Remembered it this time

I remembered to get the camera cord when I repacked my bags for the hospital, so here are some shots that I've gotten to document Emma's stay at the hospital.



 Hugging on Bun, fast asleep with her mask on



Determined to feel better, Emma slept with a little balled-up fist and dreamt of fighting RSV 

 

Does this look like a sick child to you?

Aside from the obvious RSV, this has been Emma's nemesis - the oxygen saturation lead.  She has acted as though her hand is paralyzed and won't move it at all when the lead is wrapped around her finger.

Emma wasn't going to let a little hospital stay prevent her from doing something new.  She snatched the toothbrush out of my hand and started brushing her own teeth.  I obviously had to finish the job, but we were shocked she was willing to try it on her own, considering that tooth-brushing is on her least-favorite-things list.

 

Emma had a pretty decent day.  Lots of coughing and choking, but a little bit better than Monday.  Our night nurse just came in and told us that she sounds very "junky," which means the gross stuff will sit in her throat all night and result in a very difficult morning for us.  Our most immediate prayer is that tomorrow morning will go smoothly.  Whatever happens in the morning typically dictates how the rest of the day will go.  I will try to post tomorrow night, but I might be asleep by 5 pm.  I apologize in advance if I can't get it together; rest is at a premium these days.

Good, old friends I hate to see again

Before I get any further in this post, let me clarify something from my previous post.  Yes, Emma did take three steps with her right leg, aided by a walker.  She didn't do it without the support of a walker, but she DID IT!

So, on to less exciting....actually downright depressing news.  I am typing this blog from the comfort of a fold-out bed/chair in Emma's room in the Pediatric Intensive Care Unit.  We thought Emma had a cold, as she does every few months.  Today was especially bad for her, and she choked on that nasty mucus, turned blue, and passed out three times this morning with my mom.  Her pediatrican wanted her to come in just to check on her and make sure it wasn't something more serious like RSV.  The whole RSV thing was kind of a side note; she thought Mucinex to thin things out a bit would do the trick.  But we went in anyway.  Long story short, Emma was diagnosed with RSV on the spot (for once, labwork that comes back almost immediately).  So off to the hospital we went.  I learned tonight that Emma has a mild case of RSV, which is still pretty awful.  Perfectly healthy children who catch RSV very typically end up on a breathing tube for a week because their bodies just can't get enough oxygen.  We are seeing on Emma's oxygen saturation monitor tonight that she is hovering around 92%...which apparently is pretty good for RSV...we're used to around 98 or 100.  An average kid with RSV can't maintain sleeping oxygen levels above 75% sometimes.

The good friends I speak of in the title of this blog post are the absolutely delightful nurses who greeted us with hugs and gasps of how beautiful, sweet, funny, charming, and healthy (relatively speaking) Emma is.  If ya gotta go back to the hospital, it sure is nice to be around a group of people who treasured their time with our baby girl for 3 weeks, a long 18 months ago.  Everyone, doctors and nurses alike, are amazed at well she is doing, compared to how she was when we left this place 18 months ago.  I know and don't take for granted how God has blessed us with a flourishing child.  But it really puts it into perspective to come back to the people and places in our lives 18 months ago.  They are all so shocked at (a) how well she's doing and (b) that she hasn't been back in the hospital since we left in May 2010.  Do you ever have those days when you question where God is?  I do.  And today is NOT one, even though we're back in the hospital.  Because the nurses and doctors here have unknowingly slapped me in the face with a reminder that today Emma may not be well, but she has been growing and flourishing for the last 18 months - something that they never expected.

So I LOVE lists.  Here's the list of things I forgot in my mad dash to pack myself and Emma:
1.  Emma's toothbrush
2.  Emma's toothpaste
3.  Emma's eye patch
4.  The USB cord for my camera

I have a few pictures to post, but #4 above presents a bit of a problem.  Hopefully I can get them posted tomorrow.

Please pray for our baby girl to get over this vicious virus tomorrow.  I am not naive enough to think that she'll get to go home tomorrow, but I also am not pessimistic enough to think it would be later than Wednesday.  RSV peaks around day 4 or day 5, which would be today or tomorrow.  Thankfully, the PICU doc was on day 1 of his 3-day shift, so he'll have witnessed the whole thing from beginning to end to decide if she can go home tomorrow or Wednesday.

