… I think we’d all just rather that adjective was not applied to her eyes.

Both of them.

She’s good at taking eye drops, though.

Thankfully she got a copy of How The Grinch Stole Christmas for Hanukkah (oh, the irony) so that will buy us 90 or so minutes of quiet working time tomorrow.  And then the new Ponyville toys, those should keep her entertained as well.  Because oh, do the adults have work to do (final grades, grant proposals, papers, etcetcetc).

Wednesday when I picked S up at after-school, she looked kind of glazed and her cheeks were VERY rosy.  One look at her and I knew she had a fever.  (This was not entirely unexpected, as M has been battling a very tenacious virus since Thanksgiving – in his case it has decided to turn into bronchitis & an ear infection.)  Her temp when we got home was 100.7.  She also had a runny nose (which, let’s be frank, she’s had to some degree since school started) and a slight cough.

She stayed home Thursday, making lots of art and taking a 2 1/2 hour nap.  The fever never returned so we sent her to school on Friday and she was fine.

Yesterday she and I went to an SCA event.  We got there around 10:30, maybe 11 and at about 12:15 she climbed into my lap, saying she was tired.  I thought she might be hungry but she was also REALLY hot, so home we came.  We had some lunch and then she and I headed out to the after hours clinic.  By the time they got us in to see the doctor, her temp was 103.

But she shows no signs of anything bacterial – her lungs were “clear as a bell”, her ears and throat are fine.  So… it’s just a virus.  We came home & doped her up on Motrin and she and M lounged in bed watching ice dancing on tv while I cooked dinner.

This morning, she bounced into our room at 6:35, cool as a cucumber.

Yesterday at dinner Shoshanna was merrily telling us about going to the school library and checking out a book (Ezra Jack Keats’ The Trip, for those playing along at home) when suddenly, her face fell.  She completely crumbled.  As enormous tears started rolling, she managed to choke out, “I forgot to get it scanned!”

We attempted to reassure her, to tell her that she wasn’t going to be in trouble.  We told her that she should just tell Mrs. S. what had happened in the morning and that they would get it all sorted out.  We told her that she wasn’t going to be in trouble, that this sort of thing happens all the time.

She simply would not be consoled; nothing helped.  Hugs from Matthew.  Hugs from me.  Offers of eating her dinner while sitting in someone’s lap.

We finally hit on a solution.  I penned a note to her teacher which read as follows

Dear Mrs. S,

During dinner this evening, Shoshanna realized that she forgot to have her library book scanned.  She is very upset about this and would like to fix the situation as soon as possible.

Thanks,
Sarah

That seemed to solve it; the note came back this afternoon with a “no problem” in Mrs. S’s handwriting; Shoshanna reported that Mrs. S just took the book to the library to get it scanned.

… and now she’s reading us Magic School Bus chapter books.

If you want to be completely overwhelmed by preemie stories, here are the collected posts from yesterday.

November is prematurity awareness month, and November 17th is Unite: Fight for Preemies.

On November 17th, 2004, Shoshanna should have been seven weeks from being born; instead, she was 23 days old.  She was pushing three pounds, and, according to what I wrote at the time, starting to put on enough chub that sometimes she actually got warm rather than cold.

Fast forward five years… to the kindergartner who can read fluently, who can add and subtract like nobody’s business, who is fascinated by robots and wants to be a football player when she grows up.  I’ve said it before but I’m going to say it again: it is shocking how lucky we have gotten.  SHOCKING.  Every time someone asks me, “But she’s ok now, right?”* and I can honestly answer, “yes, she’s more than ok,” I think about how lucky we are.  Every time she shows me how high she can jump, every time I ask her what she did at school and she says, with a resigned sigh, “I can’t muh-member”, every night when I go in to check on her before I go to bed, I remember how lucky we are.

As lucky as we are, as amazing as Shoshanna is, we are reminded every day of where we came from.  Every morning when we give her her meds as soon as we all wake up, later on when we muscle her feet into her SureSteps, whenever we notice the scars on the backs of her hands.  She’s ok now, but our brand of “OK” just happens to include hypotonia, gross motor delays, and continuing GERD.  Our brand of “OK” has physical therapy twice a week and is being watched for fine motor stamina issues.  Despite all this, ours is the best possible “OK” we could have imagined on November 17, 2004.  In so many cases, a preemie family’s version of “OK” includes millions more challenges than the ones we have.

So what do we do?  We tell our story, we work with the March of Dimes.  We try to educate people both about the challenges that preemies face and about how to avoid having a preemie of their own.  We worry, about Shoshanna and how many more shoes there may be hanging over her head waiting to drop, and every time someone we are close to gets pregnant.  We refuse to buy presents for babies-on-the-way before 36 weeks gestational age, and we calculate gestational ages and odds and potential problems in our heads every time we talk to a pregnant friend or acquaintance.  This, too, is part of our “OK”.

Today is prematurity awareness day, but for everyone who’s living the preemie experience, it’s just another day living that redefined version of “OK”.

*It should be noted that the only “acceptable” answer to this question is yes.  As many of my fellow preemie parents have observed over and over again, nobody wants to hear about the problems of the older preemie, no matter how life-altering those problems may be, and especially if the child shows no physical indications of ongoing challenges.

Watch this space for a big post on Tuesday for Unite: Fight for Preemies.

But today, today I want to tell you a story of a conversation that we had on Thursday while were were at Children’s for Shoshanna’s GI scope.

