Panty Problems

Piper’s started this as-soon-as-my-diaper-comes-off-I-can-blast-off-like-a-rocket thing lately. 

Which has ultimately led to a whole bunch of diaper-free time.  I’ll admit that it’s probably hereditary, but I won’t tell you through whom.  I’ll also say that I the guilty party HAS outgrown it.  Promise.

Piper blasted-off this afternoon, so I just let her wander around the house bottomless.  I sat on the couch and checked my email And like a good mom, I kept a very close eye on her.  Looked up and saw this:

Apparently she wanted a new  diaper on.  She was going through our diaper drawer, pulling them out- one by one. 

I can honestly say she’s never ASKED for a diaper to be on.  She’s asked for her pants changed, but ultimately only to take them off. 

It’s hard to believe that a child with a wardrobe the size of hers, Piper prefers to play in the nude.  Go figure.

It’s gonna be a LONG 4 weeks.

Piper’s love in life (for that minute, anyway) is her bath.  I’ve never seen a kid so in love with the water. 

Unfortunately, she has four weeks before she’s allowed to “soak” her incision.  That’s a whole lotta baths that I have to keep her from laying down in the water.  They said that she can splash and it won’t matter, but laying down in the water isn’t an option…

I finally got the nerve up and gave her a bath on Sunday.  I filled the tub and quickly realized that there was NO way I was going to be able to keep her upright if I put her in there.

My solution?

Tub bath in the tub.  The Tupperware bucket is bigger than the one we put her in in the hospital, but not so big that she can lay down.  Not quite, anyway- she can still fold over with little effort.  But at least it kept my heart attacks down by a couple. 

She still had all her toys outside of the bucket- but I don’t think I’m going to be filling the tub AND the little tub for each bath- I try to be ecologically conscious.  Although with a face this cute, it’s awfully difficult.    

Only problem is that she figured out she could stand up in the bucket, too.  So it didn’t keep me from all the possible heart attack situations. 

This is gonna be one little squirt who’ll be very glad to get the all-clear.  At least for the bath part.  And this mama is going to be very glad to get the all clear for the picking-up-under-the-arms part.  Although we are getting rather good at that…

A Piper’s Progress

So before all of the drama from the past few weeks hit, I was planning on doing an update post, for my own memory, of what Piper’s doing right now.  We’re about half way through to our next IFSP, so I like to keep a tab on our goals to make sure I’m not missing anything.  It amazes me the amount of things that Piper’s learned since June!

Gross Motor:

Piper’s cruising.  Everywhere.  All. The. Time.  She can pull-up onto anything, even walls, and go between surfaces.  She’ll even go across a surface with one hand.  She’s also pulling up to something, like the laundry basket, and pushing off into a stand more and more often.  The problem is that she’s only doing it when she isn’t aware she’s doing it- back to the confidence thing again. 

Not a great picture, but she was going back and forth between the ottoman and the table.  We were proud of her for the distance in between and the different textures- one was hard and smooth, the other soft and squishy! 

She’s been exclusively hands-and-knees crawling for well over a month now (we weren’t convinced she was going to truly crawl because her creeping was so efficient; we hadn’t pushed it, and just skipped to cruising.  She decided to do it on her own!).  Except it’s not really hands and knees- it’s more like hands-knee-foot crawling.  Everyone laughs at her- and we’re all convinced it’s because she can get more propulsion with the foot up than if she were just on her knees.  She’s all about speed. 

Cute butt short of her foot/knee crawling.  Goofy kid…

And because she’s all about speed?  I’m certain that her coordination is better when she’s running (yes, running) than when she’s walking.  Before we went into the hospital, I was fairly convinced we were going to get her walking within a matter of weeks.  But now that we can’t practice it in the typical ways (we can’t catch her under her arms when she falls for two months), I’m not sure how we’re going to encourage her to do it, safely.  Hoping that our therapists can give us some pointers. 

