Thanks and Gratitude

This year, as last year, I am so very thankful to have Eliza Grace and to have her as healthy as she is. Thanksgiving this year was spent with family. Eliza's Uncle Stanley introduced her to her first set of horses:



Eliza Grace also got to try out Aunt Cindy's "Teetertot," a toy many of us recall, but which I am sure would no longer get the Consumer Reports gold star for safety:



However while enjoying the Teetertot, Eliza Grace was rudely licked by our favorite border collie:



At the holidays we always look back and give thanks for the year before. I am so very grateful for Eliza's amazing progress from those very dark days in the Lenox Hill NCCU. Her cognitive abilities are amazing, despite some speech delays, her eyesight is unaffected by her ROP, her lung function continues to improve, her motor function is, well pretty impressive for such a tiny girl, she climbs on everything and shows no fear. She does not however eat and that problem has been worsening almost daily and she will likely need a g-tube before the year is out. But even that's OK because I know it will help her to get the nourishment she needs to continue to do well.

Someone said to me not too long that I did not seem "grateful" enough that Eliza was doing so well, that she had her sight, her hearing and her cognitive abilities. I have had people tell me that "it could be worse," and of course they are right, life could always be "worse" for any of us. I suppose it could appear that I don't focus enough on Eliza's progress since I, like most people I suppose, tend to sometimes focus more on life's problems and not enough on the things that are going right. But despite what some folks might think I am very grateful that Eliza was spared many of the obvious effects of extreme prematurity. I am so very grateful to the doctors and nurses at Lenox Hill who never once stopped giving their very best to Eliza, especially during that very ugly first month of her life.

But I do think we can be grateful for our children's lives and how well they have escaped "most" or "many" of the effects of extreme prematurity and yet still wish that they had escaped "all" of those effects. Being angry that our children have to continue to suffer the effects of their early births does not mean that we are any less grateful for our children's lives than any other parent is.

So this Thanksgiving, I am deeply grateful that Eliza is my amazing little girl, even if I am angry that she still has to suffer because she was born too soon.

Where's Eliza?

Is it a scarf?



It's moving!



It's Eliza!



Or is it prisoner # 23494?

Taking Time

Yesterday a friend called and wanted me to meet her for a drink in the evening. After explaining that (a) Eliza was sick and (b) even if she wasn't sick it was highly unlikely that Eliza would quietly sit in the local tavern while we sipped martinis. She seemed a bit put out by this explanation and asked why I couldn't just leave Eliza with a sitter for the evening. I tried to explain that first off, this being Manhattan there really weren't a whole lot of baby sitters hanging about waiting to be called for a job on a Saturday night. I also tried to explain that since Eliza would need her nebulizer treatment every couple of hours and would likely vomit at least half of whatever she was fed, these facts alone pretty well eliminated most "baby sitters" since they are really not interested in holding down a screaming toddler for about 5 minutes while trying to keep a mask strapped to her face, nor would I trust them to do so, to say nothing of cleaning up vomit. Hiring the nanny for the evening sounds good on paper but is somewhat financially unappealing since in addition to her fee, the car service to take her home at night is about $60. So after a half hour of trying to convince her to come to the apartment for a glass of wine, I gave up.

I did however get a very nice lecture from her on how I need to "take time" for myself. It was suggested yesterday I should at least take a day at a spa, or even a few days away scuba diving. So I asked D if she was going to come take care of Eliza while I was away in the Bahamas scuba diving or even for the day at the spa. This was met with notable silence. Which brings me to the point of this whole thing.

I realize I risk being accused of being a whiner here, but too bad, it is my blog. I find it pretty ironic that the very group of people (and it is quite a large group) who continually lecture me on the need to "take time" for myself, is the same group of people who have never once offered to watch Eliza even for an hour, let alone a day. Who do they think will be caring for Eliza while I'm at a day spa? What is the point of continually lecturing me on the need to take time for myself when these people, who know full well there is no one to care for Eliza while I'm out having a grand old time, apparently live in abject fear that I may actually ask them to watch Eliza for 15 minutes? In the 16 or so months that Eliza has been home, other than three days a week since I went back to work a year ago, the longest she has been left with someone is two hours. I would rather spend time with Eliza than "take time" for myself. She brings me endless joy and we have a grand time together. So gentle readers, you can stop telling me to "take time" for myself. If you chose to continue to tell me to "take time" then you should be prepared to watch Eliza yourself.

