Friday, November 11, 2011

because you can't, you won't, and you don't stop

I know, this post is long overdue. Most of you already know, but Emma is okay. Penelope, Dan and I just hung on for the ride, because what else can you do, really?

We waved goodbye to her as she was wheeled off to surgery, and then we waited. Too tired to knit, I tried to read a little. We were fine, really; just waiting, waiting, waiting. It wasn't until Dr. Z, the cardiologist, came out to talk to us, insistent that we find a room, that we got nervous.

During the surgery, while Dr. W was scooping out enough surrounding tissue to ensure that the membrane would not grow back, he created a small hole between the aorta and the left ventricle. He stitched it up but the stitching didn't hold when they restarted Emma's heart; the hole reopened.
Dr. W put her back on bypass was patching the hole with Teflon as we spoke. The thing that Dr. Z was actually concerned about, though, was Emma's rhythm -- her heart was beating too slowly, and Dr. Z was worried that the heart's electrical system had been damaged by the surgery (this is called "heart block"). There was nothing to do for this but wait and see, while keeping her hooked up to an external pacemaker

They gave it about seven days before they concluded that her heart was not returning to a normal rhythm, so now Emma has an internal pacemaker.

That's the quick version. The long one?

After Dr. Z left us, I emailed, then called my mom (she and my dad were here to take care of Penelope while Emma was in Boston). She answered the phone and I said, "How scared do we need to be?" My mom, my wonderful mom, Nurse Grandma, told me "Honestly, not very," and Dan and I both started breathing again. We filtered everything through her; she translated it for us, then we told Dan's parents and put it up on Facebook.

That first night, I stayed in the parent room down the hall, and checked in on her a few times; knowing they would come and get me if something was wrong didn't make it any easier to sleep; I wanted desperately to be with her, but there's just not room enough for the patient, the parent, and the respirator. Necessarily, it's the parent that gets kicked out. She was hooked up to the external pacemaker, so she had several wires just sticking out of her chest and belly in unexpected places; an IV line in her right hand, as well as one in her neck, both of which were in use; two chest tubes in her belly to drain fluid from her chest cavity; the catheter (everyone's favorite!); the pulse-ox monitor; and the nasal tube. Even though she was doped up, she wanted to sit up. Dr. D, the anesthesiologist, was amazed (pleased, really) at how many times she tried to sit up on her own, even on the morphine. (That's not to say that the doctors and nurses were pleased, but to Dr. D it was confirmation that Emma had tolerated the anesthesia well.)

The next morning (June 16), Emma was extubated about two hours ahead of schedule (another good thing); the gastric tube was removed early that afternoon, and she began with Jello and Popsicles, in spite of the fact that what she really wanted was potato chips. She also watched a video message from Penelope and recorded a short response.

That night, the nurse and I had to change Emma's dressings several times; one of the leads to the external pacemaker was acting as an extra chest tube. Although this was ultimately okay (better out than in!), the dressings were completely soaked every 60 minutes or so.

I got almost no sleep; each dressing change took about an hour, because Emma had to be cleaned up and the bedding and hospital johnny had to be changed in addition to the dressing. The whole time, Emma was incredibly patient, but by the time each change was done, Emma and I were both wide awake and it took quite a while for us to settle back down and fall asleep. By the time we were asleep, it was nearly time for the dressing to be changed again. As it was, the nurse let it go a little longer than she would have during the day, but it was still grueling.

The next morning, they took her off the morphine (which made her very nauseated) and started her on Toradol with Tylenol as needed; her appetite picked up and she had some real food (chicken salad) for dinner. We also got the okay (from the PICU's head nurse) for Penelope to visit the following day. Seeing her sister was an enormous boon to Emma's spirits! Before I arrived with Penelope and my parents, Emma was de-lined: the catheter and arterial lines were removed, as were both chest tubes. The seepage around the one pacemaker lead was slowing down a bit.

Penelope visited again on Father's Day. A nurse caught sight of Emma's smile as Pen entered the room and declared Penelope "the only one who can make Emma smile!"