We have been able to get her to take TWO steps, unassisted, away from the wall.  Of course, having some kind of food motivation helps exponentially.  No one can say that our kid doesn’t get enough to eat, lol.

Language:

Piper’s up to somewhere over 20 signs now.  All of which she’ll do unprovoked.  It’s AMAZING to have the ability to communicate with her this way.  It’s also been nice to use at places like church, because I can sign something to her without saying anything, and she’ll understand.  I’ve tried fervently all day today to get a picture of her signing something; apparently stage fright can occur at an early age…

She has several two word sentences that she’ll sign, and uses them in different ways.  Observations like “doggy eat” when she’s watching them eating (or when she’s fed them something off her tray, which she knows she’s not supposed to do), descriptions like “Mommy silly”, or requests like “Mommy, I’m sleepy” occur many times a day.  Sometimes she’ll be squacking for something to eat, starting with signing “Eat, Mommy!”, move on to “Eat, Daddy!”, and even, if she’s really desperate “Eat, Doggy!”, trying to convince SOMEONE into giving her something.  Sometimes it morphs into a “Eat, MommyDaddyDoggy” fiasco, in which case I know she’s gotten to the end of her rope. 

She’s made up several signs on her own, which I don’t put toward her count until I can uncover what it is and verify that she uses it for that one thing.  The funniest has been a progression of degrees of “like”- there’s one sign for just plain ol’ like, one for really like, and one for really REALLY like.  It cracks me up.  I’m also fairly certain that she’s gotten a sign for Piper; I just realized that’s what she was saying, so now I’m on the lookout to verify that’s what she’s meaning.  There are at least a half dozen more that I’m clueless as to what they mean… 

She’s also getting REALLY good at identifying pictures in books.  She will point to an object on request, even if there are lots of pictures on the same page.  We’re working on increasing her vocabulary and the number of different images that she will recognize.  Most anything that she has real-world experience with, she’ll point out (flowers, balls, dogs, kids, babies, cars, shoes, clothes, bubbles, etc), and we’re starting on things that are a little more abstract (fish, bumble bees (mostly because she’s really interested in them), farm animals, etc). 

Her receptive language is probably the area she excels in the most.  It catches me off guard on occasion when she understands something that I didn’t intend for her to.  I’ve changed my perception from “just talk to her all the time because it’s good for her” to “she understands unless she shows you otherwise”.  It’s pretty fun to watch her follow directions in the presence of someone who’s not prepared for her to do so, like the doctors.  When we were in the genetics clinic, Piper was crawling all over the floor, and decided to stand up on the foot rest of the exam table.  I told her that it wasn’t safe- she turned around, looked at me, smiled, got down, and didn’t do it again.  The doctor was flabbergasted.  Oh what fun!!!

Fine motor:

Piper’s really had little desire to practice her fine motor skills lately.  It’s been a little slow-going.  I refuse to make her sit and play those games for longer than a few minutes if she’s not in the mood, so she doesn’t get as much practice as she does with her gross motor.  However, she still does pretty well for herself.  She can do the piggy bank, she’ll stack rings, and put things into boxes or nested cups.  However, that being said, each of those requires you to actually LOOK at the object first.  If she’s really not in the mood, she’ll have the coin in her hand, for example, and be looking at ME, blindly putting the coin toward the darn pig.  Somehow she hopes that it’ll be good enough, or something.  Goofy.

Growth:

Piper’s had a little, tiny bit of a growth spurt the last month or so.  She’s now barely above the 5% on the Ds chart for weight, and still just below for length.  She weighed in at a whopping 14 1/2 pounds for surgery last week.  Sometimes I get questions about her being so little.  Truth be told, no one really knows why she’s so tiny.  The kid eats, a lot- even the nurses in the hospital last week were shocked when they watched her.  They’ve run every test, repeatedly, to make sure that we’re not missing something.  Frankly, she’s not significantly smaller than I was at the same age; we’re all convinced that she’s just little, and it’s just who she is.  Which is fine with us!  What she lacks in size, she makes up for in spunk! 

