Tuesday, January 1, 2008

Old Year's Night

New Year's Eve, or Old Year's Night as it is called on Saba, was spent with some good friends nearby. Eliza got to wear her new party dress and try out her new rocker, which is now her seat of choice. She was quite the party girl, playing with the older girls and stayed up until we left a little after 10 p.m. Of course Eliza decided to end 2007 the way it started, by projectile vomiting all over herself, the car seat and pretty much the entire backseat of the car on the way home.

2007 was a mixed bag for Eliza Grace. Here is brief rundown of the ups and downs of 2007:

Motor Skills: Eliza Grace has progressed wonderfully with her physical skills, both her fine and gross motor functions. She can pick pocket a wallet from a purse and turn the pages of People magazine like a pro. She can climb over the old fashioned tension gates and can balance standing on her rocker while reaching for her toys (not something I encourage).

Occupational and Sensory Issues: Eliza's sensory issues are also improving, but slowly. Sounds that previously caused her to have a meltdown no longer do. She can now tolerate touching sand, rice and grainy textures with her hands, but cannot tolerate these textures on her feet. She is still averse to having her hands "dirty" with any type of sticky or wet textures (a/k/a food) but is slowly improving.

Feeding: Eliza's feeding has not improved and considering that she is a year older, her feeding has technically worsened. At Eliza's age her primary source of nutrition should be solids. Instead, Eliza's nutrition is 70% to 80% formula and 20% to 30% yogurt (not quite a "solid"). This is virtually unchanged since early 2007. Her repertoire of foods has not increased, and in fact has decreased since she no longer will eat any purees, whether store bought baby foods or home made. Other than a brief two week period in December when she tried nibbling on some crunchy foods and pizza, she once again only eats yogurt and only drinks her formula. I am thankful that with the calorie supplement and the high calorie formula I am usually able to get about 1000 calories in her a day. If I couldn't supplement her calories this way she would be at about 600 to 700 calories a day. Her weight is monitored monthly, or more frequently when there is a weight loss so we can determine if a g-tube would be necessary. Given Eliza's behavior toward anything "unusual" (nebulizer, aerochamber, cannula, IV, hell, even her diaper sometimes) the doctor and I do not believe that she would tolerate having a g-tube at this point, and that it may be more detrimental than helpful. She is too old not to notice it and too young to understand it. Of course if her development is at risk there would be no choice and we would figure out a way to cope with it.

Weight/Length: At the beginning of 2007 Eliza weighed almost 14 pounds and closed out 2007 at 18 pounds, or a gain of about 2000 grams, for our metric friends. She gained 3 inches in length. The weight gain over the course of a year is not particularly stellar (yes, yes I am well aware she was one pound four ounces and "has come a long way", so please don't repeat that mantra to me). Her growth in stature is again slowing down, likely due to the difficulty in maintaining her caloric intake at the desired level of 1200 calories.

Speech: Eliza's speech is improving. She has an eclectic selection of words such as Mama, Nana, Papa, turtle, fish, frog, Boz (Bosley our cat), K-D (my niece Katie), da (down or done, depending upon the sign she makes), arf (dog), moo (cow), baby (the name she calls herself in the mirror), night-night, bye-bye and hi-hi. The usual single syllable words all the baby books insist a toddler should say seem to elude us.

Sleep: Eliza still maintains her record at 14 nights of continuous sleep since coming home from the NCCU. Since she cannot take in sufficient calories throughout the day, she wakes up at least once, mostly twice, at night for a bottle. "Ferberizing" does not work since (a) if she doesn't get the one or two four ounce bottles in the night she will not have made the minimum caloric intake of 1000 for the 24 hour period (b) she is hungry (or at least as hungry as Eliza ever acts) and (c) if I let her "cry it out" she generally vomits on everything.

General Health: This past year Eliza's health was fairly poor in the first six months, with projectile vomiting 8 and 9 times a day for weeks on end, pneumonia, bronchiolitis on more than one occasion and a week long hospital stay with rota virus. The second half of 2007 was a bit better. The vomiting seems to be more controlled and episodes only occur 3 to 4 times a week. She has had a couple of chest colds which required only ER visits, mostly because of the dehydration that accompanies her inability to bottle feed when she is congested. She underwent an endoscopy with biopsies like a pro, and was back to her usual self within a couple of hours after being vented for the procedure.

Which brings us to 2008.

This coming March, Eliza, my mother and I will travel to Saba for a three week vacation. Since Saba is a five square mile island with limited resources, each of our vacations there seems to require the planning of the Normandy Invasion, so I have already started to ship boxes of Eliza's formula, calorie supplement and every conceivable medication she may need while there. Eliza will celebrate her second birthday on Saba with her very, very large extended family and her ever growing list of little cousins. Maybe she will eat some birthday cake, maybe she won't, but either way I am sure she will enjoy the sun and sea as she has in the past.

I hope that 2008 will be the year that Eliza decides food is not so bad. If it isn't, they'll be some disappointment, but it won't be the end of the world.

4 comments:

  1. Good update! How tall is Eliza now? I am just curious because I have a daughter the same GA, but slightly lower birth weight, who is almost exactly one year younger. She also has feeding problems. :-(

    ReplyDelete
  2. Eliza is getting close to the 30 inch mark ... maybe at her next visit!

    ReplyDelete
  3. From time to time I visit Eliza's blog and read about her progress and in reading it tonight I've realized I have never left a single comment. Something I thought I should rectify since I stood there and witnessed her auspicious entrance into this world.
    Many ups and downs this past year with some more still surely to come and yet with all of that life is still so enriched by her birth. Even though she endures struggles she knows no different and so she goes through her day with curiousity and the joy only a child can have.
    So for this New Year I wish Eliza above all else health and a continued joy and love for life and for her Mama too!
    Happy New Year with all my hopes for an easier year to you both Anne.
    Love,
    Tracey

    ReplyDelete
  4. Thanks Tracey for the good thoughts. For those of you who don't know, my cousin Tracey is not only a wonderful NICU nurse, but she served as my "fake husband" during Eliza's birth (despite having to endure looking like a teletubby in the cheesy paper scrub suit which was designed for a 6'8" man and not a very petite woman)

    ReplyDelete

Prematurity... Should It Be a Classification for Special Needs Services?

It is hard to fathom that in a couple of days Eliza will be ten. I look back on the past decade and and am amazed, and often baffled, how sh...