The Long Lost Vacation Pictures

As you may remember last month Eliza and I went on a short vacation to Williamsburg, Virginia, where I had gone to college. We met up with my old roommate, Marilyn, to see what had become of the 'Burg.

Lucky for us we were reminded that in Colonial times children who refused to eat were publicly humiliated by a few hours in the stocks. We tried this public humiliation with Eliza:



Clearly this just made her mad, but not hungry:




We did get to see some old friends:






And Eliza got to make some new friends:



And we found the dopiest excuse for a theme park, "Presidents' Park" where you too can see larger than life busts of all the presidents, sort of like an American version of Easter Island:



And we also got to spend some time on the James River:

I'm It!

I'm It ...

Sarah Furlough has tagged me, so I guess I'm it!

Here's the meme:
- Share 7 random and/or weird facts about yourself.
- Tag 7 random people at the end of your post, and include links to their blogs.
- Let each person know that they’ve been tagged by leaving a comment on their blog.

Here goes:

After reading Sarah's "7 weird/random facts" it appears Sarah and I may be twins separated at birth because....:


1. I too am deathly afraid of the dark. If I have to get up in the middle of the night, I have to turn every light on before I can walk around. Oh and my kitchen light hasn't been turned off in about ten years.

2. I too hate most all orange food except, curiously, oranges.

3. I love to travel, but I hate to unpack (unlike Sarah, I don't mind the packing part).

4. My favorite times are the weekend mornings with Eliza sleeping on my chest when I know we don't have to get up for a therapist's visit or doctor's appointment.

5. I once had to have a BB removed from my butt. (pretty close to Sarah's surgical removal of a splnter!)

6. Thanks to four days with no electricity on Saba I can now bake bread and apple pie using only my gas grill (beat that one Rachel Ray!)

7. If I could live anywhere is the world, it would be Saba, despite it being only five square miles.

I tag...

Bree, Katie, Cerissa, Tracey, Jenny, Marilyn and Gita
(for those of you without a blog, you can post your "facts" here in my comments section)

Endoscopy Day

Eliza is home from NYH and is back to her old self after her endoscopy. I think waking her up at 6 a.m. was possibly the most traumatic part of her day (it is an ill-kept secret that Eliza is up until 10 p.m. and sleeps until 8:30 a.m.). The staff at NYH are really quite good when it comes to these things. There is a Child Life Therapist in the waiting room to keep the kids entertained and the waiting time was pretty minimal.

The endoscopy revealed a perfectly normal healthy esophagus, stomach and duodenum. The biopsy results will be in on Friday or Monday, although Dr. R. said he would be surprised if there was anything awry there. As a "bonus" the anesthesiologist said her trachea looked great for a kid who was on a vent for two months.

So where does this good news leave us? Who knows. Eliza last ate at 8 p.m. yesterday and has only had one ounce of Resource JFK with oatmeal since she was allowed to eat a few hours ago. She is not acting hungry and is pushing away the bottle and spoon as usual. If the problem is purely behavioral then we'll have to move on to a more intensive feeding therapy. I suspect after seeing Eliza rip out her IV today, which had to hurt, Dr. R. may realize that trying an NG tube is an exercise in futility since I am doubtful there is enough surgical tape on the east coast to keep a feeding tube in Eliza's nose for more than five minutes.

