36, A Number Not To Be Envied, Unless It Is Your Bra Size

For those of you wondering "wha-happen?"(to quote Eliza), well 36 happened. As has been reported, Eliza is a less than stellar sleeper who lives by the credo "sleep is for the weak" (this is apparently related to her other life philosophy that "food is for the weak"). Up until August Eliza had achieved a total of 36 nights of uninterrupted sleep. Now admittedly some of the sleepless nights in the first 18 months that she was home from the NICU were brought on by the need to sleep feed her or by her middle of the night vomit routine brought on be her reflux. But the past several months her inability to sleep has worsened and worsened and in the past month Eliza has been averaging about 6 to 8 hours of sleep in a 24 hour period (naps included).

This is not good at all since Eliza should be getting about 12 hours a day sleep. As Eliza's sleep deteriorated so did her behavior and sensory issues (and so did my ability to post to the blog.) Eliza could not focus in any of her therapies and would go from 0 to 10 and then 10 to 0 in the blink of an eye. One would think that all of this awake time would have caused an eating binge, but alas, a veritable hunger strike set in. Eliza's volume intake seemed to mirror the sleep situation, with her daily volume of formula sinking to as low as 6 to 8 ounces. This is not good at all for a near 30 month old who eats no food (no, I do not consider consuming one demitasse sized spoon of pudding in a day to be "eating food").

So drastic times have called for drastic measures. After talking things over with Eliza's pediatrician and a few other wise souls, Eliza is starting a 3 week trial of a prescription medication to help her sleep. The first night there was no discernible difference and Eliza finally fell asleep after 11 pm,waking at 4:42 am. Night two was not so fun. Eliza was none too keen on the taste of the medication getting squirt into her mouth, even after it was diluted with water, and basically all hell broke loose. I even had to call in reinforcements (thank you Bonnie). I decided to give it one more try on night three and was rewarded with a peaceful sleeping baby for ten hours, which translated to a markedly happier and more engaged toddler the next day.

Eliza is now on her fourth night of the medication (I'm not counting the first two nights) and if all goes well we will have hit the magic number 40 for full nights of sleep for the wee one. Hopefully a few weeks of a sleep aid will get Eliza into some type of normal sleep pattern. Her formula intake has improved the past few days and she is back to taking 12 to 16 ounces of formula a day. Who knew a well rested toddler was a hungry toddler, although actually it would appear that by all accounts Eliza has no sense of hunger or doesn't recognize the sensation as hunger.

On a far happier note, I have discovered that Eliza loves a good carousel. Last summer she was a bit put off by the loud music but this time was so enthralled I had to pre-pay for a few rides since she didn't want to get off.

Feeding the goats and birds was fun, but not nearly as entertaining as the carousel!

Support Groups vs. Support Hose

Honestly folks I swear that I never thought I was the kind of person who would need a support group. I really figured I would need support hose long before a support group. But then the fates decided to mess with my grand plan and not only did I need xanax and crocheting, but darn if I didn't find myself looking up ever preemei support group in the tri-state area and on the internet. Much like Goldilocks, the first few support groups I tried just didn't fit me. People were either too pie-in-the-sky or too doom-and-gloom or just downright dopey.

How did I decide which support groups to stick with? Well I found that following the criteria below really helped me decide which groups were right for me:

1. No one in the group cringed or looked away when they saw a picture of Eliza just after she was born. (Unlike quite a few family members and friends...you know who you are and no I haven't quite forgetten yet).

2. Each new member of the group is congratulated on the birth of their babies no matter how serious their condition or how early their birth. (I had people ignore the fact that Eliza had been born and one person actually sent me a sympathy card).

3. I never have to decipher things like ROP, AOP, RDS, BPD, NEC, IVH, CP, PVL, CPAP, BiPAP, etc. to the group.

4. No one in the group will ever tell me that Eliza should "catch up by 2."

5. We can have an intelligent discussion on the pharmaceutical mechanisms and side effects of most respiratory and gastro-intestinal medications, a discussion that is probably as informed as any discussion between pharmaceutical reps.

6. Everyone in the group knows what Early Intervention is and no one will ever ask if it is a 12 step program for preemies.

