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.

Friday, February 29, 2008

Another Check Up

Today Eliza visited Dr. G. for her Synagis shots and a weight check. The weeks of the 300 and 500 calorie days have taken their toll and Eliza is no long "almost" 21 pounds, she is back down to 20 pounds 10 ounces, quite a nice weight for a 12 month old, but downright crappy for a two year old, or a 20.5 month old adjusted baby. Her stature and head circumference have remained unchanged.

There is not much that can be done about this for the moment. We leave for Saba on Tuesday and there is a vague hope among Eliza's therapists, doctors and me that something magical will happen on vacation. I am not really holding much hope out for this and will be happy if she can at least get in 800 to 1000 calories a day and not lose anymore weight.

When we return at the end of the month Eliza has a fun filled week of seeing the endocrinologist, the GI and her pediatrician. Hopefully once we all meet we can come up with some new and improved game plan. The progress Eliza has made on the feeding front has been good when you look at where she was a year ago, but she still does not know how to chew and has great difficulty swallowing food. Since the problem is a combination of things there is no really easy answer, or even one answer that would address the entire problem.

Eighteen months of explaining this to people has really started to wear thin. I think I may get another sign to hang on her stroller (next to the one that says "Please Wash Your Hands Before Touching Mine"). The new sign would read something like "When Mommy Says I Only Eat Yogurt, It Means I Only Eat Yogurt." Do you think that might stop people from asking if Eliza eats McDonald's Happy Meals?

Also, can someone explain to me what people mean when they say "well she looks healthy." It definitely does not come across as a compliment, as in "wow you're doing a great job keeping this kid looking so good despite her starvation diet." Is it some sort of insinuation that Eliza does not have a significant feeding issue because she couldn't possibly look healthy and still have a feeding problem?

Or what does someone mean when they say "well she can't be that bad because she doesn't have a g-tube." This last comment is particularly troubling to me. I have chosen not to have a g-tube for Eliza, with the blessing of all of Eliza's doctors. The consensus is that Eliza would not do well with a g-tube for a variety of reasons and one should be avoided unless certain events occur or I am no longer able to continue to feed her as I do, with sleep feeds, multiple small meals a day, etc. Having a child with a feeding disorder who doesn't have a g-tube is hard. Having a child with a feeding disorder and who does have a g-tube is also hard. The common ground is that having a child with a feeding disorder is hard and that should be the focus of the discussion.

On a happier note, our bag is packed (filled mostly with empty YoBaby containers into which I will put the Dannon vanilla yogurt in an attempt to scam Eliza), my 85 year old mother's 85 pound bag is packed (since she passed her stress test with flying colors and tested as well as a 60 year old, she is getting cocky about how much she can lug with her) and UPS has delivered 96 juice boxes of Resource JFK 1.5 kcal formula and 24 containers of Benecalorie to Saba. Now all we have to do is survive 4 hours on a plane with Eliza Grace before we hop on our 12 minute flight home to Saba. The weather is sunny and 85 and the water is balmy, so no worries there.

15 comments:

Emily said...

I hope you guys have a fabulous trip!

I don't remember you mentioning an endo before, what's this new specialist for?

Anonymous said...

Have a great vacation! Saba doesn't sound like a WiFi everywhere kind of place, but will you have Internet access there?

Anne, Eliza Grace's mom said...

Emily,

I thought you and I had "spoken" about the endo? Eliza has been seeing Dr. V since last summer after several months of not gaining anything in stature. Eliza follows with her regularly since while it is obvious Eliza is making some growth hormone herself there is something off kilter about her growth and the not eating thing certainly doesn't help one to grow. Since Eliza's caloric intake now is so low it essentialy makes it near impossible for her to grow in stature, whether or not there is a hormone problem. I somwhow doubt Eliza will reach my 5'10" or, heaven forbid, her father's 6'5."

Anne, Eliza Grace's mom said...

Anonymous,

Saba has made it to DSL service but as far as I can tell it is still winning the award for the slowest DSL service!

Emily said...

I vaguely remember this "conversation" now that you mention it. Have they done any testing yet to check her hormone levels IGF-1 level or IGFBP3 level? I'm sure you know this but you can't actually test GH level because it's only secreted in the middle of the night so any test during the day time is inaccurate. How has her growth been recently? She seems so tall to me but everyone is tall to me compared to Dakota and I forget that kids can be 3in taller and still not on the growth chart for a 2yr old. Haha.

Proud preemie mom said...