The New Plan

The latest plan to decipher Eliza's eating problem is to have her undergo an endoscopy on Tuesday with a biopsy to see if that can resolve, or at least rule out, any issues with her stomach that may be causing her eating problems. If all is well there, then a trial run with an NG tube is the next step. If she gains weight with the additional calories from the NG tube feeds then we'll discuss further a g-tube. If she does not gain any weight with the addition of the NG tube feeds, then some more detective work will be needed to figure out this weight gain problem. If it appears that the problem is entirely behavioral, then we'll revisit her current feeding therapy to see if there is something else/different that can be done.

We have to get to the hospital fairly early on Tuesday since thankfully they don't keep the smaller babies waiting too long (or so they say). Of course, with my luck, this will be the first day that Eliza ever wakes up hungry.

I know I'm tired of writing about eating/feeding or lack thereof and I am sure everyone is getting tired of reading about it! I hope that someday soon I will never have to write about this again.... hey a girl can hope, right?

The Joys of a Teaching Hospital

Eliza had a check up with her pediatric GI on Friday. Since he is at a teaching hospital, there is a Fellow who you are seen by before Dr. R makes his appearance. Now I don't mind in theory "helping" these folks to become better doctors, but sometimes they seem to be incapable of looking beyond what they have been "told" is correct by some text book. Eliza has historically been constipated so she has been on one medication or another for the problem. Dr. R. had switched her from lactulose to miralax about 6 weeks ago. Given that Eliza is only taking 2 to 3 ounces at a time it was virtually impossible to get the right mixture of miralax for Eliza because she can't consume 8 ounces at a time which seems to be the minimum amount of liquid you can mix this stuff with to avoid a nasty grainy mixture. So after some trial and error, I switched Eliza back to lactulose and she is happily pooping once again ... which brings me back to the pediatric GI Fellow. Dr. Fellow, I'll call him, kept adamantly insisting that miralax could mix with anything and that I should really be using it instead of lactulose. After listening to his testimonial to miralax, I finally asked him if he himself had ever in fact tried to mix it with anything, let alone a fairly thick formula like Resource JFK 1.5. Indeed he had never tried to mix miralax with even water. I suggested he give it a try before he lecture me on my "inability" to get the stuff mixed properly and to be cautious before he told another parent how to administer one medication or anonther unless he himself had tried to get the same thing into a very annoyed toddler. Ahhh the joys of a teaching hospital.

It's All About the Math

So I had thought Eliza had made some good progress since she ate a few ounces of yogurt and some pureed bananas. I was pretty excited about this development for oh, about 18 hours.

Then I did the math to convert the volume to calories and guess what? She is still only taking in 700 to 800 calories a day, and this is accomplished only with the addition of 330 calories of Benecalorie to her yogurt. This is not the 1000 calories she needs to "maintain" and certainly not the 1200 calories she needs to "grow." No matter what combination of high calorie formula and Benecalorie laden "food" I come up with, she is no where near the caloric intake she needs. If the Benecalori causes her to start vomiting nightly again, then we are back to 400, maybe 600 or so calories per day.

This struggle to get Eliza to eat "normally" has been going on for a year now. Despite all of her therapy for the past year, she has only been able to move from a strict formula diet to the inclusion of a bit of yogurt and some purees, which are of limited nutritional value due to the limited amount she eats. Everyday for the past year Eliza's food and formula have been measured to the quarter ounce and every calorie has been counted (I've even looked to see if her vitamins have any caloric value). Our lives revolve around food and it is becoming apparent that we cannot live like this much longer. Maybe a g-tube would be for the best since it would mean that Eliza could just be a toddler without constantly having a bottle shoved at her, being awoken in the night to get a few more ounces in her or being stuck in a high chair for extended periods of time trying to get her to eat. She could learn to eat in her own time and the focus could be on what she eats, not how much. It is not normal for it to take an hour for a child to eat 2.5 ounces of yogurt, all the while pushing the spoon away or shaking her head and only taking a spoonful here or there when she is not paying attention. So unless there is something to this delayed gastric emptying theory, then I really see no other choice for this child to have something resembling a normal life.

