The Cold Wars

Perhaps Eliza's latest ailment was caused by drinking too much bath water? Hmmmmm. Unlikely.


Since Thursday night Eliza has been wheezing, gasping for breath and miserable. She has also been vomiting at night almost hourly. Never a good thing unless you own the Scott towel company. So after a visit to the pediatrician it appears she has a touch of pneumonia, probably from aspirating some vomit. Nice. It's been a fun few days here fighting with the nebulizer and trying to get a bunch of syrupy meds into Eliza and sleeping in stretches of one to two hours at a time.

The visit also revealed that despite a month of new formula with a higher caloric value and adding some nasty stuff called Benecalorie to her yogurt Eliza has gained only 3 ounces. Makes you wonder what she would have lost on her normal diet. The pediatrician seems to think that Eliza may have delayed gastric emptying. The nutritionist from the feeding clinic also mentioned the same thing. This might explain why she has never been able to consume more than four ounces of anything at any one time. So when we visit the GI on Friday, I'll see what he thinks about this theory. It makes sense though. Also since she has been on her "souped up" diet she has pretty much vomited every night at 10 p.m., which may be a result of the higher osmolarity of the new formula. The past few days though she has no "solids" a/k/a yogurt and only about 16 ounces of formula has stayed in on any given day. Can't wait to see what she weighs next Friday.

So hope springs eternal for some new and improved answer to Eliza's inability to eat.

Another Milestone

The important milestones in Eliza's life don't always relate to her developmental achievements. Sometimes they are milestones that she shares with the people most important to her.


On October 19, 2007 Eliza's Nannie, my Mom, celebrated her 85th birthday. To my knowledge there are only about 3 known pictures of my mother facing a camera and once again I was unable to capture one this weekend. I think though she enjoys looking at Eliza more than looking at a camera, which is fine by me. This has been a hard year for my Mom since my Dad had to be put in a nursing home. I can't imagine dealing with that kind of change after 57 years of marriage.


My Mom is a "tough cookie" as they say. She was born on a 5 square mile island in the West Indies, with a population of about 1000, most of whom seem to be some sort of cousin. She came to America in her late twenties and married a nice boy from Brooklyn. When she left Saba in 1948, she had never seen a television or even have the benefit of electricity or running water, so landing in NYC was quite the shocker. Now that my Dad is in a nursing home she visits him twice a day and walks the mile each way. Four miles of walking a day at 85 isn't anything to sneeze at.


When she found out I was going to become a rather "old" single mother at 45 she was much more supportive than I ever gave her credit for. When Eliza was in the NCCU, my Mom sat at her isolette for hours, virtually willing Eliza to live. Her devotion to Eliza is unwavering. I think sometimes she is trying to make as many memories for Eliza as she can since she knows she probably won't be here to celebrate Eliza's 20th or 30th birthday. Then again maybe she will be with us then since her parents lived to be 97 and 98 years of age.


My Mom was born to be a grandmother. She can make Eliza giggle endlessly, reads books to her until her eyes are bleary, will stay up late with her when she is fussy or not well, makes fench toast and pancakes with the firm belief that this will be the day Eliza eats and of course has crocheted quite a few blankets for her. She has even created the "Eliza Cabinet" in the kitchen. Eliza is one lucky baby to have my Mom for her Nannie.

Vacation and Vomit

Eliza and I spent the past few days off on a nice mini-vacation with my old roommate visiting our college, William and Mary, and seeing some old friends. Eliza did pretty well with the change of environment, except for the mini-hunger strike she went on. Despite getting only about 600 calories a day she had boundless energy. Of course the people on the return flight wished she had no energy as we sat on the runway for an hour while Eliza screamed non-stop. Did I mention she hates being confined in a car seat, stroller, baby sling, etc?


Despite hardly eating, we had a vomit-free vacation. Of course the return home is another story. Since getting back we have had a nightly vomit-fest. It usually occurs about an hour after her nine p.m. bottle once she has been asleep. Despite Eliza's GI insisting that her reflux is under control with her current dose of Prevacid, I suspect this vomit-fest is reflux related. She does not vomit this particular formula during the day and the vomiting starts about 3 to 4 hours after her last yogurt which is supplemented by Benecalories. I am doubtful it is the Benecalories causing this since the vomiting doesn't start until several hours later. So tomorrow the GI shall be getting yet another phone call from me.