Later in the day, Emma had a visit with A, a social worker from the ChildLife program; A and her coworker, L, would keep us informed about how Emma is handling everything emotionally. So far, she is right where they would expect her to be.

The doctors have decided that she's definitely getting a pacemaker; at this point, it's a matter of getting on the OR schedule. From this point, I'll let my Facebook posts take over.

June 19, 8:50 pm: There's my Emma's infectious giggle! Thank you, Disney Channel's So Random!

June 20, 7:43 pm: Emma's pacemaker will go in on Tuesday . . . no, Wednesday . . . no, Tuesday. Okay, Tuesday afternoon officially.

June 21, 2:36 pm: . . . and we're baaaaaaaaaack! To Wednesday! We're perfectly willing to be bumped, however. Heart-transplant trumps still-kinda-working-heart. Emma was just relieved to be able to eat.

June 22, 9:31 am: Dr W's just been sent home to sleep. Emma had a bowl of Cheerios at 6:30 and is now on No Food or Water. She'll go in for her pacemaker this afternoon.

June 22, 9:42 am: The echo team is in, now. Still haven't had rounds come our way yet today. Gnomeo and Juliet is on . . . again!!! ;-) Aunt Reeb wonders (via comment field) if Emma has memorized it, yet, and Emma responds "Basically, almost the whole thing!"

June 22, 10:06 am: Rounds have been by, now; surgery will likely start between 12 and 2 this afternoon.

June 22, 2:12 pm: Bumped AGAIN! It's Transplant Week! Tufts has a kidney transplant inserting itself into the midst of the logjam created by yesterday's (okay, last night's!) heart transplant. The PA says Emma will definitely go tomorrow; they don't want her wait another day.

June 22, 4:26 pm: Dr W. is hoping to get her in as first case on Thursday. He spent half the afternoon skulking around, trying to snag an OR today to no avail.

June 22, 7:30 pm: We're officially on the schedule for 7:30 am Thursday! NPO (Again!) from midnight, tonight. Third time lucky?

June 23, 8:01 am: Dan called at 7:40 & Emma is in surgery!

June 23, 12:03 pm: Emma ROCKS!!! She was out & awake by 10:30. She's currently back in the PICU, resting and watching her dance recital DVD.

June 23, 2:02 pm: Emma has had some strawberries & some applesauce, & is currently FaceTiming w/ Penelope. Earlier, Dr. D was in & laughed at the fact that Emma was already sitting up & playing games on Webkinz.

June 23, 6:14 pm: According to Nurse K, Emma is amazing. Nurse K says she's going to tell all her cardiac patients now to "Be strong; be an Emma!"

June 24, 12:14 pm: When I got off the elevator this morning, Emma and Dan were in the hallway, waiting for me! The girl kicking butt and taking names? That's my daughter!!

June 24, 6:06 pm: Took a walk all the way down to the 1st floor gift shop with Emma & bought a few small things. Then we wandered over to Au Bon Pain & she ordered a tuna salad sandwich, chips, lemonade, & a chocolate chip cookie for dinner.

June 25, 11:48 am: Thank you, thank you, thank you, everyone who kept Emma and our whole family in their thoughts this past 10 days! Emma is home, the beagle has calmed down, and my twins are being normal, 8-year-old twins once again!

Yes, she has a medic-alert bracelet, now. The pacemaker is for life, and she's not allowed to do backbends or the Worm. Certain amusement-park rides are verboten, blows to the belly are cause for concern, and she will forever be the Pat-Down Princess in airports. I'm trying to help her find a response that she's comfortable using when strangers ask her about her scar (which is visible when she wears a v-neck shirt or a swimsuit). But she's been on her bike again since the beginning of August, and she's back in ballet/tap/jazz and Hip-Hop. She's thrown herself back into roller skating Fridays with gusto. We even had a Harry Potter Film Festival in July, because the girls wanted to see the movie in the theater with us! People who don't know what happened would never be able to guess.

Wednesday, November 9, 2011

Do you expect me to write?