7. For those of us who tried and failed to breast feed we are never made to feel like pariahs for giving our babies formula.

8. No one in the group will ever tell me that Eliza is just a picky eater or suggest that giving her Cheerios will cure her feeding problems.

9. We can communally celebrate our children's victories, which would otherwise go unnoticed in the rest of the world, like rolling over for the first time well after their first birthday or learning to hold a crayon or eating one lonely french fry or not vomiting for 10 whole days.

10. Being able to sometimes laugh along with the only people who understand at the otherwise dire situations we often find ourselves in.

So for those of you who think support groups are only for overly needy members of society, just remember that a bottle of xanax and pair of support hose can only get you so far.

Ahhh the Fun of the Annual IFSP

For those folks whose main focus for their two to three year old toddlers is which pre-school to apply to and how your child will score on his or her ERB, well you probably have never heard of an IFSP and please do count yourself lucky! The Individualized Family Service Plan ("IFSP") is the plan that Early Intervention("EI") establishes for your child for the next twelve months. The annual IFSP meeting is time for paper gathering, prescription writing, updating of medical data, report writing by the team of therapists and a little begging on the part of the parent, moi.

I do try to refrain from reading the evaluations by the physical therapists (Eliza has two! one at home and one at the rehab center), occupational therapist for sensory issues, the occupational-feeding therapist, the speech therapist, the speech-feeding therapist and the nutritionist (perhaps I should call her the nutrition therapist for consistency?). So until I have enough xanax in my system to sit down and read these reports I delude myself into believing that Eliza is really acting quite close to her corrected of two.

But those scraps of paper call me to them to read them over and over and over again. So although the developmental pedi, who sees Eliza a few times a year seemed to think she was pretty spanky except for feeding, the folks who see her each day have a different tale to tell.

Now I do love that each of these evaluations is based upon some Scale/Quotient/Index or Profile, kind of like the Richter Scale for earthquakes. So here is a brief summary of how Eliza fared in the last 12 months:

Gross Motor: Eliza scored a 70 on the "Peabody 2" (an apparent improvement over the old Peabody 1 Scale). This puts her in the 2d percentile meaning, in layman's terms, that 98% of the kids in the playground can kick her ass.

Fine Motor: Eliza did not score so well on the Michigan Early Intervention Development Profile. She scored in the 16 to 19 month age range, or a 30% delay. Personally I think we would have fared better on the Saban Early Intervention Development Profile, but no one asks for my opinion.

Sensory: Apparently there is no profile named for a person or state for this one. But despite the secrecy of the author of this test, Eliza scored with a 50% delay ... translation: You average 14 month old can deal with the world way better than Little Miss can.

Speech: Now this is more complicated since there are two sets of tests. One for Language Comprehension Skills and the other for Language Expression Skills. Fortunately Mr. Rossetti designed one big scale for both, the "RITLS" or Rossetti Infant-Toddler Language Scales. On the receptive side of life Eliza scored at a 21 month old, giving her a 25% delay. The expressive side, not-so-much. Eliza only made it to the 15 month old level putting her at about a 40% delay.

Feeding: I have saved the best for last. According to the Developmental Pre-Feeding Checklist from Morris and Klein, your average 9 month old can nosh on a hamhock better than Eliza. We had quite a bit more than a 50% delay.

So overall a super day for assessments!

But Eliza is cute....at least according to the Richter Scale.

The Village Idiots (not to be confused with the Village People)

The past few weeks have been just chock-full of run ins with people who are just plain dumber than rocks. Perhaps my nerves were a bit frayed, what with the anniversary of Eliza's due date and her coming home date, both not-so-subtle reminders of my complete inability to keep Eliza safely in my uterus for 9 stinking months. Then again, maybe my recent runs really are proof that the village idiots have taken over the village.

In an effort to help Eliza "socialize" with other toddlers I have enrolled her in a few toddler classes. Now when Eliza is overwhelmed by life, in particular by certain sounds, she sort of moans repetitively. So here we are in one of these toddler classes when lo and behold some sound set off Eliza's sensory overload button and the moaning began. As I was trying to soothe her I heard this whiny-Carmella-Soprano-style voice say "Oh she's retarded isn't she?" I slowly turn my head to the metallic sound of this voice and am barely able to utter "what did you say?" Carmella (who also looked as if she had a taken a page from the Amy Whinehouse school of make up) advised that the only children she had ever heard make such a moaning sound were "retarded." Now I am no shrinking violet but I was so shocked by her commentary that I picked up Eliza, left the class and walked the half mile home crying like a blithering idiot.

