Back at the Hospital

I know I've been a crappy blogger lately, and I'll try to fill you in on all kinds of goings on, but I wanted to go ahead and tell you what happened this week with the little Boo.  The Big Sister Boo, that is.  The formatting is weird because I'm copying and pasting from another webpage, but I'm sure you'll manage.  :)  I'll let you know what the docs decide to do next week.  (And briefly: me and baby boy (definitely a boy) are doing fine and go back to the doc this week.  So far, so good there!)

[Background: Becca has had 2 other seizures in her life. One was clearly hypoglycemic-related (blood sugar was 45 at the time), and the other was related to an illness, though not necessarily febrile, as by the time the ambulance arrived (I was driving down the interstate at the time - awesome), she didn't have a fever. That time, they kept her overnight, gave her antibiotics for the underlying illness (which we had been at the doc for that afternoon), and sent us home with a med in case she seized again. That was over a year ago and probably related to a tick-borne illness.]

Becca came home from school at noon on Thursday (normal time) and told the babysitter that her tummy hurt and she wanted to lie down. She felt feverish, so the babysitter gave her Tylenol (I told her not to bother with a temp b/c I trusted her judgement that she was feverish but not crazy hot), and they had a lazy afternoon sleeping and watching tv. 

I came home at 6:30, and she ran to the door, jumped up and down, etc to greet me. So she definitely had some energy. She still felt warm, but I planned on giving her Tylenol at bedtime (just an hour later). She still wasn't crazy hot or anything.

So by 7:30, I'm getting her bedtime stuff together while she's watching baby videos of herself (so cute). I'm assembling her feeding tube stuff in the kitchen and hear her making some whimpering-type noises from the couch. I check it out; she's seizing. I get her rectal Diastat kit prepped; we're supposed to give it to her if a seizure lasts longer than 5 minutes. It lasts for at least 4 minutes (assuming it wasn't going on TOO much longer before I noticed), and then she stopped shaking but was still out of it and not really responding for another few minutes. After about 15 minutes, she's responsive, but kind of drunk and -- this was the scary part -- unable to talk. She would answer questions by nodding or shaking her head, but couldn't get words out. If you've even seen someone who has had a stroke trying to talk, that is what it looked like - sticking her tongue out a lot, trying to form words with her mouth, but not being able to do so -- or even get any sounds out. Then she vomited - yellow, bilous-looking stuff. I took her temp after the seizure, and it was 104.3. Blood sugar was 173. Breathing was fine, didn't appear to desat at all.

The on-call ped said that she "absolutely needed to come in and be seen," so I got our stuff together (sad how quickly I can pack a hospital bag for me and her these days  ) and waited for DH to get home (5 minutes away). If John hadn't been close, the ped was going to have us call an ambulance so that I could watch her during the ride. 

So we drive 40 minutes to the kids' hospital, are immediately triaged (never given Tylenol because at that point she wasn't even feverish - at all). She started talking (slowly) on the ride in, which made me feel better. In fact, her first verbal response was her Simba "ROAR" when I prompted her with the line from "I Just Can't Wait to Be King." Pretty adorable. So - we go through triage, and they send us to the waiting room. For 3 hours. By the point, she's pretty much herself, though still her sick self, and she pretty much laid in a chair and slept. She's 3 hours behind on her tube feeds (not having had anything since lunchtime), so I start bugging the nurses to get us back to a room so we can start feeding her, or we are going to be looking at a hypoglycemic seizure on top of the first one. We even considered leaving because I felt like what she needed most was to sleep and get her feeds, but I was afraid insurance wouldn't pay if we left without being discharged.

Finally, we get back to an ER room. The nurse checks her out; vitals are fine. After about an hour, we see a resident. All is well. I'm lying on the cot with her, and John is miserable in a crappy chair. After we had been in the room for 3 hours - now it's 3 am - we still don't have her hooked up to feeds b/c the nurse needs the docs to order it, and we haven't even laid eyes on an attending yet. I mean, I'm glad we weren't in the trauma room keeping them all busy, but, really, 6 hours later, I would have thought an attending would have at least heard about us. So I go out to the nurses' station to remind them that we are here, and one of the nurses is quite surprised to hear that we've been waiting in a room for 3 hours. Yes, and 6 total, thank you. And at this point, John is "sleeping" on a sheet on the emergency room floor. Ew.

After that, things start moving; we see the attending, he orders a strep test. I remind them about tube feeds, and that *eventually* gets started as well. Becca was a super champ, of course, even "roaring" again so that the nurse could perform the strep test. The attending also wants us to get a urine sample. Right. Get the not-potty-trained 3-year-old away from home to pee in a cup. We give it a couple of tries, but give up, not wanting to traumatize her to the whole peeing on the potty thing, which is *finally* kind of getting the hang of. We ask if they have to have it (the only other option is to cath her - ugh), and the docs says that basically, he wasn't looking for anything in particular, so never mind. Phew. Feeding pump alarms every 2 minutes (literally), so John and I take turns sitting by it and restarting it every time. The nurse doesn't know how to use it - we had to teach her. (But really, she was wonderful...we have just dealt with a lot more pumps than she has.) Strep test comes back negative. Docs don't know what else to do; nurse suggests they send us home. Great idea. So we are out the door about 5 am (after arriving at 9 pm), with a *suggestion* to call neurology to set up an EEG and consult. 

We drive through Krispy Kreme (which just happened to open early on Friday mornings - thank you, Jesus  ) and get home about 6. We all sleep until 11 and proceed through a normal day and weekend, albeit on the lazy side. By the time we got home, she was COMPLETELY FINE. That's the oddest part to me, and kind of nerve-wracking. I mean, if the seizure were really related to the (brief) illness/fever, why/how could she bounce back so quickly? I mean, the fever was COMPLETELY gone by the time we got to the hospital, and she was herself the next day, even without sleeping much. So that concerns me that there might be some underlying seizure disorder that we are just now seeing. The good news is, though, that if there is an ongoing condition, it appears to be mild, since we've only seen 1 seizure a year (though who knows if others have happened during the night, etc - but still, if so, she bounced back quickly). I doubt that she'd have to go on full-throttle seizure meds, but it's another thing to watch for, I guess. 

My Crazy-Awesome Kid

I'm been really discouraged lately, thinking about how much "catching up" Becca still has to do, even though we've hit the magic age by which all symptoms of prematurity should have magically disappeared. (That's the age of 3, mind you, and the general thinking is that preemies, if they are going to catch up developmentally, do it by age 2, though we give micropreemies like Becca another year because of the additional challenges they face.) I won't get into all the reasons I've been discouraged, but they are there, they are real, and I've got to own up to it. But then this evening, I was typing up a quick summary of the issues Becca and I faced in my pregnancy and the rocky road she had in the NICU, and I'm once again reminded that everything she does is a miracle. (And someday I really am going to write that post about my theological understanding of miracles, so for now please don't overanalyze my use of the term.) The lists are written for other preemie mamas, so some of you may not understand all of the terms, but don't worry about that. Here they are:

Pregnancy: 27.6 weeks, severe IUGR (370 grams), fatal prognosis @ 17 weeks, 1 week hospital bedrest, emergency c-section. Prematurity due to pre-e, HELLP, IUGR, Fetal Distress (including severe heart decelerations) and Reversed Blood Flow. In other words, my pregnancy was a clusterf&*^. But I have a cute kid now!

Becca: 27.6 weeks (I tend to think of her as a 28-weeker) - very severe IUGR, anemia, mild CLD, osteopenia (multiple fractures), jaundice (& hyperbilirubemia), transfusions (26), multiple infections, pulmonary hypertension, hypothyroidism, septo-optic dysplaysia, silent aspiration, double inguinal hernias (repaired surgically), feeding difficulties, FTT, g-tube (at age 2), multiple failed hearing tests (functionally deaf for 8 months, corrected with tubes), adenoids out, plagiocephaly and helmet therapy, severe sensory processing disorder resulting in feeding problems and g-tube dependence, gross and fine motor delays, growth hormone injections. 123 day NICU stay, 20 days inpatient since NICU discharge.


So, yeah, if you didn't know Becca and just read this list, there's no way that you'd guess that she took 4 ballet classes this week AND peed in the potty twice. That's my daughter.

Tinkle, Tinkle

Usually when I'm around Becca and hear a "tinkle" sound, it's her asking me to sing "Twinkle, Twinkle Little Star," which was the first song she ever sang along to and probably still her favorite song.  But on Monday, right before she went down for her nap in her big girl bed, I heard a different "tinkle" from Becca.  Yeah, that's right...wait for it...

Becca went pee-pee in the potty!

I was changing her diaper and asked her if she wanted to sit on the potty.  She said no, but after a few seconds, she said, "Pee-pee potty!"  After confirming that she did, indeed want to sit on the potty, I whisked her naked butt into the bathroom and sat her down on her squishy Elmo potty seat.  We then started to read our special potty-only Elmo books (a bribe to get her to actually spend a couple of minutes on the toilet), and halfway through Elmo's First Book of Airplanes and Rockets, I heard a little "tinkle tinkle tinkle"!  It wasn't very much; it might have even been only one "tinkle," but I was all over it!  I think it/I actually scared her a little bit.  She looked really surprised but then when I told her she actually got to USE TOILET PAPER (her favorite toy ever) to wipe, she got excited.  The rest of the routine is old hat to her because she does it every time she sits on the toilet: hop down (with Mommy's help - the toilet is very large when you are very wee), flush, watch the water go around and around (and talk about it), climb on the Elmo stool and let mom pick you up to "wass hans."  Except this time we had a massive potty dance in the middle of it, waving our arms, twirling in circles, all with her little naked booty poking out from under her Elmo shirt.  (You could say we're still a little obsessed with the furry red guy.)