If you’re up on your March of Dimes trivia, you know that MoD funding helped with the development of the artificial surfactant that micropreemies need to even be able to be mechanically ventilated.  You probably don’t know the other piece of the surfactant story, though, which is that it was developed in Buffalo and tested at WCHoB.

As we were chatting with Kathleen, the recovery nurse on the procedures floor, Shoshanna’s gestational age at birth came up.  Kathleen commented that she spent the early part of her career in the NICU, and that she had been involved in the early surfactant studies, when it was still very experimental.

We thanked her.

 

On our way home now.

Originally uploaded by sarahmichelef.

Shoshanna was a champ for her upper endoscopy today. We got to the hospital at 10 and went through all the history, etc. With shoes and abi, she weighs 20.2 kilos (44.4 pounds) and is 43″ tall. Her runny nose is just that – a runny nose; she has no congestion in her chest at all (which actually saves us a trip to the ped to address the situation). So she was all cleared to get her belly looked at.

The number of people who traipsed into and out of our room were very overwhelming to Shoshanna. We got lucky and the time between when they made sure she was healthy enough for the procedure and when anesthesia came in to talk to us was exactly the length of They Might Be Giants’ “Here Comes Science” DVD.

The process was as follows:
1) Laughing gas. The anesthesiologist gave her the choice of grape, strawberry, or watermelon and she chose grape. I commented that the mask had purple smeared on it and the response was, “That’s ’cause I use flavored chapstick for the smell!” And that, ladies and gentlemen, is why Dr. Nicole is cut out for pediatric anesthesia.
2) Anesthesia, in gas form. She goes out about as fast as I do, and just as they were warning us that some kids thrash and fight the mask, she did, but that only lasted a couple of seconds and they ushered us out in what Matthew called “The politest ‘get out of here’ ever.”

After we were out of the room they placed an IV and intubated her so as to better protect her airway. I told them it was fine as long as I didn’t have to SEE her intubated. Then they did the actual procedure.

About 20 minutes after we left the room, the GI fellow came in to show us the pictures of her gut – which looks perfect; there’s no scarring or anything from the reflux. We’ll get the results of the biopsies they took in about 10 days.

They came and called us in to the recovery room 5, maybe 10 minutes after we talked to the GIs. Shoshanna came out from the anesthetic really quickly, and we were out of the hospital about half an hour after she woke up. Within an hour and a half she was back to behaving completely normally. She ate a decent-sized lunch of chicken soup, apple sauce, and ice cream and now we’re watching Sleeping Beauty. I think we’ll drag her outside to play when the movie is over; the weather is beautiful.

Shoshanna has asked me to add:  She had soft food to eat.

Edited to further add:  Shoshanna told me as she was getting ready for bed last night, “Mama, I had a good day off.”  Strange child.

Shoshanna has been seeing her new school physical therapist for a couple of weeks now.  I had the opportunity to chat with her on the phone last week.  During that conversation she informed me,

If I had to build a kid, it would be Shoshanna from the ground up.

Now, let’s leave aside the fact that she would be building a kid who needs physical therapy, etc., is it any wonder the kid thinks she’s the world’s gift to grownups?

… an upper GI endoscopy with tissue biopsy.  I don’t think I mentioned it, but we concluded in early September that the Dread Pirate Reflux was back in full force.

Honestly, I’m not sure it ever really went away this time.  We took her off of meds in March and, to be honest, she had a runny nose pretty much constantly all summer.  Of course, she also had strep throat twice during that time, and it’s likely that she does have some seasonal allergies, but … in early September she started making this half-throat-clear, half-fake-cough noise that we know means, “my throat hurts ’cause it’s got stomach acid in it” and we put her back on her Prevacid right away.  And lo and behold, the runny nose and the throat-clearing quit.  Of course those are back now that we’ve had cold after cold after cold thanks to school.  But the reflux is back under control.

So on Thursday they’re going to knock her out (yes, this involves general anesthesia) and have a look to see what they can see in her GI tract; they’ll take some tissue biopsies which will tell us if the reflux is being triggered by a food allergy.

Shoshanna has gone through phases of being quite anxious about the procedure.  She knows that she will get medicine so that she’ll take a nap while they use the camera to look at her esophagus & stomach.  She knows that that medicine will be delivered via IV.  And she knows that she will not be allowed to eat breakfast that morning.  She was kind of fixated on the IV thing, because she knows that the scars on the back of her hands are from IVs in the NICU (which you can see if you look closely in the pic above).  I reassured her that I really doubt that this IV will leave a scar, and pointed out that I had two IVs when she was born and don’t have scars from them.  (Which is a lie; if you know where to look you can see where one of them was but I often have trouble finding the mark myself so I don’t think it counts.)  But I think the thing that helped the most was watching a video about IV insertion and reading articles about GERD and going to the hospital on kidshealth.org.  I told her that she can watch/read them again whenever she wants before Thursday.  And we made plans including going out to dinner on Wednesday night wherever she wants, and today we went grocery shopping for things that will be good to eat with a sore throat (double duty there – one of her homeworks this week was to write a shopping list and then go shopping with it).  This morning she told me, “I was scared about my tummy pictures but then we talked about it and now I feel better.”

So stay tuned to hear how it goes, and maybe if you’re all REALLY lucky I’ll post pictures of Shoshanna’s insides.