The downside to this whole thing is that I’ve planned a 6-12 month sized wardrobe for her this winter.  Aaaand it’s not gonna work.  She’s still wearing her 3 month clothes for this summer.  Anything that’s two-pieced needs to be a 3-month (even though she’s considerably over the size limit on the tag), and if it’s one-pieced, it needs to be 6-month.  Not that she’s lacking in attire, don’t get me wrong- just some of the cuuute clothes that I had stocked up for this season will have to wait until next year…  Oh well!!!  At least we get our money’s worth…

Reunited

…and it feels so good!

Luke’s parents took the dogs for part of the time Piper was in the hospital.  It was really nice to not have them to worry about, too, and allowed Luke to spend more time at the hospital with us.  He picked them up today- Piper was so happy to have her doggies back in her life!

T-R-O-U-B-L-E

Oh, Lordy, have I had my hands full today!

Piper was SO excited to wake up in her own bed this morning (after sleeping for almost 12 hours straight, mind you).  And she never. stopped. moving.  All day long!

I was getting her breakfast ready, turned around, couldn’t find her.  Walked down the hallway to find this:

She was pulling all the clean clothes out and throwing them across the floor.  Thanks for the help.

I got her in her high chair and fed her breakfast.  She wasn’t a huge fan of cereal this morning, so only ate about half of it.  I got up to get a washrag to clean off her face, and as soon as I turned my back, she pulled the glass bowl off the table.  It shattered all over the floor.  And it was half full of cereal still.  So I left her in her seat (which she repeatedly informed me she was not enjoying), picked up the big pieces of glass by hand, mopped up the cereal, and then vacuumed the area to make sure all the shards were up.  Then put her back on the floor.

I finished cleaning up, turned around and saw this:

She was going between her different spots of toys and pulling everything down or out of where they were stored.  She played with each one for a second, put it down, and got another.  It was like she was saying “Oh, my toys!  How I missed you!!!”

Once she got tired of that (for the time being), she found the coat closet.  And all the gardening gloves and shoes that are kept there.

About this time, I was exhausted, and decided it was time for a nap.  She, however, not so politely disagreed.  After the fight to get her nasal cannula on (lemme tell ya how much fun this is…), I tried for a good while to get her to go to sleep.  I even tried putting her in my bed.  No go.  Off went the cannula, and she was off tearing my house apart.  Again.

We ate some lunch, and she played some more.  FINALLY around 1:30, she got tired enough for me to get her down for a nap (after another fight with the cannula). 

She got up a couple hours later, and I decided that, in order to keep my sanity, we’d go for a walk around the neighborhood.  She screamed in excitement.  I put her on the grass in the front yard so that I could get her stroller out and set up.  She crawled across the cement, on her hands and knees, to come get me.  Silly girl.  Good thing she picks up her knees when she crawls, and doesn’t scrape them too much. 

She talked to the bunnies we saw on the way, waved at dogs, and watched intently as she was initiated back into the real world again. 

By the end, she was really relaxed.  Really relaxed…

Sweet, sweet sleeping baby. 

The best part of being in the hospital…

…IS COMING HOME!!!

Piper decided she’d take herself out, thankyouverymuch.

Last night, I wasn’t sure they were going to let us leave today.  As soon as she fell asleep hard, she started desatting into the mid to low 80’s.  And seemed to stay there for a large portion of the night.  The nurse tried some room air trials several times, but we didn’t get anywhere.

So today during rounds, we talked about our three options.  One was that dropping to the 80’s probably wouldn’t do any harm, so we could just “let it be”.  No one liked this idea, of course, so that one got thrown out the window.  We could stay tonight and see if she continued to desat—our theory is that, due to pain, she’s just not breathing in as deeply as she needs to keep her O2 needs up.  So, then, if that’s the case, as her pain becomes less and less, her oxygen need would diminish.  The third option was to just go home on a little oxygen at night, and come back in a couple weeks for a sleep study.