WooooHooooo

So tonight at dinner an unheard of event occurred. Eliza ate ... are you ready ...
an entire container of Gerber banana puree (3.5 ounces) and 2 ounces of Yobaby yogurt! It did take an hour, 2 rounds of an inane Baby Einstein video and some bubbles but who cares. Personally I think she has figured out what all this talk of a g-tube is about and decided she better change tune ... or could it be the new and improved dose of prevacid?

Wish us luck for tomorrow!

Progress?

Yesterday and again today Eliza actually took a spoon with some baby food and yogurt on it and put it in her mouth ... voluntarily ... not once, but three or four times. Both her OT and I were quite surprised today since frankly I thought yesterday's event was a fluke. She has also a few times now stuck her hand in her yogurt or puree and then licked her fingers. Oddly she also does this with the jar of Aquaphor when I am dressing her after her bath. I can only hope there's nothing toxic in this stuff since a couple of times she got her fingers in her mouth before I could stop her! There is absolutely no rhyme or reason as to what goes in her mouth and what she refuses to try. Today she also took 3 ounces from her bottle instead of the two ounces she has been taking. Overall I'd say Eliza made some splendid progress.

We made a short trip to the NCCU today (when I say short, I mean short, it's about 100 yards away) to visit a new friend and got to see a few of Eliza's nurses and one of her doctors. It's always a treat to see these folks since they took such very, very good care of Eliza. It's also reassuring to see the NCCU doctors and nurses because they really can put her progress in perspective for me when I get too focused on things she can't do yet.

So tonight I'm hoping for another spoonful or two at dinner ... hopefully a puree and not Aquaphor!

The Two Ounce Stomach

Ever since Eliza came home almost 16 months ago she has never, ever, ever consumed more than four ounces of formula at a time. I have been told "she has a small stomach." Well I was willing to buy that for some time, although considering the rest of her has grown, not much mind you, one would think her stomach had also grown. No such luck. In fact this past week it seems her stomach has in fact shrunk. For the past week she has rarely been able to consume more than two ounces at a time. I can only imagine what explanation I'll be given for this new development when I see her GI on Friday. I am fairly certain that the majority of the medical profession believes that parents, like me, are blooming idiots and that any nonsense they try to pass off on us will be happily accepted by us.

Just When You Thought It Was Safe

So I thought we had reached a magic moment here today .... 13 ounces of Resource JFK, 13 baby spoons of yogurt. Maybe 13 is a magic number for us? Maybe I should play number 13 in roulette (I know nothing about gambling ... can you play 13 in roulette)?

BUT just when I was starting to feel better about this digestive turn about .... Eliza decides that developing diarrhea would really top off my day. So there you have it. And here I thought the biggest dilemma I was going to have tonight was whether the chocolate or strawberry pediasure would blend better with my furnishings when it came back up in the middle of the night (normally I go with French Vanilla during the vomit-fests since it blends best with my decor, but I've run out).

Have I said "oye" today?

Not Well

Since last Thursday night, after Eliza aspirated some vomit, she has refused to eat anything. I should clarify: Eliza has refused to eat her usual whopping 2 to 4 ounces of yogurt a day. Normally on days when she won't eat she would take in 20 or even occasionally 24 ounces of formula. Now she is taking in only a total of 12 ounces of formula on a good day, closer to 10 ounces on average. Four of these ounces have to be given to her an ounce at a time while she is sleeping at night. We've been to the ER for dehydration, which was an abject misery. Eliza's feeding therapist has no idea what to try next. God only knows what the nutritionist is going to do each week since Eliza will not eat anything. The GI wants her to be over her lung problems before he starts investigating the cause of this latest refusal to eat.

In addition to taking in only the bear minimum to stave off total dehydration and barely maintain homeostasis, she now gags at the very sight of a bottle. She can no longer tolerate her nebulizer treatments since the mist blowing on her face makes her hysterical. She has to have her mouth pried open in order to get any meds in. Her vomiting has lessened, from every other hour at night to about 4 times a night. At this point getting enough calories to "grow" isn't even an issue, the focus is now on getting enough fluids not to dehydrate. I am really unsure how long she can go on like this.