A Meal

I think after 3 years and 7 months, Eliza may have had her first meal tonight.

OK, so maybe "meal" is a bit of an exaggeration. Perhaps a "nosh" is more accurate. Alright, let's be honest here, in most cultures the combination of this:



and this:



is a snack.

But to the parents of the non-eaters of the world, a thin "schmear" of peanut butter on a Ritz cracker is in fact a meal. It clearly has a carbohydrate and some protein. And since peanuts are a subgroup of legumes and legumes are a subgroup of vegetables, then I think it is safe to say Eliza ate a vegetable tonight. Yes, the logic is a bit stretched, not unlike Reagan's effort to categorize ketchup as a vegetable (since some tomato had made some contribution to the ketchup).

Eliza has in the past scraped the peanut butter off of the Ritz and then licked the peanut butter off of her finger. But tonight, she at the Ritz with the peanut butter on it. The combination of these two things going in Eliza's mouth at the same time is what I think makes this Eliza's first meal.

Time to break out her baby milestone book and add a page.

P.S. please do not leave comments about the questionable nutritional value of a Ritz cracker. They will not be well received. :)

The Best Milestone

Today Eliza said "I wub you Mama" for the first time. Eliza may not be able to say her name or any other three word sentences, but I really don't care since she can say the most important sentence of all.

Holy Roly Poly!

Today we had a marathon of doctor appointments. I know it seems nuts to schedule three appointments in one day but I figure if I spread them out I would no longer be employed since one can only take so much time off from work.

The morning started out with a bang, literally. As Eliza was showing off her stuff to the NICU follow-up folks she got a little over enthusiastic in her stair climbing and flew headlong into the door jamb. It is comforting when these things happen in the presence of a medical professional since you can get an instant examination without having to pay extra. Eliza was pronounced "fine" and only looks like she went ten rounds with Mike Tyson (and unlike Evander Holyfield, she still has both of her ears).

At the follow up clinic Eliza stacked her blocks (a nice tower of ten blocks), put puzzle pieces in place in record time (and no baby puzzles I might add), made about two dozen animal sounds on cue and recited the names of her favorite 20 animals including "ot-a-poos." Eliza has a very respectable number of words but some are not easily understood and she does not put two words together so I'll keep working on that. She has now started to do this weird thing where she sort of twists her mouth when she talks. It almost looks like someone with Bell's Palsy (which she does NOT have). Very likely this is just a two year old -I'm-exploring-the-things-I-can-do sort of thing, but I'll keep an eye on it.

We discussed Eliza's feeding and sensory issues at length and it was universally agreed that any type of therapy that involves even modified force feeding would not be a good idea for Eliza. We also talked about some alternative medicine options which would fall into the category of "can't hurt might help" (kind of like how most Catholics like myself view confession). So I'll be exploring those and will post on those alternative treatments later on.

After finishing at Lenox Hill we stopped home for "lunch" which happily included Eliza feeding herself half of a yogurt. Then we took a car service to the pediatrician. I was de-lighted to find the usually crowded waiting room almost empty. I was not de-lighted when the receptionist sheepishly looked at me and said "oh you're the one I forgot to call to cancel today's appointment because of Dr. G's emergency." Arrrrghh. So another cab ride later we were back home uptown. For those of you familiar with Manhattan, this little round trip from the Upper Eastside to the West Village and back takes over an hour in mid-day and runs about $40.

After an afternoon snooze Eliza and I headed to the GI for her check up. When we last saw him about two months ago Eliza was a smidgen under 31 inches and weighed in at 20 lbs 9 ounces. Today she weighed in at ...(drum roll please) 22 pounds and 7 ounces (10.2999 kgs). Woohoo almost two pounds in two months! An unheard of feat. Being delirious over this news the nurse then measured Eliza ....(another drum roll please) and she was 33 inches (84 cm)! The nurse re-measured and re-weighed her a couple of times (much to Eliza's dismay) but no it is true, my girl gained 2 pounds and 2 inches in 2 months! Proof that the magic brew of 16 ounces of 65 calorie formula can work like a charm and everything wles that goes in her mouth is the proverbial "gravy." We are going to once again try to wean Eliza from her prevacid dose. Considering the torture it is to get it in her these days I am very much hoping that this time the weaning works.

