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.

Yup, She Really Can Smile

Finally, proof that Eliza Grace can and does smile for the camera, instead of her usual "Posh Spice" face:

Excuse Me, I'm On the Phone Here

Eliza loves her phone(s) ... Note the large collection of phones she keeps in her purse (yes, she does carry a purse). Also note, she prefers the real phone over some phoney baloney Fisher Price cell phone:



She does not like being disturbed while chatting away:



And thanks to her wonderful OT, Kim who has been with us almost since Eliza came home in the summer of 2006, Eliza shows excellent dexterity in closing her flip phone:



On a fashion note, my enthusiasm for Eliza's recent growth caused me to dare to invest in 18 month size pants. The fit? Well, "not so good." But given that there are about 2 inches of fabric under her feet, I can save a ton of money on socks:

The Latest Stats

Today we visited Dr. Flavio for Eliza's monthly RSV shots and weigh in. Once again she did not disappoint! Eliza is now officially almost 21 pounds. Technically she is 20 pounds 15 ounces (9.5kg). A nice gain of 13 ounces since our visit in January. She was not cooperative for her length measurement, but it appears she is now 30.5 inches, up about 2 inches from September of last year. For once in her life she is at some percentile other than the third. If her length is correct, she is in the 12th percentile for length. Her head circumfrance, for those of you looking for the full story, was 45 cm which puts her in the fifth percentile for HC. Alas, while the weight gain of 13 ounces is impressive, Eliza remains below the third percentile for her weight.

And the most important stat of all ... Eliza has now slept through the night 21 times since she was discharged from the NCCU! Whoohoo! And yes, I have kept count. It is so easy to keep track of something that happens so infrequently! :)

Three of the magic 21 nights have been in the past few weeks, since I started giving Eliza Omega 3-6-9 oil. We have to thank Hallie's mom Abby and her great research skills for finding out about this stuff for us! I've always been a skeptic of supplements but, given the state of affairs, I was game to try something so long as there was no real downside to it. Well since taking the Omega 3-6-9, Eliza has had fewer behavioral outbursts (which are often of mammoth proportions), she has been saying far more words than she had been for months, and has been sleeping better. Even though she has only slept through the night three times since starting with the Omega oil, getting her to bed has been less of a battle and she has actually been napping with some regularity. Some may say this is all coincidence, but I don't think so. Either way, I am very happy with her progress in her verbal skills, sleeping and behavior.

Where Did Eliza Go?

I have just realized that the past few posts have been devoid of any photos of Miss Eliza! Bad Mommy-blogger. So for those of you have been wondering where in the world Miss Eliza is ... here are a couple of videos of Eliza's climbing skills and some recent photos:

Sporting her lovely Chilean sweater from Aunt Mal:



Making friends with her Curious George from Uncles Scott and David:



And last but not least, a few photos of her first haircut, being held by her Nana as Miss Lena snips away:

Some Vindication

As many of you know, either from me or by your own NICU experience, pumping is not an easy task when your baby is in dire straits in the NICU, often surviving via mechanical ventilation and with each day being an uncertainty. I have often wondered why so many of us NICU moms, despite enough determination to move a mountain, could never produce enough breast milk to feed a mouse, let alone a baby. There is now some well founded scientific research supporting what we mothers have known all along, that something just wasn't right in the NICU pump room. So maybe before some folks out there accuse us preemie moms of having chips on our shoulders because we couldn't breast feed, they will think twice before being so judgmental after they read this article.

Effect of preterm birth and antenatal corticosteroid treatment on lactogenesis
II in women. Henderson JJ, Hartmann PE, Newnham JP, Simmer K. School of Women's and Infants' Health, University of Western Australia, Crawley, Western Australia, Australia.

OBJECTIVE: The onset of copious milk secretion after birth is known as lactogenesis II. The objective of this study was to investigate the effect of preterm birth and antenatal corticosteroids on the timing of lactogenesis II after birth. METHODS: Women who had received antenatal betamethasone treatment and were expressing for a preterm infant whose gestational age was <34 weeks (N= 50) were included. On days 1 to 10 postpartum, participants measured the volume of milk expressed in 24-hour periods and collected milk samples. Lactose and citrate levels were analyzed in the milk. RESULTS: The gestational age at delivery was 31 weeks (range: 24.2-33.7). Milk volume was recorded by 46 women on 320 expression days and was positively associated with gestational age. Gestational age modified the effect of interval between betamethasone administration and delivery on milk volume. At gestational age 28 to 34weeks, women who delivered 0 to 2 days after betamethasone treatment obtained significantly greater volumes than women who delivered 3 to 9 days after treatment. Milk samples (N = 324) were collected by 42 mothers. Mean +/- SD lactose and citrate levels were 156.800 +/- 36.217 and 3.458 +/- 1.442 mM, respectively. There was a significant positive effect of gestational age on milk lactose levels but not citrate levels. Betamethasone treatment did not alter lactose or citrate levels in milk. CONCLUSIONS: Delivery at extremely preterm gestational ages caused a significant delay in the onset of lactogenesis II. The volume of milk was reduced further when antenatal corticosteroids were administered between 28 and 34 weeks' gestation and delivery occurred 3 to 9 days later. In view of the advantages of mothers' own milk, additional support with lactation is recommended for mothers of preterm infants, particularly those who have been treated with corticosteroids before the delivery.

PMID: 18166549 [PubMed - in process]

Thank you Sheila for uncovering the article.