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Sunday, October 21, 2007

Thinking Outside the Box: When Solving Turns into Managing

According to Hallie's Feeding Clinic team at St. Joseph's, the only real problem that Hallie has is reflux---her laryngomalacia, her paralyzed vocal cord, even her intermittent colds would be minor nuisances without the aggravation that is being caused to her by reflux. She'd be eating normally, they think, if it were not for the evil reflux. Without reflux, we might not even be seeing our pulmonologist still; after all, Hallie's lungs have sounded amazingly clear and looked great in spite of the fact that they were not quite functional when she was born and they complicated her treatment during those critical first weeks of her life. We tend to agree with the sage folks at St. Joe's. The other night, Sharon and I were talking about this and other stuff and we realized that, up until this point, we've been handling the reflux just like we'd handle any other problem in Hallie's (or for that matter, our own) life: let's do lots of research (it's kind of sweet in a dorky way that we each decide upon the search terms independently, do the same searches without knowing it, and then compare notes and realized that YET again, we've crossed paths on the World Wide Web without knowing it). After the research phase, we go to the implementation phase, believing that, if only we light upon the correct formula, we'll manage to lick this thing once and for all. Then, when the solution fails, we take whatever empirical evidence we've gleaned from the experience back to the research table and begin again. That's pretty much how we handle most things in our lives, and by and large this has worked for Hallie, too. Back in the NICU when she was not acting herself, we had the entire medical team supporting our efforts (well, mostly supporting them) and this is how we ended up pushing them to figure out that an exponentially higher dose of dexamethasone had been prescribed to Hallie to get her off of the vent and onto CPAP. That instance alone corroborated our sense that our approach was correct and that if we can't figure out a solution to any problem, it's because we haven't looked hard enough, thought about it the right way, etcetera etcetera.

Well, we've just realized that we need to apply this tactic to our methodology, too: our search for a solution to this reflux problem is not proving possible. We've now decided to shift gears into management instead of looking for a cure. There is no one or two or three things that we can do to make the reflux just go away once and for all. Instead, we need to figure out how to alleviate the pain that it causes Hallie, maximize her comfort, and minimize our own distress at the fact that, like just about every other micropreemie I know, Hallie does not conform to some magic timetable out there that says that things will happen at a certain moment. Reflux will not just disappear at age 1 year adjusted just because the books and tables and pediatricians tell us so.

Honestly, I think we both feel a bit relieved. There will be days of better and worse eating. There will be days of more or less vomit. We need to take our cues from Hallie and if she is having a hard time with dairy products, we need to ease off of those for a while. And so on and so on.

This doesn't mean giving up; not in the least. We have learned a lot along the way in our search for the cure to Hallie's reflux. We know that congestion is one of the worst things for her reflux, and this means that we need to avoid ear infections and the such. On top of the no brainers like washing hands and making everyone we know wash theirs, too, and keeping Hallie away from sick kids and the places that they might play, placing ear tubes will (hopefully) help. And our magic-making pediatrician proved himself dreamy once again: Thursday morning (the morning after we had been in the office with Hallie at 7pm), Sharon got a call from his office saying that we had an appointment at one of the CHOP satellite specialty care offices for 10 am on Friday with the ENT. We were not thrilled at the wait at the King of Prussia office, but who can complain when we were done with both the consult and an audiology test (Hallie's hearing is basically fine; she did not cooperate for the whole test but she obviously hears in most registers and there was good inner ear activity until she decided to pull out the probes and stick them in her mouth) by 1pm? Anyway, Hallie's anaesthesia consult is on Tuesday (the one doctor free weekday in a 13 day period) and the actual procedure is scheduled for the 29th. So hopefully this will help minimize some of the sinus/eustacian tube congestion issues that Hallie has been having (note: these in fact may be congenital and not prematurity-related---most of Sharon's family is predisposed to yucky ear infections, sinus infections, drainage problems etc).

We have also learned that the thickening of Hallie's feeds helps enormously, and I recommend to any parent out there dealing with a refluxing and retching baby to consider trying thickening the baby's feeds.

And we've also learned that constipation is to be avoided at all costs. We finally managed a breakthrough (so to speak) on this front (or bottom) on Friday and Hallie's eating picked up a lot thereafter and she seemed a whole lot less uncomfortable.

Anyway, we're not giving up entirely, but just shifting how we think about things. And we still hope that some day the reflux improves, at least, and that Hallie enjoys eating more. Our feeding team doctor has given us some hope that this might happen; in her experience, she has yet to work with a neurotypical child who has not at some point been able to be taught to eat conventionally. This might take work, and it's definitely not as easy as "just give your kid cheerios/chicken nuggets/pizza and s/he'll eat!" It's just a matter of getting Hallie to a point where she can be taught that food is not her enemy and doesn't have to hurt. This may have to wait until she's older and better able to express what does and does not hurt (right now we guess) but hopefully some day we'll be able to put the reflux in a box, and not have it rule our lives, even if we still have to respect it and the role that it plays in Hallie's life.