Now...let's see if I can get some sleep on this awful bed, crammed in with Russell after he finishes working.  Oh.  Wait a minute.  The midnight running of the Daytona 500 is on tv.  Snooooooooooze.

Short update, HUGE update

Update on Emma's breathing: some nights good, some nights...not so much.

Big development of the day/her life:  Emma took 3 steps today.  Disclaimer:  They were not consecutive, nor were they with different legs (right leg all three times).  But still...she took 3 steps!!!!  HELLO!  My child born with an immobilizing birth defect took three steps today!!

Ok, now for some fun pics.

Loving on Lindsey 

Aunt Kathey, Emma, and Ollie 

Ollie, sweet girl! 

QT with Uncle Robert 

Precious girl 

Fun with Clemson literature 

Daddy, this couch is reserved for me and Aunt Ally, NOT YOU!

Neglected

I have been feeling a little guilty lately about how neglected Lola has been.  As if the guilt alone wasn't bad enough, she snuggles up on Russell's head and my lap and gives us these sad faces every now and then.  So I devote one whole blog entry to Lola.  She's not the nicest dog (ask Matt Knight and his leg), but she's nice to us and Emma.

Milestone

Well, we've reached a milestone I had not even thought of, and now that it's here, I'm not happy about it.  The I'm-old-enough-to-know-when-my-picture-is-being-taken-and-I'm-supposed-to-do-something-resembling-this-weird-expression scrunch face.

Lucky for us, she paused just long enough from her toy box expedition to give us that weird attempt at a fake smile.  Based on the next picture, I have a feeling that the next odd milestone will be fascination with tents, forts, and big cardboard boxes.  Emma also enjoys crawling on top of the wooden platform that runs underneath the kitchen island.  Maybe we need to get her a tent.  And then Russell and I will officially have to begin the addition to our house because there will be no more room at the inn.

We had a pretty run-of-the-mill Valentine's Day.  Russell and I are not big believers in day-of celebrations.  If you get close, that's good enough.  Saturday we had a couple massage and a delicious dinner at Ruth's Chris.  (Side note: Please don't think I'm not appreciative of being able to go to a nice dinner, but Ruth's Chris isn't all it's cracked up to be when you've experienced The Peddler in Greenville.  To pay that much for a meal at Ruth's Chris, there shouldn't have been so many mistakes.  Plus, The Peddler is just better.  The best.  Ever.  Anywhere.)  We got sweet Valentine's cards from our parents, and Nan helped the Doodlebug make me and Russell homemade cards with hearts made from tiny inked thumbs and lots of glitter.  Apparently Emma really loved the glitter - like any child, the messier a project, the more fun it is.  If any of you change her diaper in the upcoming months, don't be surprised to find glitter plastered to her hiney...it got sprinkled on the diapers in her diaper bag.  Russell brought home roses, champagne, and a box of chocolates on Monday night (see what I mean?  Monday is close enough.), and I got to cut some gorgeous daffodils from our yard before they froze Monday night.  It appears that our back yard will be beautiful this spring with the bulbs that are starting to come up.  We have a huge hydrangea, azaleas, and a dogwood tree.  I'm sure there are other plants, bushes, and trees that will be pretty, but I can't identify them.  Ironically, the front yard that the whole world sees on a main road in Gower...not so much.  I think pink plastic flamingos might actually class it up.  So here are the flowers that Russell and our yard gave me:

To quote Margaret Love's signature blogline (see my blogroll), it was a very good (Valentine's) day (and preceeding days).

Still a little uneasy...

So Emma's breathing has been better than when I last posted, but last night she was definitely doing some choppy, uneven breathing as we were falling asleep.  I heard it on the monitor and went into her room to check it out for myself.  Maybe it's just coincidence, but the choppy breathing has occurred on nights that she is wearing a specific mask.

Emma REFUSES to sleep on her back, so sleeping with a breathing mask plastered ALL OVER the front of her face is a challenge.  She has three masks to choose from, each with different engineering schemes.  Only two work for belly sleepers, and I use the term "work" quite loosely.  Those two both leave marks on Emma's forehead that we have struggled with pretty much since she started wearing a mask.  We have finally settled on alternating between the two so that her skin will not start to break down.  The masks don't really have much to do with Emma's actual sleep, though - the machine does all the work with regards to rhythm, strength, and frequency of blowing air, and the masks are just what the air comes out of.  So I have a hard time believing that the actual mask is causing Emma to breathe off-kilter, but I'll continue to test that theory this week.  (PS - One reason I don't want to call Emma's sleep specialist just yet is that he'll either a. not do anything about it except keep me out of work for a doctor's appointment or b. schedule another sleep study just a couple months after the last one that will show nothing except that the settings on her machine are correct.)