Photo: Eliza Grace September 2007, Future Somalier

The Calorie Wars

While most of America struggles to cut calories, I struggle to add calories to Eliza's diet. Thanks to some very thoughtful friends, I now have a recipe for yogurt soup and may actually learn to fry tofu. Eliza's feeding therapy and OT has resulted in some new experiences for her this week. She has decided that licking/biting (but not eating)extra crispy KFC is a good thing and she has a bit of an affection for duck sauce. Not much in the way of "good" calories but I'll take it. One theory is that this interest in KFC and duck sauce is evidence of the addictive qualities of MSG.


After much anticipation, Eliza's new formula has arrived along with a calorie supplement which is an oily/creamy liquid that packs 300 calories into 1.5 ounces. Although the stuff has no taste, it has a nasty, slippery feel to it. My attempt to ingest it (not that I need the 300 calories) resulted in a gag-fest, but guess who seems to think it's just great?! So in one fell swoop Eliza has gone from taking in 650 to 800 calories a day to 1000 to 1200 just by adding this muck to her formula and her yogurt. Now that I know she is getting the calories maybe we can work a bit more on getting her to actually eat some food.


Eliza seems quite interested in watching everyone else eat, particularly other kids. I can't quite figure out her expression, but it is part curiosity and part shock that anyone would willingly put mashed bananas in their mouth. I cannot imagine what is going on in her little head, but she is definitely trying to puzzle through this.


In addition to speech-feeding therapy, occupational therapy, physical therapy and a sensory gym, the suggestion has been made to try cranial sacral-therapy. As best as I can decipher this therapy involves the movement of the cerebrospinal fluid and that somehow getting this to flow right will result in improved feeding. A few months back I was a serious Doubting Thomas on the Wilbarger Brushing and Joint Compression Protocol, until of course it seemed to work to at least get Eliza to tolerate yogurt, but I have to admit that the cranial- sacral therapy may be a stretch for me (unless of course it works).


On a positive note, this week Eliza has learned to climb onto the couch. Her planning skills are impressive since in order to get up on the couch she must first get a pile of books, put them next to the coffee table, and then go from the coffee table to the couch. Now if she could only remember how to turn and slide off the couch we'd be home free! Until she masters that skill I'll keep the plastic surgeon on speed dial.


Photo: Eliza Grace in Central Park September 2007

Life Comes Full Circle

As some of you know, my Dad has pretty advanced Alzheimer's. Although his symptoms have been lingering for a few years now, he was "OK" until this past March when he took a bad fall which in hindsight was more like falling off a cliff for him. Although he stopped driving a few years ago, he and my Mom still traveled and were out of the country when I was hospitalized. They came back right away and stayed by my side until Eliza was born a few weeks later. While Eliza was in the NCCU, my parents took the bus to visit her about three times a week. Dad didn't say too much about Eliza's condition but was firm in his belief that she just needed to get a little bigger and she would come home.


He would hold Eliza in the NCCU and talk with her about the things she would do someday "when she was sprung from this joint." He even came up with a new use for the Baby Bjorn carrier. Since he knew my mother and I would not leave him alone with Eliza once she came home, he said he could babysit her so long as he had the Ba-Jorn, as he called it. See he figured if he wore Eliza in the Ba-Jorn he wouldn't forget where he put her. Pretty clever thinking for a guy from Brooklyn whose mind was fading.


Daddy is now in a nursing home, his condition having dramatically deteriorated in the past 6 months. There are no more bus rides into the city. Daddy doesn't remember that Eliza was ever in the hospital, which in some ways is a good thing, because there are many days I wish I could forget. But Daddy does remember Eliza, as if she has always been here, looking just the way she does today, never having been tiny, sick or dying. He always wants to know if it is Tuesday. Tuesday is the day he and my Mom used to visit Eliza once she was home from the hospital. So now, when we visit on Saturdays, Saturday becomes Tuesday.


Daddy and Eliza are on the same diet now, pureed foods and high calorie formula to keep their weight up. Strange how the end of life resembles the beginning of life so much.


Photo: Eliza Grace and her Grandpa, October 2006