Monday, May 14, 2012

March for Babies 2012

Together, we've raised over $4500!  Wohoo!
Photo Card
View the entire collection of cards.

Monday, May 7, 2012

Seizure Update

Becca has continued to be...totally fine.  I just talked to her pediatrician, and he wants to do the EEG before we call neurology.  If the EEG comes back normal, he's ready to chalk it up to febrile seizures and manage from there.  (If that's what it is, there's not much managing to be done - just watch her fevers, treat with Tylenol, and be prepared to handle a few seizures here and there.)  If the EEG shows some areas of abnormal electrical activity and connectivity, we'll see neuro to see what they think.  So that's that.  Don't know when it will be scheduled; I'll let you know.

Saturday, May 5, 2012

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. 

Wednesday, April 4, 2012

Absolute Last Call on Shirts!

Here's the final design - don't you love it?  Shirts are available with a donation of $15, made payable directly to me, and I've got to have your order by 5 p.m. CDT TODAY.  I'm compiling and sending the order in tonight!  Leave a comment with your size(s) and an e-mail address, and I'll get back to you!  Thanks!

Friday, March 30, 2012

Bits and Pieces

I feel like there is a lot to update you on, but my mind is not at all organized at the moment...so you'll get bits and pieces.

First off, I am now 17 weeks and 4 days.  17 was a bad, bad week for us in Becca's pregnancy.   In fact, it's the week that they told us she was going to die.  So even though we weren't scheduled for a visit this week, I called the doctor to see if we could come in and get a glimpse to make sure everything looks good.  Fabulous doctor that he is, he worked me in, and we saw him on Wednesday. 

I am beyond thrilled to say that this week 17 is going much, much better than our last one.  The baby is measuring right on target, though the head is a little bigger than the legs (which just makes the baby a Hill - have you met my short genius of a husband?).  At this point, Becca was already 2 and a 1/2 weeks behind.  There was a 4 cm fluid pocket already; when we went for our amnio with Becca in week 18, they couldn't even find a 1 cm pocket and almost weren't able to do the amnio.  Dr. Sizemore said that they could amnio this fluid all day long; I told him that I'd prefer that he not.  The baby was moving - dancing, really, which was adorable.  And we think we saw some bits and pieces...

...as in, little boy bits and pieces!  It's still pretty difficult to tell on the office's super basic ultrasound machine, but we're pretty sure we saw his little penis, and when he started grabbing at it, we decided it was definitely acting male...already sticking his hand down his figurative pants.  But - we're not painting the nursery blue yet or anything (actually, we're not painting the nursery at all because when we moved in and painted we went with a gender-neutral green, smart kids that we are), but the doc is 85% sure it's a boy.  We ought to know for sure at our full anatomy scan (at the high risk doc with the better machine) the Tuesday after Easter. 

So that's that.  I feel so so so much better after this appointment.  Oddly, it's nice to be where things started to go wrong.  I had thought that my anxiety would only increase as we got further along, and I'm sure it will some, but it feels great to be at this point and be reassured that what happened last time is not happening this time.  I'm still at high-risk for complications, and there is still a very good chance that I will develop pre-eclampsia, but whatever happens now, I know we're not experiencing a total repeat of last time with the double whammy of super-severe IUGR AND severe, early-onset pre-eclampsia.  Again, the kiddo could stop growing at any time, and my blood pressure could shoot up, particularly as pre-e is an unpredictable disease, but we are ahead of where we were last time.  Phew.  In CPE terms, I think it's helping me differentiate this pregnancy from my first one.  I really am starting to believe that things might be different this time.  Like I said, it feels good. 

[Sidenote: as I talk about my first pregnancy, I want to be clear that I don't regret a minute of it.  Of course I would have chosen for it to go differently, but in the end, we got the best kid in the world, and I love her just the way she is.  I would do it all over again in a second to have her.  Or to have this itty bitty boy.  But we're open to an easier ride for everyone this time.]

Okay, I got so busy writing about the little boy booger that I forget what the other updates need to be...so...um...don't forget to donate to our March for Babies team and/or order your t-shirts (I'm sending in our order on Monday!)...and if you want to buy some Usborne books AND save some babies at the same time, shop at www.myubam.com/HOS216155.  I'm giving my entire commission on purchases made through this link to our March for Babies team.  And I haven't forgotten about the second Disney post.  It will come.  Eventually.  :)

Oh, and some adorable Becca sayings as of late:
  • I'm da wine weader!  (while running to get in front of everybody)
  • Her name for the baby: Kolkai Booger
  • I'm Madewine!  I'm Madewine!  I'm tall!
  • Actuawawy... (translation: actually)
  • I want to go on adbentures!  Yet's go on [pauses while she counts her fingers and raises them] five adbentures!  (Adventures = errands or anything else we can come up with to do away from home or church)
  • Awl da something or other (As in, who was your favorite character at Disney?  "Awl da charawcters!"  Who do you want to invite to your birthday party?  "Awl my fwiends!"
  • I will give you a kiss to feel you better, Mommy.  (and)  I'm sorry you're sick, Mommy.  (and) I'm gwad you're better, Mommy. 
Okay, that's all the randomness I can reign in at the moment.

Monday, March 26, 2012

Disney Pictures!

I keep saying that I'm going to post pictures of our Disney World trip...so I'm finally going to live up to my word.  Only took, what, 3 weeks?  First, a few thoughts on planning a Disney vacation with a little one:
  • Free Dining Week - Hell to the yes.  The week we went (and a few others during the slow month of February), if you stayed at a Disney resort, you got the Disney Dining Plan for free.  Staying at a moderate resort, we got one table-service meal, one quick-service (counter) meal and one snack a day each.  That adds up to a lot of food, especially when one of your group is primarily g-tube fed.  This is by far the best deal Disney offers, which is why they do it in their slow times.  This is such a good deal that I figure we'll do it at least one more time, pulling the kiddos out of school, even though the Boo will likely be in elementary school the next time we go.  We also decided that whenever we go outside of free dining week, we'll bit the bullet and buy the dining plan ahead of time so that we aren't stressing out every time we eat, 'cause it ain't cheap.  Most of the food we had was delicious, but, yeah, you pay for.  (Unless you don't.  Like we didn't.)
  • Everybody told us we should stay "on property," meaning at a Disney resort, and I'm so glad we did.  We went back to our hotel most every day for naps for Becca and me (some days more me than Becca!), and it was so much easier than making a commute that locked us into our plans for the day.  And with the dining deal, it was probably even cheaper that way.  We stayed at Coronado Springs, which was fine, but next time we'll probably stay at a different moderate resort - not that there was anything wrong with it, and I'd recommend it, but there are so many fun-looking ones that it would be nice to try another one.  When I'm rich, we'll stay at the Polynesian.  It was really cool.
  • The "park hopper" option on the tickets is a must.  It's pricier than you would think, but it was definitely worth it to have maximum flexibility.  We often spent half a day at one park, went to the hotel for a break, and spent the evening in another park.  It also enabled us to see most of the parks in the day and at night, which is cool because they are all different at night. 
  • Character meals were a BIG hit with Becca.  That's where most of the pictures below were taken.  Becca LOVES anything in character, so it was truly magical for her to get to chat with the princesses, hug on Mickey, and counsel Eeyore ("Eeyore, don't be sad!  It's okay!).  Since we were on the dining plan, we did several character meals - otherwise, we probably would have scaled back since they seem to be more expensive than the regular table-service meals.  It was so nice to see the characters this way instead of waiting in long lines to see everyone.  We still waited for a few characters, but all of our must-see's were covered with our meals.  Some of our favorites included breakfast at O'Hana (with Lilo, Stitch, Pluto and Mickey) and the princess lunch at Norway in Epcot.  (The other princess meal option is in Cinderella's castle, which would have been cool, but it counted as TWO meals for each person - no, thank you.  We got lots of time with Belle, Cinderella, Snow White, Ariel and Sleeping Beauty at the Epcot one.)
  • We made sure to make time for swimming.  Our hotel had a little pool near each building and one big pool in the center of the resort.  I had read something about how when you ask kids what their favorite part of the Disney vacation was, the majority of kids say swimming at the hotel.  I know that can drive parents crazy (hello, we can swim at the rec center 2 miles from our house!), but Becca loves the water, too, so we made sure to swim 3 times or so.  The pools are heated, but even so, in the first week of March we had to watch the weather to schedule our trips to the pool.  Once it was so cold that Becca's lips turned blue, but she still refused to get out.  (We went all responsible parent on her and made her get out anyway.)
  • One of the beautiful things about going to Disney with a kid Becca's age (3.5) is that if we didn't tell her it was there, she didn't know - so if we knew we weren't going to do something (ride the Teacups, for instance - I wasn't going near them nauseous, and John's no fan either), she didn't know what she was missing.  That mindset also freed us up to take it slowly, since we didn't have to do everything. 
  • Don't believe people who tell you to skip Epcot with little kids.  Of course, Becca is our little scientist, so it was no surprise that she'd be into things like Innoventions and the Imagination Lab at the end of Figment, but Epcot turned out to be her favorite park.  We rode Nemo 3 times, Figment 3 times and Spaceship Earth (in the big ball) 3 times.  She loved Fantasy Land, of course (with Peter Pan, Winnie the Pooh, and It's a Small World), but she picked Epcot when she got to decide where we were going. 
  • We downloaded (and actually paid for) an app from touringplans.com - it was awesome.  It gave us real-time wait-times for every attraction in the parks.  That made it really easy for us to avoid disappointment - instead of telling Becca we were going to such and such ride, getting there and finding that the line was too long, we were able to check the wait times and give her options.  (And yeah, she definitely didn't understand the concept of going to a ride to check the wait time - if we walked to it, we had to ride it). 
Okay, enough words.  Here's a Disney photobomb!


















Okay, this post is getting ridiculously huge, and I'm only halfway through the pictures, so I'll save the rest for another post. 

Sunday, March 25, 2012

2012 March for Babies T-shirts!

Are you ready for it?  Really?  Our dear friend "Miss Sanelle" (also known as Shanelle by folks whose language skills are more developed) has been hard at work on a t-shirt design to go with our 2012 March for Babies theme...and in honor of our family's dream-come-true trip to Disney in the middle of March for Babies season, here is a draft of the design!
 The shirts will be red with 2 colors printed - probably black and white (the castle will likely be white instead of blue).  We're making a few final changes to Becca's outfit, etc. but you get the gist of the idea. The back of the shirts will be printed with a quote from Walt Disney ("It's kind of fun to do the impossible!") and the names of our team sponsors - those small businesses that have donated $150+ - let me know if you want to get in on that!  We are taking orders for the shirts now - if you'd like one (or one for each member of your family :) ), leave a comment or e-mail me at MacaroniAndSpeas(a)gmail.com.  The cost for each shirt (available in 2T through XXL - or probably bigger if you need it) is a $15 suggested donation - but you'll need to pay me directly, and about $9 of each shirt's donation will be considered tax-deductible.  (I'll send you a receipt for that portion.)  You can PayPal me the money, marking it as a personal gift, but I'll have to give you our PayPal e-mail address - or you can send a check.  If you need our address, or even if you don't (so that I can track everything), please leave your e-mail address in your comment, along with the number and sizes of the shirts that you'll need.  I'm happy to mail them for the actual shipping cost - last year, it ended up costing about $2.50 per shirt.  Okay, I think that gets us through all the details.  So let me know how many you're in for! 

Oh, and so that we can get the shirts printed and back to us by the walk, I need all your orders in by NEXT SUNDAY, APRIL 1ST. 

I know that's only a week, but you guys are smart people who have your acts together, right?  I don't have to have received your check by then, but I do need the details of your order.  And if you order a shirt and don't pay, I will smite you.  Okay, not really.  But we'll have to eat the cost, and I'd much rather use that money to eat, oh, real food.  Please let me know if you have any questions!  Thanks!

Of course, if you don't care for a t-shirt, we are still taking direct donations at www.marchforbabies.org/BeccaHill !

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