Sigh.  A normal day with Emma is not a normal day for most moms, but at this point, I'd just settle for a normal Emma day.

Prayers Needed

This might be nothing, but if I've learned anything with Emma, it's this: what I usually think is nothing turns out to be something.

Emma woke up crying this morning, as she sometimes does.  But when I went to get her out of her crib,  her breathing was very catchy, shallow, and irregular.  In fact, it was so bad, I was absolutely certain that she had somehow managed to get a binky lodged in her throat - I just KNEW she was choking on something.  But she wasn't.  She was still sleepy, and when I laid her down to change her diaper, her breathing was VERY shallow.  No deep breaths at all and again, very catchy and choppy.  As she began to wake up, she was fine.

Tonight I heard her breathing irregularly through the baby monitor.  I went into her room to find her breathing pattern and frequency of breaths fighting the pattern and frequency settings on the bipap machine - she and the machine just couldn't get in synch.  She was inhaling choppy, shallow, double breaths, even though the mask is supposed to be helping, and ultimately, preventing this.  I'm so afraid that her apnea has taken a turn for the worse, but there's nothing more we can do about it than put her on a machine.  Having the Chiari decompression might help, but Troup isn't convinced that the pressure on the specific parts of her brain actually has anything to do with her apnea; it's more like just disorganized brain stem.

I'm going to go sit in her room and read a magazine, just to keep an eye on her and listen for changes in her breathing.  After all, that's how I caught the apnea when it started...maybe I'll catch something else that the doctors will know how to fix and...voila!  She'll be all better!  (I realize this is a pipe dream, but sometimes it's nice to think that maybe something about Emma will be healed one day.)  So please pray that our baby girl is not regressing all of a sudden and that God will teach her brain to breathe just like the rest of us.  We are so blessed to have Christian doctors who believe that God uses them and uses medicine to carry out His will - it's so frustrating to think that all those things are in place, and we still don't see any healing going on.  Please just pray.

Keep on truckin'

Well, good news and bad news from Dr. Troup.  He said the exact same thing he said after Emma's last MRI in June:  "The bad news is, her MRI's look awful.  The good news is, they look exactly the same as they did before."  I won't get into boring details, but we sat around and weighed risk vs. benefit of surgery now or later, back and forth, up and down.  The conclusion was that Emma is progressing more and more, and she's not showing increasing symptoms (or even plateau-like symptoms) of the two main problems, a compressed brain stem and a VERY large cyst on her spinal cord...so why perform a dangerous surgery that may or may not help?  We go back to see Dr. Troup in four months just to check in with him, and Emma's next MRI won't be until spring of 2013.

In new house news, we ordered a new dining room table, partially paid for with my birthday money.  You know you've entered the decade of your 30's when you want furniture for your birthday (and that's really, truly ALL you want).  The table came in on Friday, so we spent Friday evening assembling it.  Emma thought this was great fun, once we got all the dangerous parts out of her reach.  She always has been our little engineer, more interested in how toys work and come apart than in actually playing with them.  If we had let her, she would have really loved crawling into the box and trying to figure out how that dadblasted butterfly leaf works.

Rejoining Civilization

We all had it.  Me, Russell, my mom, my dad, Emma.  All of us.  The nasty, debilitating, energy-sucking, ice-pick-on-your-temples-headache-inducing, good-thing-we-have-more-than-one-bathroom stomach flu.  Not THE flu. Oh, no.  This is an evil creation of the devil for which there is no vaccine.  And apparently no one is safe.  It's going around.

My mom and dad, wise in their years (read: 60+), even said it's one of the worst they've EVER had.  Luckily for me and Russell, the absolute worst of it started almost immediately when Emma was asleep last Wednesday night.  I do not believe that God sends these things to torture us, but I do believe His presence is there - proven by the fact that there is absolutely no way that I or Russell could have changed some of these horrendous diapers while we ourselves were sick as dogs.  All said and done, it pretty much takes you out of commission for a full five days.  If Montezuma's revenge is something you contract in Mexico, this must be Sitting Bull's revenge, taken out on American civilization.  Enough with the illness now - the only things left to discuss are the gory details.  Oh, actually, I will say that Emma has been an absolute charm during the whole thing.  Again, what a blessing in the midst of a storm.

