Christmas

It is hard to believe that this is Eliza Grace's second Christmas. It really seems as if it was only a short time ago that I was walking back and forth to the NCCU more times a day than I can count and holding my breath each time that all was well or at least stable.

Eliza thoroughly enjoyed Christmas, well at least the paper and the boxes, as would any self-respecting toddler.





During the holidays, Eliza Grace continued to display her fashion sense. First she tried on her cousin Katie's well used Uggs (and, yes, she got them on by herself!):



She tried on her new purse from Aunt Bonnie as a stylish chapeau:



And decided that her (fairly ugly) fleece blanket could be used as a wrap:



We also spent part of the day with my Dad in the nursing home. Eliza Grace calls him Papa, instead of Grandpa like all the other grandkids do. His memory deteriorates by the day but he still remembers Eliza, my Mom and me. I suspect though that the thinks Eliza Grace is his and my Mom's baby. This was our first Christmas without him home so the holiday was a little bittersweet and subdued for us. It is also probably the last Christmas that he'll remember any of us.

Sleepless in NYC

This photo could have easily been taken at 12 noon or 12 midnight, because someone has decided that sleep is only for the weak. For three days/nights running now Eliza has decided that there is no need to nap and that going to bed at midnight is a dandy idea. Personally being a night owl I can understand the attraction of staying up to watch Letterman, but if someone told me I could nap twice a day and not get busted for it, I would be under that duvet cover in a heart beat! And waking this kid up for her therapy at 9 a.m. has really been de-light-ful.

Eliza is clearly tired, she actually fell asleep standing up next to the sofa with her head on the cushion (this is normally a feat only achieved by intoxicated college students). As I type this she is in her crib chatting incessantly to herself and her stuffed frog.

She is oddly attracted to Froggie (as can be seen below)and we go no where without Froggie. Is she keeping herself awake in the hope that Froggie finally talks back to her and she doesn't want to miss that? Maybe she is waiting for him to turn into the proverbial Prince Charming (based on the thousands of kisses Froggie has gotten to date with no prince showing up, this is an unlikely occurrence). Who knows what she is thinking but one thing I do know is I'm tired just watching this whole thing!

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.

It's Pizza Time in the City

So after a disastrous week last week of no eating, two pediatrician visits and a visit to the GI, what does Eliza do yesterday? Eats pizza. Actually chewed and swallowed the pizza. five or so good size bites. It took a while, especially the last wonking piece she bit off, but she did it! She had quite the determined face while slowly chewing but eventually with only a little bit of eye watering, swallowed the pizza. There is no rhyme or reason to this feeding problem.



At the GI visit last week Eliza had actually gained some weight in the three days since she had been at the pediatrician and had lost weight. Even allowing for the 6 ounce discrepancy between the pediatrician's scale and the GI's scale she had gained weight and was either 18lbs 2ozs or 18 lbs 8 ozs, depending on whether or not you deduct the 6 ounces. I was pretty relieved and the GI said since she looks and acts healthy, is gaining some weight that he would not "poke a hole in her belly" just yet. So we go back in January and see how she is doing then.

My mother's theory is that now that she has five molars (not sure where that fifth one came from) that she will start figuring out how to chew. Could be that Nannie is on to something here. We are skipping that whole lumpy puree stage 3 foods and sticking with the smooth purees and continue trying crunchy foods and table foods and hope for no choking and gagging.

In case you are wondering where the pizza eating is in these photos, you can stop looking. There is no documentation of the event, these are just some random photos of Eliza.

Is This the Stigmata....?

No it's not! But it sure looks like it doesn't it? It's just a sign of how Christmas can be a hazardous holiday, especially if Mommy here decides to hang a really attractive stocking using a nice 3 pound stocking hanger just where Little Miss I Can Stand On My Tippy Toes can reach it and pull it on her head.

After much screaming and blood shed it was decided the Santa stocking hanger had just clipped her forehead and took out a nice triangle shaped piece of skin. Of course this has now lead Eliza to shake her finger at the Santa stocking hanger saying "no, no, no." So the poor kid may now hate Santa before she even realizes who he is! But as you can see she is no worse for the wear.

Well Baby Visit ... What's That?

Today Eliza and I trekked down to Dr. G's office for yet another unscheduled visit. She had been doing really well for the past two weeks, eating close 1000 to 1200 calories a day, minimal vomiting, not struggling to eat and actually was going to the fridge and asking for her "gogo" (yogurt). Life was looking up and I was thinking if this could keep up then maybe, just maybe, Eliza could avoid a g-tube.