So I shall leave you with some photos of the little pork-ette:

Showing off her excellent cup drinking skills:



Helping Nana garden:



Hopefully the first musical prodigy to ever grace the family tree:

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.

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.

What Did Eliza Miss By Not Having a Third Trimester?

In a few recent discussions with other parents of preemies, the subject of what our babies missed by not having a third trimester, or even part of the second trimester, has come up. It makes for interesting reading.

Here are just a few highlights of the things our babies missed out on which I have gathered from a couple of different websites:

Week 26: Eyes remain closed. Although your baby's eyes are fully developed, they may not open for another two weeks.

Week 27: Second trimester ends. Your baby's lungs, liver and immune system are continuing to mature.

Week 28: Baby's eyes open. Your baby's eyes are beginning to open and close. The color has been established. Your baby is now sleeping for about 20 to 30 minutes at a time.

Week 29: Movement is more forceful. Your baby's bones are fully developed, but they're still soft and pliable. This week, your baby begins storing iron, calcium and phosphorus.

Week 30: Baby packs on pounds. Your baby weighs about 3 pounds and will gain about 1/2 pound a week until week 37. Your baby may practice breathing by moving his or her diaphragm in a repeating rhythm.

Week 31: Reproductive development continues. Your baby's lungs are more developed, but they're not fully mature. If your baby is born this week, he or she will probably need a ventilator to assist breathing. Complications such as bleeding in the brain are less likely than they were even a few weeks ago.

Week 32: Downy hair falls off. The layer of soft, downy hair that has covered your baby's skin for the past few months — known as lanugo — starts to fall off this week.

Week 33: Baby detects light. Your baby's pupils now constrict, dilate and detect light.

Week 34: Protective coating gets thicker. The pasty white coating that protects your baby's skin — called vernix — gets thicker this week.

Week 35: Rapid growth continues. Your baby continues to pack on the pounds and store fat all over his or her body.

Week 36: Baby can suck. Recent fat deposits have rounded out your baby's face, and your baby's powerful sucking muscles are ready for action. To prepare for birth, your baby may descend into the head-down position.

Week 37: Baby is full-term. As fat continues to accumulate, your baby's body will slowly become rounder.

Week 38: Organ function continues to improve. His or her brain and nervous system are working better every day. This developmental process will continue through childhood and adolescence.

Week 39: Placenta provides antibodies. Your baby has enough fat under the skin to maintain body temperature as long as there's a little help from you. The placenta continues to supply your baby with antibodies that will help fight infection the first six months after birth.

Not only did our children miss out on these crucial steps in development but their underdeveloped eyes were assaulted by too much light, their ears (which had no cartilage and were mere flaps of skin) were subjected to too much sound, their skin had no protective coating but instead was subjected to the pressure of the isolette, the touch of the sheets, blankets and tiny diapers, their imnmune systems which were so far from being formed were subjected to a thousand germs, despite everyone's best efforts to protect them, their nervous system was forced to endure the pain of PICC lines, umbilical lines, endotracheal tubes and feeding tubes and their bodies subjected to dozens of medications, all of which you as their mother were told to avoid during pregnancy.

I think that the next time someone suggests that preemies just need to put a little meat on their bones and get a little bigger, I'll just hand them this list rather than try to explain the effects of prematurity.

A New Milestone ... 20 pounds!

Yesterday Eliza had a morning check up with her GI and an afternoon visit with her pediatrician. I think it is safe to say she was officially 20 pounds! At the GI she weighed 19 pounds 15.5 ounces (could they not have rounded up?) and at the pediatrician three hours later she weighed 20 pounds 2 ounces. I have decided to split the difference and call it 20 pounds. Also it's good to know their scales are pretty close. The GI was really please with Eliza's progress in the past month. Never in her life has she gained a pound in a month (a half pound used to thrill me) and I think we were both shocked to see that she had gained a bit over a pound and a half this past month.

