that she could pass on her energy conservation strategies to all of her micropreemie pals.

So Proud of Herself

Walking makes Hallie very, very happy. Over the past two weeks, her walking has really taken off. Instead of just walking a few steps back and forth between me and Sharon and collapsing in our arms, she's begun pivoting to return on two feet to the other mommy, and has been sighted walking between two toys or two pieces of furniture (instead of getting down and crawling, or figuring out how to cruise between them holding on). Yesterday, she started walking away from us and towards other people and things. And every time she does this successfully, she gets really, really proud of herself and smiles her beautiful smile. And then tells you all about her journeys---her talking is really taking off with her walking. She has a lot of jargon and we've heard things that sound like "kitty kat", "Hallie," and "bye-bye." We are pretty sure that the final word is really a word, since she uses it after someone has left. It sounds more like "dye-dye" than "bye bye" and we're trying to get her to use it before the person in question leaves the room, but hey, we'll take what we got.



On other fronts: we still don't have a weight on her. We tried to get in this morning to visit the scale but too many kids had signed up for flu shots during the short hours our ped's office is open on Saturday. We'll stop in on Wednesday evening to see how our kid is doing weight-wise. She is definitely liking her new formula better than anything else we've ever given her (at least, as far as we can tell, since she will cry if you remove the bottle from her mouth while she's sucking on it and heading into nap or sleep state). And she's drinking more and more of it awake each day (two to four ounces/day, on average). We credit Ami, Hallie's nanny, for much of the progress there. So hopefully it has enough calories in it to have our kid gain weight...

The one potential complication we face: Hallie's definitely has a little cold. Not a miserable one (yet, and hopefully never). But she is definitely snotty and sneezy and this is probably not helping her reflux. We hope that we can nip this in the bud, somehow. But it is pretty frightening how little in the way of immunity our little girl has. Sigh. Right now she does not sound congested, and we are hopeful that the eartubes will keep that from being an issue this time around. But in the meantime, we are keeping our fingers crossed that this is not going to be a major setback and that it's not going to keep our smiley little girl from growing and making progress.

***EDITORIAL NOTE: Sharon just informed me that Goat Milk does not promote mucous formation the way that cow milk does. This is already evident in her course this time around and may explain why she isn't quite as choky as she normally gets when she has a cold. This alone seems to be reason enough to validate our switch over to Goat Milk, which, by the way, our GI is fine with. As long as she is taking vitamins and getting a varied diet, there's no problem with using the stuff. The only form of 'milk' that they do not approve of, under any circumstances, is Rice Milk because it's not milk at all.

The Belated Hallowe'en Post/Pics

Finally, finally some long overdue Hallowe'en pictures.

Hallie was clearly overwhelmed by the whole process, but seemed to enjoy hanging out in the costume while lounging in her car:


....especially when Elmo was her chauffeur/escort:


They got to meet us with Pooh and Piglet (our neighbors Nina and Grant from across the street):


And then go off with Coner, Benjamin, and their little brother, Adam in search of some loot:


Meanwhile, Ethan's three-week-old brother Cole got to catch up some zzzzzs:


The mommies get to ration it out to...themselves. I guess that there ARE benefits to having a kid who doesn't eat real food!

Next year, I hope to arrange my teaching schedule so that I can be home to Trick-or-Treat with Hallie. Hopefully she'll be able to chow down on some of her loot then, too!

Goat diet proceeds as planned. I am going to try to get her weighed today or tomorrow and will post more on this later if it happens.... Much less refunding (but this is not entirely resolved, alas), though our girl has a bit of a runny nose today....let's hope it turns into nothing.

Goat Milk Recipe

Here's the receipe we're working with for those of you who have expressed interest. This is still a work in progress and might change based on Hallie's needs (a thicker consistency to prevent aspiration, as she aspirates thin liquids and penetrates on some nectar consistencies; calories; etc).

