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.