It was also kind of nice to hear the GI say I was doing a good job. The past few weeks I have run across an inordinate number of people who have told me I should "get over it" or, my personal favorite, that I have a "chip on my shoulder" because Eliza was a micropreemie. Is it something in the air these days? I know a few other moms in the micropreemie boat who have had to tolerate such ridiculous comments by people who have no earthly idea what it is like to spend months on end in the NCCU while your child struggles just to survive or to raise a baby who requires substantially more care than the average infant or toddler.

When I embarked on this adventure of single motherhood, I somehow thought that other women who had chosen to be single mothers would be more supportive than my married friends and acquaintances. Interestingly this has not been the case. There is a handful of single moms I have met who are just wonderful. The larger group however has really acted as if extreme prematurity is somehow "catching" or that it should never be the topic of conversation since it not "relevant" to their discussions. I find this attitude quite interesting since the majority of the single women who have told me that I should "get over this" are well into their forties and planning their first or second babies. Given that demographic they are at a fairly high risk to end up in the preemie boat, which would be pretty ironic. So I have decided that I, and the little "chip" on my shoulder known as Eliza will pal around with our friends, mostly married and some single, who bring compassion, empathy and a bit of humor to the table and leave the judgmental, narrow minded and mean spirited folks to wallow in their own muck.

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.

Yikers! 21 Months Today

Can you believe Little Miss Eliza Grace is 21 months old? Well she is and she sure is acting like a toddler. There are few surfaces safe from her climbing and the stroller might as well be put into storage since she hates going in it now that she is walking. She pretty much can walk a half mile in Central Park without looking to be picked up or to get into her stroller. Hey, if the rest of America did that we'd be a slim-looking nation. Her running skills are improving, however she occasionally still wobbles a bit at full speed.



She is also too nosey for her own good. Under the bridge in the park there is a dog run that caught Eliza Grace's attention. Although she has yet to say the word "dog," every time she sees a dog she lets out a very high pitched "arf" ... not unlike the sound a Yorkie would make. I would point out we are a "big" dog family so hopefully this imitation of a lapdog isn't a sign of some future preference.




Eliza Grace's cousin Peter, who is quite the photographer, did a test run of some photos of Eliza Grace in her Christmas dress. The test run does not bode well for those perfectly posed studio shots. Couldn't get tights or shoes on her or get her to sit still to get her hair brushed. But I think I prefer the less than perfectly posed photos, messy curls and all.

And what would be a post without a comment on her eating....in the last few days Eliza has tried: more pizza, eggs and cheese and is up to about 4 yogurts a day plus 12 to 16 ounces of formula.

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.

Milestones

There are the usual milestones that parents count in the first few months of a child's life, when they smiled, picked their head up, rolled over, slept through the night, to name a few.

The milestones for preemies and micropreemies are a bit different. Milestones may be the wrong word to describe some of these events since some of these "milestones" are monumental and others are things that other parents just take for granted, like the day they first held their baby. For some of us, that day comes long after the day the baby is born.

Since this is a bit of a "catch-up" blog, Eliza's milestones that everyone may has missed are:

April 10, 2006, first held by me, 25 days after she was born;

April 19, 2006, reached the goal weight of 1000 grams;

May 13, 2006, reached 3 pounds;

May 14, 2006, was finally weaned off the ventilator to BiPAP;

May 21, 2006, weaned off of CPAP;

May 24, 2006, drank from her first bottle;

June 23, 2006, came home from the hospital;

August 30, 2006, weaned from oxygen.

Eliza's other, more usual milestones came much later. She rolled over for the first time on January 9, 2007; crawled for the first time on March 14, 2007, the day before her birthday; stood up for the first time on April 5, 2007 and first walked on August 17, 2007, just after she turned 17 months.

Photo: Eliza Grace at 11 Months Old