7 ounces of fresh Goat Milk (we've been buying ours at Whole Foods Market for around 6.75 a half gallon---about comparable in price to Pediasure, but less complete of a food, so we add a daily multivitamin to Hallie's diet; it may indeed be cheaper at Trader Joe's and it's definitely cheaper in the condensed variety or dried variety available on line). From what I understand, Goat Milk freezes well and this might be a nice option for those of you with large freezers previously used for breast milk and without a Wholefood or comparable health food store readily at hand. (135 kcal)

2 scoops (level) of Enfamil AR powder (80 kcal)

1-2 tbsp of karo syrup (this adds 60-120 kcal)

3/4 of packet of Simply Thick honey strength (for aspiration due to laryngomalacia/paralyzed vocal cord etc....not necessary for those who can handle normal consistency bottles).

once a day: vitamins and probiotics added to mix.

What I do to achieve perfect consistency is put the goat milk in a stick blender container, then add the AR and then blend until mixed evenly. Then I add the Karo, vitamins, etc and blend again. Finally I add the Simply Thick and blend a third time and transfer to bottles. It seems to keep its consistency very nicely in the fridge.

Each bottle is between 270 and 330 calories and you can reduce Karo syrup as desired if your child does not need the extra calories.

Bear in mind that, if your baby is not doing any additional foods, this may not be a total food replacement. While you do benefit from the added Enfamil AR powder's nutrients, you would want to make sure to check with your doctor and nutritionist to ensure that your child's daily requirements are being met by this formula. Indeed, regardless of whether your child is eating purees, it's worth checking with medically trained folks about this---in other words, this is just what we've been doing and not medical advice.

But I will say this: Hallie definitely likes the taste of this more than other stuff we've fed her, and even if we haven't had a miracle (vomiting hasn't disappeared entirely from our lives), she is a lot happier and not as gaggy/retchy/prone to vomiting on this formula as she was on the Pediasure and Nutren, Jr.

Baaaaaah, Humbug, or Hallie's Got our Goat

Things have been getting better and better in terms of Hallie's intake and Hallie's general lack of refund since Saturday. Her mood has even gotten better (and this is a kid who seemed happy even while she was retching and gagging and vomiting multiple times a day. This is saying something).

What changed? We're not sure, but this is what we are doing and it seems (for now) to be working and hopefully it's not some sort of fluke.

1. Food change. Instead of either Nutren, Jr with Fiber or Pediasure with Fiber, we now have her on a super charged goat milk formula. Sharon felt that part of the constipation issue might have been related to the Simply Thick, and without the Simply Thick, we'd be sunk in terms of her eating orally because we strongly believe (we have a bit of data, and we'll leave it at that) that she is still aspirating on thin liquids. We needed a lot of Simply Thick to thicken the pediasure or nutren, jr. and we felt that even unthickened, she had begun to slow down on stooling on the super rich 30 calorie formulas. Given that she did well on the mix of breast milk with Enfamil AR powder and Karo Syrup that we used to have her on, I did a bit of research on other milks and found a lot of data that suggested that the proteins in Goat Milk are the ones most similar to human breast milk and that they tend to be easier for people in general to process. Given our desperate situation, it seemed worth a try. We started mixing Goat Milk and the Enfamil AR powder (we are also adding in vitamins to compensate for the lower B-s and especially Folic Acid in Goat Milk, relative to the complete nutrition formulas) with a bit of Karo syrup and less in the way of Simply Thick. Hallie loves the taste of it and, in contrast to the other formulas, is also taking more of this during meals (from a straw cup) than she ever did the Pediasure or the Nutren Jr. We estimate it at 27 kcal/ounce and that she is now taking (for the first time in a long time) more than 20 ounces of this a day, on top of her purees (appx 4 ounces per meal, with a goal of an average of at least 100 calories per meal, three times a day).

2. Meds might have kicked in. We are splitting 30 mg prilosec into two doses, mixed with applesauce (morning and night). We are keeping up with the Reglan (1 ml 4 times a day).