Even though I hate large portions of the story I wrote last year (that story will remain forever hidden in the deepest of archives on my computer), I couldn't wait to sign up for another 30 days of NaNoWriMo insanity. Last year -- you remember! -- I signed up to do NaNo, then I broke my wrist. Yeah. That wasn't among the brightest of strategies, I'll admit. BUT! I didn't just manage to win NaNoWriMo, I met my goal with four days to spare!

This year, I have a new tool in my arsenal: Write or Die.

Write or Die (Putting the "Prod" in Productivity) is basically a motivational tool using negative reinforcement to keep you writing. The link above will take you to the main screen, and if you click the Web App button on the left, it jumps you to a small box where you can get started. I recommend fiddling around with it for five minutes to get a feel for the different grace periods and how effective you find the different levels of consequence. I'm not too fond of Kamikaze level consequences (which deletes your work one word at a time if you stop writing for too long), but I do prefer the Evil grace period (Don't even think about taking a sip of that tea! Write!). The idea is to get that inner editor silenced, after all.

I've even sucked Penelope and Emma into using it for their own NaNo stories. While Penelope has thrown herself into the NaNo experience with gusto, Emma has a particularly persistent internal editor. Couple that with her natural tendency towards perfectionism, and you have a recipe for disaster. (Why are you hitting yourself? Why are you hitting yourself? Why are you hitting yourself?) I set both girls up with the Normal consequence (they especially like hearing Banana Phone) and the Forgiving grace period, set them an attainable goal and time limit, and turn them loose.

While there are downloadable versions available for a reasonable fee, the Web App works just fine for me. (Ask me again, though, after I've been stuck for a while with my own internal editor and no internet connection.)

Give it a try, and Happy NaNoing!

Friday, June 3, 2011

be still my beating heart

People we see on a fairly regular basis, as well as most family members, already know that Emma has several congenital defects in her heart. To everyone else: Emma has several congenital defects in her heart. (Surprise!)

The worst of the defects, called Coarctation of the Aorta, was repaired when she was just 17 days old. Basically, it was a very narrow section of her aorta, and prevented adequate blood flow to her extremities. Since we were still brand-new parents wrestling with the reality of actually having two real crying, hungry, pooping, helpless babies, the whole thing was kind-of a blur. It wasn't until Emma was back in the PICU, puffed up on IV fluids and hooked up to every machine in the hospital (including the most expensive one and the one that goes "ping!") that we really felt scared.

Since infancy, Emma has had annual visits with a pediatric cardiologist to keep tabs on the next most serious defect, called Subaortic Stenosis. This defect is basically a membrane growing across the aortic valve, between the left ventricle and the valve itself. The membrane affects the bloodflow into her aorta; instead of flowing straight through the valve like it's supposed to, the blood swirls around and hits the valve itself. The effect of the blood hitting the valve day after day, heartbeat after heartbeat, eventually causes it to start leaking. In Emma's case, her aortic valve is also bicuspid instead of tricuspid. (For the record, Emma's fourth and final heart defect is a stenotic (narrow) mitral valve.)

This year, after reviewing her echocardiogram (ultrasound of her heart) Emma's cardiologist and surgeon agreed that the leak is starting to get worse. In the past year, it has gone from holding steady at "trivial" to deteriorating to "mild-to-moderate." In order to (we hope) slow or possibly halt the deterioration of her aortic valve, the doctors want to remove the membrane now, before the leak progresses to "severe."

Removing the membrane will require open-heart surgery. On my Emma.

This past Tuesday we met with her cardiologist again, had all her pre-op work done, and had a brief visit to the PICU at Tufts Floating Hospital for Children in Boston. Emma got to see a room similar to the one she'll be in, and was reassured to know that she'll have me either in-room with her or right down the hall (while she's still on a ventilator & sedated). She also got to meet her surgeon, Dr. Warner; he's the Chief of Cardiothoracic Surgery and the same surgeon who repaired her coarc eight years ago.

It's bizarre to consider the reproductive future of your eight-year-old daughter, but we want to keep Emma's factory-original parts in and working for as long as possible. If she ends up with a mechanical valve, it will complicate any future plans for pregnancy. Likewise, biologic valves come with their own risk of rejection. The longer Emma's own valve -- defective and misshapen though it may be -- can remain in her heart and working well, the more control Emma will have over her adult life.