It did take me several days to recover my senses and to realize I was not going to let this overdone Carmella win. So I took the photo of Eliza at 8 days old, by then weighing less than a pound, in the palm of the nurse's hand, with me to the next class. I asked for a moment of everyone's time before we began. This generated an exaggerated eye-roll from Carmella. I told the parents what had happened the week prior and why Eliza and I had left so abruptly. This was met with a resounding "who the hell said that" from everyone ... except Carmella. I told the group I was not interested in publicly humiliating the offending parent. Within a few seconds though it was pretty apparent that Carmella was the village idiot. The rest of the class was awed by the progress Eliza has made and stood in disbelief that she ever could have been so tiny. We were welcomed by the group, moaning sounds and all.

Oh and the following week ... Carmella was no where to be found. Hopefully she is back under the rock where she came from, surrounded by her cadre of village idiots and that she will never darken my door again.

Now really... who would you rather spend the afternoon with:

Due Date

Today was Eliza's due date.

Last year I had a small celebration for the anniversary of the day Eliza should have been born. This year I decided to forgo that and spend a quiet evening with just the two of us. There is such a startling contrast between what Eliza looked liked when she was born and when she should have been born.





Anyone who thinks that a baby born 14 weeks too soon is just a smaller version of a 40 weeker should look at these two photos. People want to believe that an extremely premature baby is just a miniature 40 weeker who needs to be fattened up a bit because they don't want to accept that maybe, just maybe there is a hell of a lot more involved in that last trimester of development.

And for a little more comparison, here is Eliza in 2007,



And in 2008.



Happy should-have-been Birthday Eliza Grace.

The Island of Misfit Toys

Where is the Island of Misfit Toys when you need it? I was lucky enough to receive an email from Hasbro Toys offering a discount on the "Baby Alive Doll." Only $49.99 with free shipping! A bargain! Having been lured to the Hasbro website I was astonished to see that Baby Alive has been around for several decades and that continuous improvements have been made to Baby Alive so that your toddler's pretend play is more realistic than ever.

BABY ALIVE Doll (Caucasian)- Product Detail



The Product Description reads as follows:


Playing “mommy” is more fun than ever with BABY ALIVE, the doll that “eats” and “poops” like a real baby! Feed her or give her a bottle, and then get ready to change her messy diaper! She’s ready to play, laugh and talk with you… and you will love taking care of her!

When this doll is “hungry” you can mix up some of her special doll food! She really "eats" and tells you how she likes it with fun electronic phrases like, “Mmm…good!” She’ll even tell you it’s time to change her diaper when she says, “Uh-oh, I made a stinky!” When your BABY ALIVE doll is tired, she gets drowsy and falls asleep!

Doll comes with dress, 2 doll diapers, bottle with nipple and cap, bowl, spoon, 4 packets of doll food and bib.
Includes 4 "AA" batteries.

Baby Alive has even won awards:

NAPPA Awards – Honors Family Fun Grand Prize Winner & Top 10 list (#5)
Creative Child Magazine
Seal of Excellence Award
Dolls for Preschoolers Category

If the pooping Baby Alive doesn't suit you or your toddler, you could try

Baby Alive Pat 'n Burp



Or Baby Alive Sip 'n Slurp



Better yet Baby Alive Wets 'n Wiggles



Or my personal favorite, Baby Alive Sip 'n Snooze



I will admit to being fearful of Baby Alive Poops-a-Lot so since Eliza neither sips her bottle too often and has yet to fully enjoy a snooze, I'm going to order up a Baby Alive Sips 'n Snooze so I can finally figure what the heck these other parents are talking about when they tell me about their wee ones who plow through 60 ounces of formula a day and have take two hour naps. Pretend play can be so much more rewarding than real life!

Just ask the fine folks at Hasbro.

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: