Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, January 24, 2008

Hunger Strike Again

It seems Eliza is yet again on another hunger strike. No particular rhyme or reason for this. She is not sick, not teething, not constipated. None of the usual reasons for a decrease in her appetite. This all started earlier in the week, but really if I think about it, the weekend was not that good on the eating front so I should have known something was up. She is now down to an average of 600 calories a day instead of the recommended 1200 (1000 calories a day is "OK" but not optimal). Frankly Eliza's caloric intake would be a lot less if she wasn't on the 1.5 kcal formula and tolerating Benecalorie even in the little yogurt she has eaten because her volume of intake is abysmal. She is down to 8 to 12 ounces of formula and 2 ounces of yogurt for the entire day.

The decline in Eliza's behavior seems to be related to this hunger strike. Today at the sensory gym I almost just left with her since she could not focus on a single task for more than 30 to 60 seconds, was scratching the therapist, screaming, throwing things, throwing herself on the floor, etc. Just awful. Feeding therapy was primarily filled with her throwing food, plates and bowls, yet oddly at the end of her morning session she suddenly stuffed about 4 veggie stix in her mouth, which of course she spits out since she cannot chew or swallow them. Go figure. Her sleep has been a bit worse than usual, up every three hours instead of five hours. I figure another month of this and one of us is going to have a nervous breakdown.

This week was also Eliza's semi-annual EI reviews. Never a pleasant experience. Although I am painfully aware that Eliza is not eating or speaking anywhere on the level of a 19 month old (her adjusted age) or a 22 month old (her actual age), reading in black and white that she is her speech is on the level of a twelve month old and her feeding is even worse is just a bit disheartening.

On a positive note, she has perfected her ballerina twirl.

7 comments:

Casey's trio said...

She sure likes keeping you on your toes huh? I know how stressful it is for you... cutting down on food and sleep at the same time -yikes. I do like that you ended on a positive note though--it is the little things that keep ya going.

Anonymous said...

I am the mother of a 24weeker born just one month after your Eliza. We are in the process of our evaluations via the Childrens Hospital and EI. Today is our PT eval, next week our speech and neuro/social eval. I totally understand how you are feeling right about now. Some days I just want to throw the covers of my head and stay in bed. I have to say however that Eliza looks amazingly healthy and vibrant. I know pictures don't tell the whole story but her smile shares a lot. Keep going strong and keep doing what you are doing.

Mom of 24 weeker
21 months actual
born 1 pound 5 oz, now 23 pounds

abby said...

OK--at the risk of sounding like a supplement junkie (I feel like one, too, and the fridge makes us seem like we are...), have you thought maybe about some sort of fatty acid supplements? I hear that they can (won't necessarily, but still, can) do wonders for kids with all sorts of issues, ranging from ADHD to apraxia to dyslexia to whatever. I am giving it a go with Hallie, and she seems not to mind it added to her food (though I think you might be able to squirt them in via syringe, too---the dosage that's recommended isn't terribly high, maybe a half teaspoon to teaspoon a day, depending on what you purchase). Anyway, I have no idea if this will work, but what the heck, if you can get it in (and I know that in Eliza's case this is a big 'if'), at least there's added calories (maybe 40 or 50 but still...).

Anyway, I'm sorry that things in your world have been so tough. Increasingly, it's my sense that this microprematurity thing just sucks, no matter how good the outcome *seems* to be. (I just figured that out????) (Of course not).

May this weekend be better for you guys!

Anne, Eliza Grace's mom said...

Thanks for the supplement suggestion Abby. I am more than willing to give it a try. Not sure how to get it in Eliza, but I guess I could sneak it in that yummy vanilla flavored formula or in her yogurt. Is there a particular brand you would recommend? I figure I'll use you as my supplement research guru instead of reinventing the wheel myself :) We are heading to Saba at the beginning of March for three weeks. At this point I just may boil up some stomach bush and see what happens. Today she at least ate 5 ounces of yogurt in two sittings and about 10 ounces of formula.

Katie said...

Well, thanks to my beautiful niece, cousin whatever she is to me because i feel like i am more of her aunt than her cousin hehe i am currently obsessed with the Backyardigans :)hehe...

"we're going into the thick of it" :) Not only do i love that song but i love how she can basically do the same dance as all the insane characters of the show...too freaking cute!!

I'm so proud of her that she perfected the ballerina twirl.

Now that she has more room in the apartment she can dance everywhere! Once we get the backyardigan cds we'll be all set!!

mwuah!

abby said...

After a bunch of research, it seems that the brand most relied on, both in terms of the trials that have been done with kids, and in terms of its reliability (safest, purest, etc) is called Nordic Naturals. We got the Omega 3-6-9 liquid (I think it's called EFA complete in some markets, but I suspect that your NY market is the same as our Philly market). The key appears to be a particular balance of the 3s, 6s, and 9s and GLA. The omegas are more readily absorbable and usable by the brain in fish oils than they are in Flax seed oil, and no one is really sure why this works, but it does for a lot of different disorders that are neural-pathway in orientation. What seems to make sense to me is that so much of these are absorbed by babies through the placenta in the 3rd trimester, which our kids missed. I think they'll need to do a lot of research before they figure out if this is why microprematurity is so heavily correlated with things like sensory integration disorders, ADHD, speech delays, autism, and the like. And we're not waiting to find out... We started Hallie on these on Friday and other than a lot of poop (everywhere---they really do seem to clean her out) nothing yet, but I wasn't expecting a miracle (that would be from snake oil, right?). She doesn't mind the taste though, which is good. We just put 2ml in a syringe and give it to her via mouth 3x a day, but we also tried adding it to fruit, and I think that adding it to yogurt would be fine, too.

Today's eating sounds good, by the way. We had a lot of success with a french fry-and-a-half yesterday, which was marvelous. I am not sure I want to know the calories, though, since I ate more than that!

And I love the idea of stomach bush. What the heck; if it isn't dangerous, why not try it? It's not like the traditional medical world is really helping us figure out what to do!

Anne, Eliza Grace's mom said...

Thanks very much for the information Abby. I found it on the internet and have ordered some to try. Can't hurt, might help is my new theory (kind of like how I, as a somewhat lapsed Catholic, used to view going to confession).

I often find myself havng conversations with parents of full term kids, or people with no kids, where my sentence begins with something like "well that's something the baby would have developed in the third trimester and Eliza didn't have one of those." As best as my research reveals it seems that a huge percentage of sensory functions develop in the third trimester and being taken out of the nice warm and quiet womb and thrown into a hard plastic box with noise, lights and pain just really screws with a baby's sensory process.

I am goign to find out exactly what stomach bush is. One of the med school folks just finished a bokk on Saba bush medicince (whihc of course is sitting in my house on Saba, doing me no good right now). It identifies the plants by their "Saba" names and their "real" names. I'll let you know what the stuff is and if it works, I'll bring some home with me and we'll start a stomach bush farm.

Thanks again.