I was so proud of her!  I don't expect her to be straight into panties or anything, but, y'all this is huge!  It's huge for any kid, but it's especially huge for one with gross motor delays and hyposensitivity issues.  Because she's under-responsive to sensory stimulation, it's hard for her to recognize the feeling that she's got to "go."  I mean, it's hard for her to actually feel that feeling.  But I think she did this time!  I know part of her wanting to sit on the potty was simply to put off her nap (she always wants to sit on the potty before bedtime!), but the diaper I had just taken off of her was really dry, and when she got to the potty, she started "tooting" (and told me every time she did) and, of course, peed, so I think she might actually be connecting the toilet with the sensation and the appropriate response to it.  She's associated the toilet with pee and pooh for quite sometime now - at least as the place where Mommy and Daddy pee and pooh.  But for her to realize that she can make things happen there, too, is awesome!

I'm not tossing out the diapers tonight, but I might just wait a little while before I decide just how jumbo a pack I should buy this week!

Potty Training, Take 1

Sooooo...we attempted potty-training boot camp. Okay, we kind of attempted it. Becca was good about telling us when she was peeing or when she had peed, but not when she needed to go. I figured that would take a little time to learn. After one afternoon/evening and one morning, though, Becca was no longer liking sitting on the potty, so we decided that it was time to back off and take a different approach. When Becca decides she doesn't want to do something, it's best not to make it an issue; she redefines stubborn (which, as I've said before, saved her life, but, wow, it can make things difficult!). I think I'm going to try to make the potty fun again by giving her an M&M (great reward for her!) every time she sits on it, and then have some "panty time" while we are home each day. Depending on how that goes, we may try boot camp again in a month or two. I still think that when's she ready, she'll really take to the all-or-nothing approach; she's an all-or-nothing kind of kid. Who knows. We did learn a few lessons this weekend:

• Consistency is key. Or at least, not being consistent isn't going to get us anywhere. I definitely found myself slacking. I will really need to get a good night's sleep before our next boot camp!
• The girl can control her body! For example, she went 3 full hours without peeing on the first day. And she didn't poop for nearly 3 days (one day before boot camp), I think because she didn't want to poop in her underwear. (She normally poops everyday, and, trust me, she wasn't clogged up. :) )
• Queen-size fitted sheets make great slipcovers. Due to my husband's stroke of genius 4 years ago in the Rooms to Go outlet (outside Atlanta - it's amazing!), our den furniture is leather, which makes for easy cleaning, but still...urine on furniture is not ideal. Next time, I think I'll dig out the flannel sheets for even better coverage.
• Contrary to my assumption, Becca doesn't care if her panties are wet. Oh well.

We gave it a try; we'll keep working on it; and I'll keep you posted!

To Pee or Not To Pee (in the Potty)?

Today, I finally found them:

They are apparently the last pack of 2T Elmo panties in the greater Nashville metropolitan area. Okay, maybe not, but I did have to look in 7 different stores to find them, and they were the only Elmo panties (of any size) at Kohl's. Nana Dana found another pack in Ohio, and I've backed up the Elmo supply (our a-game) with a pack of Disney princess panties. (Of course, the 2T's are huge on Becca, but they do seem to stay up on her, which is more than I can say for many of her pants.)

We've got:

an Elmo potty seat,

a Dora potty seat,

a royal potty,

and a Baby Bjorn "Little Potty,"

aka "Bear Potty," and the only one of the bunch that really fits her.

(It's intended for infant potty training and/or travel use.)

And since no trip to the potty is complete without a little reading material, we've got:

(all for sale at www.ittybittybooks.info, of course!), and

because every little fairy needs some potty sound effects.

SuperMom's got some reading material as well:

And, most importantly, I've got a two-year-old daughter who insists on doing everything herself, who takes off her diaper, who knows how to hand Mommy paper and flush the toilet, who can tell me when she is going "pee-pee" and loves to sign "potty" when she's pooping, who can reliably walk to the potty by herself, who can (when she is so inclined!) follow 2-step directions, and who can't stand being wet or dirty. (Hey, we might as well let this sensory processing disorder work for us for a change, right?)

My working plan is to do the three-day potty training boot camp: no diapers, no training pants, no pants at all for three days. Potties scattered throughout the house (hence the multitude of potties). Every 15 minutes without an accident earns an M&M or 2, with trips to the potty at least every 30 minutes. Pee-pee or poop in the potties earns massive celebration and as many M&M's as her tiny hand will hold. Diapers at night, Pull-Ups at nap? Since we don't actually ever get 3 days at home in a row (due to therapy, etc.), we'll have to modify some, but my gut tells me that my headstrong, all-or-nothing kiddo will work best with this kind of method. The questions that remain are 1) whether or not Becca is truly ready (she is on the young side still); and 2) whether or not I can stick to my guns. SuperDad is game for whatever, assuming he still gets to go to work and all. Tentative go-time is next week.

So, what do you think? Am I insane? Can we do this? What potty-training practices do you suggest? What tips or tricks do you have?