Well, here we are, it's December. Hard to believe.
The past few days have been exhausting ones. It's a miserable time of the year if you are teaching (or a student in college; I empathize with those of you taking classes and not just teaching them). But, honestly, even more time consuming and distracting to me is the feeding front here at home.
As all of you know who have been following our saga, Hallie has been 100% orally fed and growing well since her last week or so in the NICU way back in September 2006. That's great. There has also been a lot of progress on the feeding front with Hallie and I don't want to minimize that. She has accomplished the following:
-in terms of liquids, she has gone from bottle struggles all the time to sleep feeds nearly all the time to drinking most of her milk (yes, there is nary an entry without the words "goat milk" in them) while awake, and the majority of it from her honey bear cup, and not from her Dr. Brown's bottle. Even most of the bottle feeding is while she's awake now---yesterday, she almost entirely refused to nap and hence took 3 ounces from her bottle (a lot of it while holding it herself) at 11:15 am (she did eventually fall asleep but the phone woke her at 12:45) and then she drank 4 ounces from her bottle while awake (and never did fall asleep) at 4:30ish. It takes a long time for her to do this and her suck is still relatively poor, but the fact that she'll drink liquids awake constitutes major progress.
-in terms of solids, she has gone from nothing (back as late as July) to three solid meals a day. Until this past Monday, we were able to get at least 4 ounces and sometimes as much as 5.5 (depending on the calories---we aim for around 100 or more per meal) in her at every meal. The food, however, is far from age-appropriate. She is stuck on Stage 2 foods and is fed entirely by us. We do give her a spoon with which to play, but we do the feeding. And all meals must be accompanied by Sesame Street and never happen at the table but in her high chair in front of the entertainment center cabinet. Any variation from this and we have a disastrous meal, so this limits our ability to be out during mealtimes. Plus we no longer eat as a family (even in front of the TV---hey maybe we should all get high chairs; that'll solve that problem). We grab food when we can and if we can and our lives are run by Elmo and Company. I am not complaining: after all, she is orally fed, but the question is: how long does this go on for, and will we ever make progress.
From time to time, we have tried food experiments. Once, Hallie ate bits off of a Hershey bar and loved it. The second time we tried this, she vomited profusely.
We've tried really mushy mac and cheese and that worked once or twice, in small quantities, but we've backed off of the dairy because we suspect that she may have an allergy to cow milk. Same thing with cheese, which is the only thing that she has reliably wanted to eat when given to her (this has been true for months now. Small pieces of easily mushed mozzarella, american, or string cheese works for her and for a while was a reliable source of 25 to 50 calories a day. With the dairy issue, we've stopped this).
And there are more strange cubes and containers of homemade food in the freezer than I care to admit: I am a cook, so naturally I try to cook for my daughter. Food that comes in jars and that is not identifiable to me has always made me suspicious. So I tried homemade avocado, chicken in gravy, squash, sweet potatos, brocolli and cheese, etc. It's hard to make one feeding at a time, so the rest goes into jars and cubes and ends up taking up valuable real estate in my freezer that is already home to other strange things like chicken carcasses, rinds of parmesan cheese, little packets of chipotles in adobo sauce, etc).
Last week, we managed to soften fruity cheerios in goat milk (second mention!) for around an hour and she ate about 20 of them. We were going to try this again, but we were told that we were skipping stages (read below).
Which brings us to where we are now. On Monday, we saw Peggy Eicher at St. Joe's, and she felt that we needed to move forward with the feeding, but that we needed to do so in a more orderly, staged manner. Great. Hallie ate the brocolli at the feeding clinic that was a table puree (the stage toward which we are supposed to be working). Then she vomited. That night, at home, she ate whatever concoction I fixed for her, but the next day refused to do so after vomiting it up the first time. Ditto on Wednesday. Thursday, we had a vomit free day, which was great. Yesterday: not so much. She happily ate her fruit and oatmeal table puree, finished eating, I finished congratulating myself, and out it came. For dinner, she drank 3 ounces of her formula (to avoid a third reference!), ate half an ounce of veggies pureed in chicken gravy, and spewed it forth. Feeding her after this was a major struggle. She did, however, enjoy sitting on my lap and dipping her fingers into Sharon's pasta sauce and licking them, and then of course, smearing them all over the place, and licking them again. This came post dinner, and as long as she didn't vomit (never to be taken for granted, alas), that was fine with us. It's the first time in a long time that food was fun for our girl.
Where do we go from here? I think we're going to try to cycle the jarred purees and table purees and see if that works better, and then once we have a vomit free day or two or three, up the amount of table purees. Some say that that might work better than the shock treatment. At least it'll keep her growing. And I think we're going to try to come up with plans (ideas anyone?) for more 'fun' food sessions like the pasta sauce on the lap episode of last night. I hate, hate, hate the idea that Hallie will grow up hating food. Food is such an important part of culture (and admittedly I might just like it too much) and so important to sociability. As someone who is Jewish, my sense is that all of family life is and should be organized around food. It pains me no end that this is something that is lost on her. And not being able to eat anything but smooth baby purees that come in jars also means that it's nearly impossible for Hallie to feed herself and develop the important skills (fine motor, social, etc) that come along with that. This will make it impossible for her to spend time at preschool or daycare or whatever once she is old enough and well enough to do so. Unlike so many of our kids, she doesn't shy away from putting food in her mouth, and she will want to grab and eat other kids' food (she already picks up Karina's discarded peas and raisins) but this will present a choking hazard to Hallie well beyond when it is supposed to unless things improve, and I can only imagine how much of a pariah she will become when she vomits all over the place as a result of the panic that ensues when she takes solids into her mouth. Already, last week, one of our young friends (who is three), asked me why Hallie vomits all the time and expressed disgust at this. It is disgusting. And I hate to think that my baby, who already has so much ranged against her, will be teased at school for this, too. (Let's not forget that it'll be hard enough for her already: not only can't she eat right, but she is the daughter of a same-sex couple, has scars on her tummy that will probably never go away and may even get more noticeable, and a big scar on her back from the PDA, and little ones on her hands, feet, and face from IVs, the pulse-ox, taping of ET tube, etc, and she takes lots of medicines. That's a lot, already, and there are no guarantees that nothing else will go wrong. She is doing fabulously where gross motor skills are concerned, but her speech delay is pronounced, and who knows what the future holds for us?
I know that it is my tendency to look at things in the broad, long term (I am a historian, after all, and my personal brand of history privileges the longue duree over the small incident), but it's hard not to worry about where we are, and where we are going.
Anyway, if any of you have any advice for us, please let me know. Meanwhile, I will just try as best as I can to refocus my attention on the good stuff: Hallie has accomplished a lot. And she is one of the happiest kids I know. Last night, we dragged our napless princess (who fell asleep just as we parked the car) to Macy's (the old Wanamaker building) on Chestnut Street. We caught two minutes of the Christmas Light Show and need to take her back for that. But the goal was to take her holiday card photo. We set up shop in front of a big Christmas tree in the building (not the store itself) and tried desperately to capture our extremely smiley, very happy moving target (seems like the two second powernap worked). She had a ball walking (practically running) from the tree to us adn scared the devil out of us by racing to the escalators. She had a grand time and it's this stuff upon which I wish I could manage to focus more, and not on the food and the fears and the struggles.
I hope that some day she reads this, while eating a sandwich or something, and laughs at me and says, "mom: of course I was going to eat. Why were you so afraid? I always did do things my own way." And if you do read this, honey, sorry about all the mentions of vomit. And, oh yeah, of goat milk, too.