2 months ago she wouldn’t read us ANY books…
Posted by: Sarah on: November 20, 2009
… and now she’s reading us Magic School Bus chapter books.
Fight for Preemies Posts
Posted by: Sarah on: November 18, 2009
- In: Links
- Leave a Comment
If you want to be completely overwhelmed by preemie stories, here are the collected posts from yesterday.
Redefining “OK”
Posted by: Sarah on: November 17, 2009
November is prematurity awareness month, and November 17th is Unite: Fight for Preemies.
.jpg)
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.
Another one for Prematurity Awareness Month…
Posted by: Sarah on: November 15, 2009
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.
Coming out of the fog…
Posted by: Sarah on: November 12, 2009
- In: Adventures
- 2 Comments
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.
And we wonder why she has such an ego…
Posted by: Sarah on: November 11, 2009
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?
Coming this Thursday to a Shoshanna near you…
Posted by: Sarah on: November 8, 2009
- In: Adventures
- 3 Comments
… 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.
Birthday Party and Halloween!
Posted by: Sarah on: October 31, 2009
- In: Adventures
- 2 Comments
As I think I mentioned before, we postponed Shoshanna’s birthday party – the third week of school at a new school was just too crazy to contemplate. She desperately wanted to have it at the bounce place so we booked it for today, not because of Halloween, but just because it was the most convenient day for us.
So we had about 10 kids at Leaps & Bounce for pizza, cake, and more running around than you can imagine. You can get half an idea of how crazy the place is from this picture… at the end is the inflatable jousting arena, which is just general bouncing when there’s no one jousting. The rainbow-striped thing next to Shoshanna and J.V. is a kind of maze that finishes in an extremely steep slide. At the end of the room is another (less steep) slide, a “generic” bounce house, and a garden-themed on with mushrooms and a little slide and other stuff in it. 
And, lucky her, she got to see Jordan for the second time in 8 days. We’ve all been so busy that the girls haven’t seen nearly as much of each other as they would like.
Anyway. Shoshanna had a blast, many of her good friends were there, and OH do her friends know her – we have so many craft projects in our future – and she was ALMOST asleep when we got home. She did nap, thankfully. Because she had to get her energy up for trick or treating!!!
As usual, Evil Auntie Eilis outdid herself, with possibly the most bizarre Halloween costume request ever. See, when our friends were here in July, Ben showed us this video. And Shoshanna IMMEDIATELY wanted to be the purple girl. Why? I have no idea. But lo and behold, here we have her.
Updates ahoy!
Posted by: Sarah on: October 19, 2009
Lots of things to report, most of them school-related. Read the rest of this entry »
- Jaybetee: Jason here from BloggersUnite. Thanks for being part of the BloggersUnite event, sharing your story and helping to raise awareness for the March of Di
- Sadia: You make such a good point. My 33-weekers are more than "OK". Yes, they get lung infections from time to time, but they're ahead of the curve on all t
- MoDAzzy: Sarah: Thanks so much for sharing your story. It’s great to hear that Shoshanna is doing more than "ok" . Thanks for your support and for everyt
Flickr Photos
|
The human brain is a very strange place…
Posted by: Sarah on: October 5, 2009
Shoshanna’s fifth birthday was the easiest by far. We were both so busy and she’s loving life so much right now that it wasn’t particularly traumatic.
This week, though, I’m getting ready to go to an academic conference. It’s the same conference that I was at just before Shoshanna was born, and I’m remembering that getting ready to go two years ago was a little weird, too. This time, to make things even more crazy, I’m traveling with a friend who I was going to bum around Brighton with for an afternoon after the conference five years ago but we miscommunicated about where we were meeting. Would I even remember that if it hadn’t happened right before Shoshanna was born? Probably not. But making plans to meet up with her on Wednesday morning so we can pile in the car and drive to Milwaukee was making me really anxious.
Just goes to show that the brain can still be a little traumatized even five years later.
In other news, a local woman gave birth to 25-week quints last week. I’m avoiding the news coverage, though, because it will just make me angry with its misinformation and false optimism.