Emma's speech is really taking off.  Well, taking off for her, still really delayed for her age.  This morning Russell got her out of her crib.  When I walked in, the first thing she said to me was, "No!"  I leaned in and she pointed to my nose.  Then she pointed to my teeth - "Teeth!"  "Eye!"  Maybe she'll be a doctor...the first thing she wants to do in the morning is discuss anatomy.  I should mention this to Dr. Troup; perhaps he could get her on a fast track to med school!  We see him on Thursday to follow up on Emma's MRI.  I'm not all that scared about this appointment because nothing's actually going to happen on Thursday...and if he had seen something that required immediate attention, we would already know it.  I know that he won't recommend anything until at least April, so I feel like I can relax for a little while.  Or maybe I shouldn't...isn't that when Hurricane Bad-Things-Happen-When-You're-Not-Looking usually hits?

Piddly little MRI

Emma had her MRI on Friday afternoon, and she, of course, dealt with it all like a champ.  We did our best the night before to stuff her like a little pig and keep her up as late as possible because she couldn't eat past midnight until the MRI was over around 3:00 Friday afternoon.  Emma slept late and didn't fuss once about being hungry.  She even went back to sleep for a 45 minute morning nap.  I can't even remember the last time she took a morning nap - this is how I know God is watching over our little girl.  Not just the big things, but the little things like lulling her to sleep so that she doesn't feel the hunger.

Anyway, Emma came through the MRI just fine, even with the breathing tube down her throat.  She fared much better than she did after her last MRI in June - no choking, coughing, gurgling.  Just kinda scared and not wanting to let go of Daddy.  I fed her in the recovery room, and we were home by 5:00.  It took some convincing to get the anesthesiologist to let her go home.  Hospital protocol states that any child with sleep apnea must be admitted for overnight observation if he or she has been put under anesthesia.  Thankfully, Emma's sleep specialist called in when he was paged late on a Friday afternoon to put the anesthesiologist's fears to rest...otherwise, we would have had to come home Saturday morning.

The hospital staff let Emma take Bun back with her.  She loves on Bun when she goes to sleep, and he's very comforting to her.  When we got back to Emma in the recovery room, Bun had apparently received an IV as well.

We will get the results of Emma's MRI on Feb. 2.  Dr. Troup will tell us then when he's considering doing Emma's Chiari decompression.  Unless her symptoms get drastically worse, the earliest she will have the surgery is probably April.

Emma continues to amaze us with her language development.  Her most recent words are key, tools, three (or something similar), Leigh (my coworker), uh-oh, more, and bot (bottle).  When I say recent, I mean in the last 4 days.

God has truly blessed us with answered prayers.  Thank you to all of you who were praying for our baby girl on Friday.  Our church family has simply been amazing in supporting us.  Stephen, our pastor, came to the hospital on Friday and hung out with us during the MRI.  Words just don't express the respect and adoration I have for that man.  He feels like part of our family.  Russell and I joke around with him like family, too - dangerous territory!  Let's hope Stephen sticks around for another 40 years or so - his wisdom, humility, relatability, and, most especially, love for Christ, are exactly what I want my daughter to experience in a pastor as she grows up.  And if we ever move away from Greenville, we fully expect Stephen and his wife Sylvia to move with us!

In closing, let's take a stroll down memory lane at how Emma was doing this time last year:

December 21, 2010

January 1, 2011, #1

January 1, 2011, #2

January 1, 2011, #3

January 1, 2011, #4

January 5, 2011

January 9, 2011

January 10, 2011

January 12, 2011

Get up, stand up!

Baby girl is learning how to stand on her own!  (I had to take this video from my phone, so it's really small.  You may want to click on the link at the bottom of the video that says "YouTube."  It will take you to the video on YouTube.  Once you're there, you can make it even bigger by clicking on the larger rectangle on the lower right hand corner right below the video or by clicking the icon with the corners outlined.)