Seemed like the best idea was just to go home.  To get out the hospital so that she could go home and start healing here.  We figured that she’d probably do the same thing tonight, and we’d end up in the same place tomorrow, anyway.

They couldn’t send us home with a pulse oximeter (“act of congress” is needed, apparently, lol), so we can’t discontinue until we find out what she’s doing overnight, hence the sleep study.  I also overheard that ENT is fairly convinced that she must have obstructive sleep apnea because of the airway issues.  I’m not convinced on this front because this kid is probably the quietest sleeper I’ve ever known.  They said that our ped would be able to write an order to discontinue the O2.  I’ve heard of people using at-home pulse oxes—if any of you have, do you think they’re accurate?  I would bet that my doc would take my word if I kept one on her for a night toward the end of the weekend.

We’re hoping that this is a short-lived period.  My got knows that it’s all related to surgery.  Besides, the four nights before surgery were fine. 

I’m SO not looking forward to a sleep study.  So so so so so NOT. 

Anyway, we’ll cross that bridge when we need.

We go back next Wednesday to take out the stitches on the top and bottom of her incision and the stitch from her drainage tube.  Then we follow-up with the ENT on October 14.  Of course, Piper’s next pediatrician appointment, and rescheduled ophthalmology appointment, are on the 11th.  Looks like October is going to be as eventful as I thought September was going to be. 

Bye-bye, Children’s!  We love you well enough, but we hope to not have this…  close?…  of a relationship for a long time.

We can’t even begin to express our thanks for the amazing outpour of love for our little girl over the past week.  This community is definitely one of the perks of being in The Club.  We love you all!!!

9th Floor Newbie

Sooo, we were transferred up to the 9th floor, the Cardiac Progressive Care Unit, this afternoon.

It all started falling into place when members from Cardiology came down to see her this morning and she was SCREAMING while the nurse flushed her IV.  That in combination with the fact that we (read: she) was up every 40 minutes last night, had an increased heart rate and respiration rate lead them to believe that the pain control down there left something to be desired.

So, now we’re on the top floor of the hospital, with views away from the construction that had been below us.  The nursing care is more intensive than it was downstairs, which we don’t really need, but I do feel more comfortable with their teaching of postop care to us, and their know-how of handling sternum care. 

The plan is to still go home tomorrow, so long as Piper does better tonight than she did last night.  She’s on Oxycodone and Tylenol now, so we’ll see how her system does with those. 

We got another visit from a therapy dog this afternoon- Piper sat on the floor and had so much fun playing with the little bichon.  When they were leaving, she got down on all fours and started to crawl out after them!  We got the nurse in to take off her leads so that she could play a little more freely.  She crawled a little, felt pretty proud of herself (we were proud of her for trying!!!) and decided that it hurt too much to continue.  Everyone has said to just let her regulate herself, and that’s what we’re trying to do.  It’s kind of hard watching her do some things and wondering how badly they hurt.  Or should hurt.  But I guess she’ll tell us, right?

For our Colorado buddies, thought I'd share a picture of what the rooms here look like.  Overall, the experience here has been TONS better than our experience at P/SL in February; don't get me wrong, I wouldn't doubt that we were there at a bad time, or just had a sporadic bad experience.  But still...  90% of the nursing staff has been AWESOME.  Every room has a full wall of windows, which is as nice for me as it is for Piper.  There are play rooms with toys (which we've never gotten to partake in because they were outside the doors to our unit, where she wasn't allowed with no pulse-ox), open areas at the end of the hallways with couches and tables to sit at, and lots of fun pictures on the walls to look at.  The room we're in now is a little smaller than the ones we were in downstairs, but still nothing to bark about.

 

No matter how nice it is here, we still cannot wait to go home!!!