3. Hallie is on a firm schedule that spaces her meals, bottles, and naps more effectively. She is napping upwards of 3 hours per day (two naps) and sleeping from 10pm to 7am (roughly). She seems to thrive on this schedule and we are aiming for complete consistency to enhance her happiness and our own. Her last bottle is around 12am and it is still a sleep-feed but we are hoping that we might, over time, increase her consumption during the day and be able to discontinue this. In any event, it sure as heck beats the 3am bottle of yore.

Stooling is now regular, more of the consistency that one has while on breast milk (instead of pebbles, which is what we had been getting some of last week, and sometimes hard formed cakes). She is no longer retching and her gassiness has subsided. She seems happier.

So we are pretty happy. The only vomiting we have seen has been mechanically (mommy) induced: we had one bottle that was too thin (hence our data about aspiration), and one meal that came too quickly on the heels of a bottle (hence our very precise scheduling). Otherwise, no retching, two small wet burps and a whole lot less laundry. And she sounds clear as a bell and has no congestion whatsoever.

Did I mention that we are happy?

Very belated Hallowe'en pics to follow later on tonight...

If a Picture Could Tell A Thousand Words...

This would be the one that summed it all up.

This amazing shot (yes...it is a picture of Hallie in mid-projectile vomit) was captured by our good friend Vanessa a few months ago. Sadly, it just about sums up our life on a daily (who are we kidding...multiple times a day) basis.

This week has been a pretty bad one. Hallie did have her ear tubes placed, is probably teething (she's always teething), and ran a bit of a fever after getting three vaccines during her belated 15 month well-baby (???) check up, during which we discovered that she has not gained much weight at all in the past three weeks (like 2 ounces total, for a grand total of 9640 grams, or 21 lbs. 5 ounces. We know that, after two 300 to 400 calorie days, she has lost at least some of this weight). Anyway, our ped. put Hallie on reglan, which used to scare us but which looks far better than the alternative (a surgical procedure called the Nissen Fundoplication that essentially places a knot in the baby's esophagous that will a. shorten her already too short GI tract and make reflux worse and b. prevent her from vomiting, even when she really needs to do this to clear a bug or something poisonous from her system). Alas, the reglan is not helping Hallie empty her stomach (maybe because she's not eating?) yet and is not having any of its magical anti-emetic effects yet, either. At least it is not having any negative neurological side effects (which is why we were reluctant to place Hallie on it in the first place).

Anyway, after a bunch of projectile vomiting and virtually no food intake, we decided to bring Hallie into the ER yet again. I was hopeful that Hallie had a hairball---yes, you heard it right, a hairball: after all, the kid loves carpet fuzz more than any other food group---but alas, no obstruction (we had to subject the kid to an NG tube to do an upper GI series. Hallie was in serious emotional and physical pain over this particular aspect of our ER visit). At least we've ruled this out.

In the end, what we're left with is a diagnosis of reflux and delayed gastric emptying. We're not sure what caused the flare up and why Hallie isn't able to process food and poop as well as she had been able to in the past. Perhaps it's the antibiotics she had been on in August and September; maybe it's teething (she is veritable drool factory right now); maybe it's the change in formula from pediasure to nutren, jr. to nutren jr. with fiber (and now to pediasure with fiber). Maybe, like in the NICU, she finds it hard to process 30 calorie/ounce food. Perhaps the simply thick is simply constipating.

We've decided to focus once more on diet in the hopes of managing this beast: We're adding probiotics and we're trying Hallie on a mixture of goat's milk (supposedly easier to digest and closer to breast milk than other forms of milk) and Enfamil AR powder (to add some calories and more nutrients), and less in the way of Simply Thick. We're trying to remain optimistic, but that is getting pretty hard to do.

Meanwhile, I bought a lot more laundry detergent, because if there is one constant in our life, that's it.