Friday, March 20, 2009

Go Eden Go!

I thought I should share Eden's progress and recent accomplishments with the world! She is doing so awesome with her sitting and...well, I guess you have to watch to see what else:)

Friday, March 13, 2009

Feeding Micropreemies

It's not fun.

Not. Fun. At. All.

I've been meaning to do a new eating post for a very long time, but every time I sit down to do it I get discouraged and stop. The truth is that it's very complicated and there are no clear cut answers. Actually, there are very few answers at all and after more than four years of doing it I have very little sound advice to offer anyone.

All I can really offer is empathy. Feeding these girls has honestly been one of the (if not THE) most difficult hurdles on our journey, and one that we have yet to overcome.

All in all I think we have made a lot of progress over the past year. But just when I start feeling like we are in a good place with eating and weight gain, something happens (like RSV or another bout of pneumonia) that sets us waaaaaay back and brings all of those terrible, paranoid feelings to the surface again.

Eden had a really bad week last week. She was sick with another cold, which turned into pneumonia again, which in turn led to over a week of severe regression in her eating, and probably close to a pound of weight lost. Now, given that she had just FINALLY surpassed the 25 pound mark, 1 pound lost is a major, major deal to us. We went from making comments aloud about how she seemed to be filling out (as subtle as it was) and seeming overall slightly less skinny and quite a bit more sturdy, to once again noticing every rib and the slightly sunken in look to her face that makes us (John and I) more than a bit edgy and glum.

We feel like we need a plan, but at the same time feel like we've not just exhausted all of our ideas, but also our energy/motivation/want-to. It has been four years, after all.

So here's the last four years in review...

For the first couple of years, the girls drank bottles of Expressed Breast Milk (EBM) fortified with Enfacare formula to 27 cal/oz. When the EBM ran out we switched to straight Enfacare, still at 27 cal/oz. It was never easy, particularly with Eden. We struggled to get 2-4 ounces at a time in the beginning, but gradually over the second year they would drink 3 or 4, 6 to 8 ounce bottles at a time. At their worst we would struggle to get 8-10 ounces in a day, and at their best, Holland might drink 24-28 ounces and Eden 20-24 ounces.

We introduced rice cereal and baby food on the usual schedule and honestly never had any real luck. I can't say that my kids ever finished an entire jar of baby food in one sitting between the two of them. Holland again did somewhat better. Eden always had trouble swallowing pureed foods without gagging, and many meal ended with big vomits making it seem ridiculously pointless and depressing. We relied on the bottles for the majority of their calories for such a long time.

Around 18 months we went to 3 bottles a day, and around 2 we cut back again to 2 bottles a day trying to get them to eat more food. We discovered that they really preferred table foods of all types to baby food, and started having a bit more luck.

Well. Maybe I wouldn't call it luck. We had to bust ass to get them to eat anything at all. That's the truth. For close to two YEARS we had to practically tap dance on the ceiling to get them to eat. They required just the right amount of distraction, without distracting them too much, so they would allow us to put food in their mouths. We tried for months to use positive reinforcement with each bite, and that worked a little bit. Sometimes. But soon we discovered the power of the television. We could put a high interest DVD on and they would become much less resistant to eating. We made progress.

The vast majority of the progress we made was totally as a result of trial and error, and my own background and training in behavioral psychology. Our doctors offered us very little helpful advice, and I didn't really know anyone with older preemies to bounce ideas off of or even to vent to. Since that time I have come to realize that we are SO NOT ALONE in the feeding woes. In fact, our issues have been relatively mild considering what might have been. We had gagging and vomit with Eden, and serious reluctance and avoidance with both girls, but it wasn't every day and through it all they kept eating, even if some days their intake was extremely minimal.

I have read about other people's experiences with feeding therapy, and it seems like a lot of the techniques that other therapists offer are really similar to the things we kind of came up with on our own. So, I like to think that we did okay, even though I have a lot of guilt about all of the meals that ended in tears and utter frustration for everyone involved. Sure, I knew the importance of making meals a "happy time" and didn't want to create a (more) negative attitude toward mealtimes and food, but there were many days when I had just HAD IT and didn't feel like I could take it anymore.

Around this time last year I was really feeling at the end of my rope. Eden was in the hospital in February, and I remember talking to John about "where do we go from here?" I was honestly beginning to consider that we needed either "official" feeding therapy, or we needed family therapy to help us get past all of the negativity we had come to associate with feeding our kids.

We made a concerted effort to back off a little. We knew we couldn't back off entirely, but we worked hard at giving the girls a little more say in the matter and respecting their wishes. We tried to relax more, be more cheerful, stop when they were done, and quit with the outright bribery. It was far from perfect, and we still had an occasional bad meal, but overall things got better.

This past July, when the girls turned 4, we stopped the bottles altogether. It was extremely hard for us, because it was something that was finally EASY. They liked the bottles, drank them without a problem, and still got a good chunk of calories from their high cal milk. But I felt like it was an important milestone because they were getting set to start preschool, and we were starting potty training. I wanted them to feel like "big girls" and I felt that getting rid of the bottles would be good for them socially and emotionally, even though it was difficult for John and I (and Nana!) to see them go.