Best Friends

Ok, well, maybe not BEST friends.  But they're getting there.  Lola and Emma are really enjoying each other's company more and more.  And Lola is super sweet to Emma.  Lola enjoys placing her toys on Emma's lap so that Emma can throw them.  Lola then takes the 2 steps' distance to retrieve the toys that Emma has done her best to throw a long way and places them in Emma's lap again.  I personally think this is really sweet of Lola because typically, the farther you throw a toy, the more she loves it.  Her little doggie mind knows to humor Emma, though.

The next big moment that Lola and Emma shared was feeding time.  We just leave Lola's dog food in her bowl all the time, but she only eats twice a day probably.  One of these times just happened to fall when Emma thought the dog food bowl looked particularly interesting.  Emma helped her eat (and tried to sample some herself), but she eventually got tired of it, hugged Lola, and went on her merry way.  This video is a little long (3 minutes), so either don't watch it or have a seat.

Fatigued Friday

Re: title of the blog - I was desperate for some alliteration.

Sometimes you're just so tired from dumping out all your toys that you have to take a moment to lie down on your buddy Betsy's lap.

MRI Update

Just got the call - Emma's MRI is scheduled for next Friday at 1:00.  This means that she can't eat for like, 8 hours prior to that.  Does anyone want to trade mommy duty with me that day?

This means that there are 3 additional appointments associated with this MRI.  Oh, and it also means that I feel sick to my stomach.  I'm so scared of them putting that breathing tube down my sweet baby's throat and her having such a hard time breathing and swallowing for who knows how long when they take it out. 

And then there are the MRI results.  Something tells me that Dr. Troup is going to try to do Emma's Chiari decompression in the next six months.  I don't know why I feel that way...Emma's symptoms are not getting any worse, she's progressing in all sorts of ways.  But I just think that he's going to say, "It's time.  It has to be done, and now's as good a time as any."

God watched over our precious one in June for her last MRI, and I know He will be in that room with her again.  Trust, trust, trust is my mantra for the next two weeks.

Now for some pictures to cheer myself up.  Emma snuggled up with me in the bed yesterday afternoon to wind down before her nap, and she fell asleep like this:

Once she woke up from her nap, we browsed for a new dining room table.  Emma found a recliner (and it actually reclines with the footrest and everything) that's just right for her.

The really good stuff

Emma is a pro at unwrapping presents.  She totally gets that paper is meant to be torn haphazardly and that every piece of paper must be removed from the item underneath.  She totally gets that tissue paper must be pulled out of gift bags and that it must be tossed aside with gusto.  She totally gets that presents are usually at the bottom of gift bags and all tissue paper must be removed first.  My heart will forever be warmed by the memories of her second Christmas that was filled with so much hope and childhood fun.

A little bit at a time

So, so much has happened since the last time I blogged - what a busy Christmas season we've had!  I may have to break everything up into smaller bits.  I'll start with Emma's visit to see Santa.  She waited in line like a champ:

Once we got to actually see Santa, Emma wasn't too sure about him...but he was the BEST Santa!  We got some really great shots of her and Santa.  She really looked like a big girl, and it made me a little sad.

In fact, Emma has done a lot of things over the break that have made me just a little bit sad yet VERY excited at the same time.  Emma is now drinking out of a sippy cup without me having to cut a bigger hole or anything.  It's a very specific type of cup, but I went ahead and stocked up on them.  She now says "cute" when we ask her if she's cute.  She has started a few new sounds (doe-doe-doe-doe and doo-doo-doo-doo-doo, which I'm sure will be repeated in a very inopportune place).  Emma likes creamed spinach.  Thank goodness, a vegetable other than green beans.  When Lola barks, Emma occasionally holds up her pointer finger, shakes her head, and says (calmly), "No."  The best is when she does this with a completely serious look on her face like she absolutely means business.

Ok, that's enough bragging for now.  Our baby girl got only her second haircut ever!  My mom is great about trimming her bangs, and we've been letting the rest of her hair grow out.  I finally decided it was time for a haircut because the straight hair on the top of her head was covering up the stunningly gorgeous ringlets at the bottom of her hair.  What was that I said about no more bragging?  These ringlets couldn't be more perfect than if I had curled them with a large-barreled curling iron.  Things didn't start out so well, but she was making faces at herself in the mirror by the end.  I'm so thankful my mom was there, wearing all black and covered in blonde hair, to hold Emma while I took pictures.