I LOVE the comment "Well he/she LOOKS healthy" - that might be among my favorite stupid things to hear. I get "Well he's just so active, no wonder he doesn't gain weight." No, he only eats 500 calories a day, that's why he doesn't gain weight. Unless you're a supermodel, that's not normal. So that's it! Eliza's going to be a supermodel! She certainly has the looks.

You guys deserve an amazing vacation full of no chicken pox carrying kids, sunny weather, balmy breezes, and fruity drinks with umbrellas. Have a very safe trip and a very nice time! Give Eliza a big bday kiss from Luke on the 15th!

Liz

Sarah Furlough said...

So sorry about the weight loss. I know you must be beyond frustrated!

I hope the trip to Saba is fabulous- I'm jealous! Get some sun for me.

I'll cross my fingers that you can scam Eliza Grace with the Dannon vanilla yogurt!

Anne, Eliza Grace's mom said...

Since the testing requires an overnight stay in the hospital and it is clear that Eliza is making some growth hormone we decided putting her in the hospital for an overnight stay during the RSV season was not worth it, which is why we are waiting until the spring to do the overnight test. Eliza's stature did not increase this month, but with a weight loss this month it is not surprising. According to Dr. V two years of age is a good age to start addressing idiopathic short stature. She also thinks that given my family's and Eliza's father's family's genetic predisposition to be very tall, Eliza's stature is a concern. At
5'10" I am the shortest woman in my family ... well that was until my mother started shrinking when she turned about 80.

Emily said...

The way our endo handled it was to do an initial IGF-1 and IGFBP3 level which can be done at any time during the day and can be an indication of GH deficiency. Then since Dakota's levels were so extremely low (non-existant) we went forward with the overnight. I know all endos handle it differently and from what I've learned there's a lot of debate as to what you should do when, in terms of the steps to take.

I can see why her short stature would be concerning given your family history for sure.

It's been really intriguing reading about growth deficiencies and learning that 30% of the children with "ideopathic short stature" can actually be attributed to IGF deficiency which is what Dakota's classified as having (we're tossing around IGF Deficiency and GH insensitivity, whichever will get us approval from insurance). Please let us know how the appointment goes. I'm always anxious to meet other people going through this process.

Anne, Eliza Grace's mom said...

Sarah,

I have some concern about the TSA agent if he opens my mother's suitcase: 4 pairs of Nikes (you can never have enough sneakers when you're 85), 24 empty Yobaby containers and a breast prosthesis (a girl always travels with a spare boob).

Anne, Eliza Grace's mom said...

Eliza's blood work showed a deficiency but not to an extreme where it merited putting her in overnight during the winter. We'll review things at the two year mark and try to determine the best course for Eliza. Her continued low caloric intake and FTT are clearly affecting her growth. Dr. V has indicated that, even in children who are producing some growth hormone, after two years of age they're low caloric intake will more dramatically affect their growth thereby warranting at least a discussion of the use of growth hormones.

abby said...

I'm jealous of the balmy weather and the stomach bush, of course. Interesting about the height thing: we picked our donor on the basis of height since I am very short and Sharon is just average (I'm 5'2" on a good day--having a mom smoke through at least part of the pregnancy didn't help offset the Russian Jewish peasant stock's already strong predisposition to being short, and being malnourished didn't help them much, either; Sharon is 5'4"). So we chose a 6'5" donor, and so far Hallie's doing pretty well in that department, though her 500 calorie days last month didn't do much for her height, either. I wish that there was some way of cramming more calories into the stuff Eliza is willing to eat. We found that Karo syrup works well, but Eliza has pretty discerning taste so I am not sure she'd put up with it. Anyway, I hope the old yogurt switcheroo works; if not, we'll express mail you some from Philly. And I love your idea of the stroller sign; maybe you can make up t-shirts in a rainbow of colors with the same message for Eliza to wear. I'm sure that they'd be a big seller in our ever-burgeoning community, too.

And meanwhile, the supermodel-in-training can show off her new tan in a bikini on the beach and make all of her micropreemie pals and their moms jealous of her Caribbean exploits.

Anne, Eliza Grace's mom said...

Abby,

I think you have hit on a great marketing idea ... the "foods of week" shirts, not unlike the days of the week panties. We could have "Messy Banana Yogurt Monday," "Tempting Vanilla Yogurt Tuesday," "Wowy Berry Yogurt Wednesday" ... well you get the idea.

CG said...

First, have a great vacation!! I think people probably say "she looks healthy" because they don't know what else to say. Kind of like when i mention Landon isn't sitting yet and people are like that will come in tme. He is 2.
Landon is 20lbs at 20 months adjusted and he eats decently.

The Walsh's said...

Anne, you've been tagged!!