After stopping the bottles, they both lost weight. I think Holland lost close to 2 pounds, and Eden maybe 1. Their eating, however, definitely picked up.

Nowadays they eat an excellent variety of foods, and neither is what I would classify as "picky." They generally eat 3 meals a day, with 2 snacks in between. We have more good days than bad days, and on a good day I think they eat what anybody would consider a fairly "normal" preschooler diet. They both have particular food that they especially like, and each has come to me on numerous occasions and said the most wonderful words..."I'm hungry."

There are of course, a few clinchers. The most major clincher is that, left to their own devices, they would each eat a bite or two on their own then completely lose interest and quit eating. As far I can tell, they would joyfully waste away into nothingness. Well, of course we can't let that happen, so we end up feeding them almost every bite of every meal. And, as much as they have become accustomed to their routine, they eat best when watching TV, drawing, or playing while we feed them. Meals easily take between 45 minutes to an hour and a half. On average, we spend at least 3 hours a day just feeding them.

When I think back to how things used to be, I can recognize our progress. At times it makes me feel like I should just be grateful for what we have. At the same time, I can see that we have completely stalled in our operations and I am feeling drained of my gusto. Part of me wants to just do what's easy...and I guess that means feeding them in front of the TV for another year or more to see what happens. The other part of me realizes that it's time to move forward. They will be five this summer, and they really should be on track to feeding themselves.

I know what I have to do. I have to turn the TV off, sit with them at the table for three square meals, and just LET IT GO. Don't talk about it, don't give in...just let them feed themselves. I know they can do it. I know they WILL do it. Well....I think they will, anyways. But it's still so scary.

It's scary because they never really regained those pounds lost when we stopped the bottles. They MIGHT regain them by the time their fifth birthday rolls around, but who knows? It doesn't help that each time I get my self psyched up to do it, someone gets sick, stops eating, and loses weight.

I mean, my kid is 4 1/2 years old and isn't even consistently at 25 pounds. What does that mean? Does that mean I am a terrible mom? In denial of the fact that she should have had a g-tube a long time ago and saved myself years of frustration? Or, does it mean that I have saved her a lifetime of tube feeds, and taught her to really enjoy food?

The thing is that there is NO clear answer. I feel like overall I have made good choices considering our circumstances. Sometimes there is a nagging doubt in my mind, but at other times, when I see her scarf down an entire happy meal from McDonald's, I feel better. The thing is that NO one can say that she would be bigger, stronger, healthier, or happier if we had had the tube put in. In fact, it's just as likely that she would not be any of those things.

But for the love of all things holy! What I wouldn't give to have back some of those hours lost to feeding, and to avoid any of the hours still to come...

I'm not sure how much I have left in me.

Wednesday, March 11, 2009

Daddy Dearest

Happy 33rd Birthday John!!!

You don't look a day over 21.

Clearly you don't act it either! (Except when you need to, of course:))

Have a great day. We love you.

Saturday, March 07, 2009

Dancing Queens...In Training!

We've gone to three dance classes so far, and it has been really, really fun. The girls LOVE it, and I am so happy with how interested and focused they are on learning their moves. The dance instructor has been really incredible in her willingness and desire to include the girls and to accommodate their needs. It turns out that there won't be a whole lot of accommodating necessary, because Eden, in her usual style, is determined to do it all. She already has all the moves they have learned so far memorized, and would be happy to practice at home for 2 hours a day, pretending our house is "dance class" and I am her dance teacher:) Holland has been very focused as well and they are making me proud!

They are having a big recital in June, dancing on stage to Beauty and the Beast's song "Be Our Guest", wearing little sparkly maid costumes with feather dusters. It will be adorable I am sure, and so much better than last year, when we went to see my sister's girls dance and Eden said over and over, "I can do that," "I can wear that costume," "I can dance on a stage," and it just made me want to cry.

I'll be crying this time for sure...but for a whole new reason!

Tuesday, March 03, 2009

Winter Doldrums

Blah. That's just how I've been feeling lately. It started with the girls being in the hospital, and the work piling up at my job and around the house. I can't seem to stay on top of it. On top of that this winter keeps dragging on with record snowfall and record number of days below zero degrees, and we can't seem to catch a break with the fevers, snot, and coughs.

John and Eden are sick again, and we are riding the fence the past couple of days with whether or not we should make a trip to the doctor with Eden. It's hard to take more time off from work right now when both of us have so much to do, and when we do take time off the work just piles up even more.

It is wreaking havoc on my state of mind.

When things get like this I wish I could just buckle down and get my shit together. For some reason, I take the opposite approach and just feel like staying in bed, spending too much time lost in the computer, or watching mindless television for mind-warping hours after the girls are in bed. It is completely nonproductive and makes me feel like a lazy blob.

But anyway, that's why I haven't posted much lately.

Because I am a lazy blob.

But...spring is just around the corner...right?

*My kids, as you can see, do not share my disgust for all things winter.

**Actually, I love December. It's just that by March I am DONE.