Right now, we're trying to strike a balance between quarantining Emma completely (thus scaring the piss out of her) and maintaining the status-quo. Some of the things we would normally only be bugged about (like playing with a neighborhood kid whose nose is running like a soak-hose) are things we need to prohibit until after her surgery. We feel a little paranoid, but this is one of those times when paranoia is a good thing. According to the surgeon, once Emma is home, she can "resume normal activities" with the temporary exceptions of roughhousing and contact sports.

It's a good thing she's been considering taking a break from wrestling. See? It all works out!

Thursday, May 26, 2011

let's take the car and save the fare

As of this afternoon, we are back to being a two-car family. We made it work with one car for just shy of eleven months, and could have gone a bit longer if our lives weren't about to hit a speed bump in the next few weeks. We'll need a second car for the upcoming drives in & out (and in & out, and in & out) of Boston next month. More on that another day.

After looking at and driving both the Toyota Prius and the Hyundai Elantra, we went with an Elantra. At this point, we just can't argue with the attractiveness of coming in nicely equipped but under 20K. Still, I really liked the Prius and we will be looking at the hybrid Highlander (or whatever it is by then) when it's time to replace the CX-9, even if it's just to drool on one for a little while.

One thing I have to explain is that we could not have made one car work nearly as easily if Dan had to commute every day; it was annoying enough with one car when he just worked in Burlington and didn't need to be in the office every single day.

This past fall, we arranged our schedule so that the girls' activities were mostly clustered around two days each week -- Thursdays and Saturdays. On Thursdays, karate ended at 5:45 (but in reality more like 5:55) and dance began at 6:00; on Saturdays, dance ran from 10:30 until noon, but Penelope's soccer game times varied from week to week. The Activities Dance got complicated a few times, but we never needed to call in a friend for a ride anywhere; usually, one parent-child team would simply sit around and wait.

The fact that we are relatively unscheduled homeschooling freaks was helpful, too: the additional stress of shlepping the girls to and from school every day (or fuming over that one carpool member who is never ready on time!) simply wasn't there. The girls still made it to most of their Fun Fridays, most of their rollerskating evenings, and a bunch of other stuff, as well. Plus, we had all of those speech and physical therapy appointments thrown in there this fall.

Would we do it again if we needed to? Without a doubt. Nobody ever complained (including me and Dan). We paid the CX-9 off two years early. Penelope and Emma got to observe (and sometimes help) Dan and I grapple with some pretty complex scheduling issues. We always managed to find a solution that got everyone where they needed to go.

Would we *want* to do it again? Honestly? I enjoyed it most of the time. We made a responsible decision that was difficult to live with at times, but we had a little extra time together several times a week and we came out of the whole adventure a little more confident in our ability to think outside the box.

Friday, February 4, 2011

Almost impercebtible . . .

So this evening, while Penelope & Emma were blowing out the candles on their birthday cake, Emma's hair caught on fire. Talk about surreal! I was manning the light switch & the beagle, Dan was on the living-room floor, across the coffee table from the girls. From my position, I could tell that Emma's hair was going to catch about an instant before it did. Instinctively, Emma looked at her dad, and carefully backed away from the candles just as Dan was telling her to carefully back away from the candles. Then Dan reached over and pinched the flame out.

Done. Over. Crisis averted. Both girls pulled their hair back and finished the candle-extinguishing ritual. Cake was had by all (including the beagle).

Granted, Emma needed a shampoo and deep-conditioning treatment, and will probably get a haircut on Sunday -- but once again, she has shown a natural instinct to not freak out when she is in the midst of a dangerous situation. The first happened a few years ago, when their a/c unit fell out of the window they were trying to open. Instead of trying to grab the unit & keep it in place, Emma actually leapt backwards, away from the window.

Not that Penelope is any less emergency-savvy -- after all, she did slice her pinky finger open (she was aiming for an apple core) -- but I'm not cataloging, here. Just sharing the amazement I always experience whenever my kids do something beyond their years. I shouldn't (be amazed), but I can't help it. I'm not sure I would have had the same instincts, at eight. I'm grateful that my daughters do.