Meanwhile, we need to be content that Hallie is ingesting her purees orally, that she can be convinced to drink her bottle, even if she still mostly sleep-eats it, that she has learned to sip on the honey bear straw and can drink a little thickened formula or juice that way, and that for us, solid foods = gerber puffs and not any of the foods that "all children" eat. We've learned a lot along this journey and one of the most important things we've learned is that eating is a complex and difficult task that should not be taken for granted. Hallie is sort of on the middle of the spectrum: our pediatrician thinks that she is the hardest feeder he's seen; our feeding clinic doctor thinks that she's one of the easiest cases she's dealt with in a while. It's all about perspective, and we're trying not to lose sight of that either. We're better off than some, worse off than others, and most importantly, we are where we are and we need to work with what we have.

That said, after her big Friday afternoon blowout diaper, Hallie started to feel a whole lot better. Not only did she have a good eating day on Saturday (I think she ate 4 ounces of yogurt, at least 12 ounces of other purees (quite possibly more than this, even), a few gerber puffs, and about 20 ounces of nutren with fibre). She was also a lot more playful. "Playful" for Hallie=messy for mommies. Yes: we do appear to live in a toystore. And yes, it's a very disorganized one. Here's a typical debris field scene:

Hallie doesn't seem to mind swimming with her toys:

And even though 'playing' still mostly involves throwing toys around the room (admittedly, sometimes chasing them around hockey-puck style, which is very fun to watch), Hallie has begun to learn to use some of her toys in more conventional manners. For instance, she loves to get out her little ball and play catch with one or both of us. And she has begun to put two blocks together (albeit inconsistently; these are still mostly toys for throwing) and attempts to do her puzzles (she knows which piece goes where in some cases, but not how they get into the appointed cut out slots). Mostly, she loves to play with her Fisher Price peek a block giraffe and roll around gumball machine and especially with her baby grand piano. Sharon and I have yet to figure out the pattern that turns on particular songs, but Hallie has accomplished this goal quite nicely. She has one or two favorite tunes and she consistently gets them to play by working the correct sequence of buttons and knobs and keys. This makes her very happy. I leave you with my favorite recent image of Hallie. The smile on her face says it all:


Cora said...

So, so true about living and dealing with reflux. I try to remind myself of these exact things on our bad eating days. Maybe next time I'll come back and read this post!

I'm so glad that you've already been in to see the ENT and have surgery scheduled already. It sounds like you're really lucky to have a great ped.

And don't worry, our floors look just like that at the end of the day. Our living room has been taken over!

Billie said...

Abby and Sharon,
I am glad you guys are at a point where you are feeling some relief, in terms of not being able to "solve" all of Hallie's problems. I know exactly what you are talking about, and god knows how many times John and I have had the same talk. We have good days and bad days. There are still days that a bad mealtime can bring me to tears, but there are increasingly more good days and good meals. We try to roll with the setbacks as best we can, and to maintain a certain level of tentative sanity for H and E's sake, as well as our own.

I really feel for you. That year between 1 and 2, when they were supposed to be learning to eat like "regular" kids was extremely draining. The sooner you become okay with the fact that "Hallie is going to do what Hallie is going to do when Hallie is going to do it" the better:) At least that works for me when thinking about H and E. But it oh so hard sometimes.

Positive thoughts your way! We could use some in this direction too as we navigate yet another obstacle on our preemie journey. I'll blog about it as soon as I get the guts!

23wktwinsmommy said...

First, I love the picture of Hallie with her big smile! So darling.
We are switching pediatricians for many reasons and this will give me a different perspective on how S&E are doing with how much they eat a day. It will actually give me SOME perspective since our pedi never cared to ask how they eat or what they eat...she is overly unconcerned with everything. You and Sharon make me realize that maybe I should be a little more concerned about how much S&E eat. What you mentioned Hallie ate seems like a lot, although Hallie is 4 months older. It's just nice to be able to come visit your blog and get an idea about weight and eating habits because sometimes it seems like the kids are doing so well with their intake but it can be hard to know how much they SHOULD be eating. So anyway, thanks for your always informative posts on food intake :) Because hearing of the FT 3 month old baby who is already taking 8 ounces at a time is really no help to me...

Kellie said...

I am glad that you guys have such a supportive team to work with Hallie on her reflux and feeding issues. Reflux is a terrible disease when it leads to feeding aversions and pain. I hope the tubes help Hallie...they certainly helped Carson. I wish more doctors understood that GERD doesn't stop at age 1 in micropreemies and they need to take alternative steps to help our children.

Eli just finished up an upper GI and is going in for an impedance study in a few weeks. He is showing all signs of refluxing past his fundo. will be a glorious day when our kiddos are past this!

Big Ali said...

The picture of Hallie's smile is too cute! Thanks for the encouragement about my boy. The only thing I can offer you is that the best parents in the world realize that it's the toddler who calls the shots. I know you guys want her to eat the chicken nuggets and pizza like normal kids, but hey if she wants to eat fruit purees and formula at least her heart will be stronger when she grows up.

Sarah Furlough said...

I am so sorry that feeding is such a struggle for Hallie, and her mommies. I think no one can truly understand what reflux does to a child if they haven't actually seen it for themselves. Cooper's is awful, but not nearly as bad as Hallie's.

Billie gives great advice for trying to maintain as positive attitude as possible. I am hoping that with time, Hallie can learn to enjoy food more as time goes on. Though I know in the meantime, you'll certainly have your good and bad days.

I am keepign Hallie in my prayers for her upcoming surgery. I am hoping that will at least give her some level of relief.

Hang in there, Mommies! You are doing a great job!!