Then the sun began to set on Sunday night and Eliza started to hit the skids once a gain. BY 1 a.m. her breathing was labored, she was wheezing and coughing. By 2 a.m. the hourly vomiting began, not unusual given the amount of congestion she had. Her breathing was so labored it reminded me of her chest heaving in and out when she was on the vent. For some reason I can't explain, each and every hour Eliza would awake screaming, absolute blood curdling screams. Monday things improved ever so slightly and Eliza was drinking an ounce of fluid about every two hours. I had started her on her usual routine of meds and things weren't too bad, then of course darkness set in and things got ugly again. By Tuesday morning she had vomited up the few ounces of fluids she had taken in, had fought me putting the nebulizer on her (I have the scratches to show for it) and was looking pretty punky. Her diaper looked like she may have had some blood in her urine so I thought maybe she had a urinary tract infection. So with less than two hours sleep for two nights in a row, off to Dr. G we went.

After a quick once over, it turns out Eliza has bronchiolitis once again. The pinkish tinge to her urine is not blood, but crystals which form from dehydration. She is back on oral steroids since the nebulizer is not an option because her sensory issues cause her to become apoplectic when even the nebulizer mist is near her (forget trying to put a mask on her).

The really bad news from the visit is that she has lost weight. She is back down to the 17 lbs 6 ozs. which is the weight she was back in September. While admittedly she ate nothing Monday, she had been doing well for the past two weeks. So her appointment with the GI has been moved up to this Friday to talk more about placing a g-tube. Some Christmas present for the poor baby.

So this brings me to my question: what the hell is a well baby visit? And more importantly will Eliza and I ever have the luxury of attending one?

As I sat waiting to be called I saw this parade of parents and smiling infants who had all been in for their "well baby" visits. When they were scheduling their next appointment, they were given dates 3 months, 6 months and even 9 months out. Now of course I know what a "well baby" visit is. But I started to do the math on how many doctor visits Eliza has had since leaving the NCCU. Not counting the ER or an overnight hospital stay, she has seen her pediatrician 36 times in the 17 months since she got out of the NCCU, she has seen various specialists 12 times. Now it could be more, but this was just based upon my memory and calendar as I sat waiting for the doctor. 48 visits in 17 months, that's an average of almost 3 visits a month. This does not count the endless phone calls to the pediatrician (who is a saint), the times he has let me bring her to Lenox Hill for a "quickie" exam when she has been sick on the weekends.

What struck me as odd about these people scheduling the next "well baby" visit for 3, 6, 9 months hence was that they seemed annoyed that they had to come back so soon. I really just wanted to scream "get over it! do you have any remote idea how lucky your baby is not to have to come to this bloody office every freaking week?" I have been told that I need to be more sensitive to these parents, that their baby getting a vaccination is an upsetting and painful experience for the parent. But you know what, I chose not to be politically correct and will happily announce that I have no sympathy for a mother who is driven to tears because she had to watch her baby get a vaccination. Nope sorry, they need a reality check and to get over themselves and learn to be thankful that all their child needs is a vaccination. I was admittedly lacking in empathy for the parents whose kids spent a few days in the NCCU but who acted like the world had come to and end, so I guess my current lack of empathy comes as no surprise.

Who needs PT!

If climbing abilities are any indication that Eliza's physical therapy has paid off, then she is a physical therapy star. A year of physical therapy has been well worth the investment of time and effort. I figure at the rate Eliza is growing (or not) that I'll focus her athletic endeavors on qualifying for the 2024 U.S. Gymnastics Team.



We had our first dusting of snow today and Eliza got all bundled up in her pea green fleece suit to play in the snow. Unfortunately she missed most of the fun because she fell asleep in her stroller before we even left the apartment building. The winter is young though and I'm sure they'll be plenty more snow.



Another new development is "go go." Eliza now says "go go" for yogurt and even goes to the fridge to pick out which yogurt she wants. This is a far cry from the baby who struggled just to sit in her high chair a few weeks ago. She has been eating about three, sometimes four yogurts a day since Thanksgiving. Maybe since she hasn't had feeding therapy for a couple of weeks now she is more relaxed about eating, who knows, who cares!

We met with one of Eliza's new feeding therapists this past week and I think things went well. Of course the first few sessions are usually the easiest, but I am hopeful things will continue to improve. Eliza has even been "snacking" a bit on cheese puffs and pretzels.

I never envisioned my child snacking on junk food nor did I ever think the only way I would be able to get my daughter to eat would be to distract her and bribe her with a DVD, but then again I never envisioned having a 26 week micropreemie. I guess the one lesson all of this has taught me is that whatever plan you have in life, you better not have too much invested in it since it can all change in a heartbeat, literally.