Breakdown

So I finally fell apart.  My mom said she was wondering how long it would take me to crack.  When we started this adventure, I flipped into crisis autopilot mode.  I get up and deal with what is in front of me, crash in bed, and do it again the next day.  I don't worry too much about feeling - there is too much to do.  It's only after I give a talk in front of an audience that I get hand-clammy nervous.  It's after I pull the child out of the street that I feel panicky.  It's after we come home from the hospital that I feel sad and discouraged.

There is a lot of "overwhelmed" in there.  In the hospital, I could depend on the nurses and doctors to be making the right decisions for my little girl, and caring for her properly.  At home, I'm it.  It's my job to make sure she gets enough rest.  It's my job to make sure she gets proper nutrition.  It's my job to make she she stays hydrated.  It's my job to make sure her incision heals correctly, that she wears her helmet, that she doesn't fall, that she doesn't pick at her scabs, that she gets good practice moving correctly, that she doesn't get overstimulated... that she stays safe and healthy and happy.  Oh, and I should be taking good care of my other children, and my sweet husband, and laundry and meals and cleaning.  And preserving the produce from the garden!  And chaperoning the field trip!  And parent-teacher conference!  And getting the boys to scouts on time!  And I might need to sleep too!  And I should probably be scrapbooking something.  And so I fell apart.

A person all wrapped up in their own problems makes a mighty small package.  I got all worried about what I needed to do, and how was I going to survive, and what I'm feeling and me, me, me.  I forgot for a moment that the neighbor ladies were bringing in meals, the boys keep the house tidy, the neighbor guys were taking care of the yard, and my sisters-in-law and the grandmas were helping me with the little ones during the day.  And I forgot for a moment that I really didn't need to do everything.

I feel bad, sometimes, that I haven't been able to do all the chores I normally do.  I hate asking for help to do things I know I can do.  I can do the laundry.  I mean, I know how.  It really doesn't take that long, and it's not difficult.  But it's so nice when someone comes over and folds the pile of clean laundry that has been collecting dust on the couch.  Or when someone takes our icky Mount Washmore pile away and brings back a basket full of neatly-folded, sweet-smelling clothes.  Or when someone mucks out the stinky bathroom I've been meaning to clean, but just haven't gotten around to.

It took a while, and a very patient husband, to pull me out of my pity party.  I'm feeling better now.  I can keep going now.  I think we all fall apart sometimes, don't we?  I guess the trick is to remember, and be thankful for, all the good things we do have.  I would never make it without the help I have from Christ.  I need the hope He gives.  I need the love from my family.  I need the help from our good neighbor friends.  I'm so glad I have it.  And one day, I want to be the giver!

Triplets

Yup, we now have triplets - three babies born over a twenty-month stretch.  We get them all up in the morning about the same time, get three clean outfits on, change three diapers in a row, feed three little mouths, play three games of "patty cake," and put them in three swings.  It's too bad they don't all sleep at the same time, though.  One of our triplets is much bigger than the other two.  She gets into mischief more, and is more demanding.  But they are all really snuggly, and we love them!

The New Normal

The early childhood intervention folks came over to evaluate Angelee for their program.  They asked me questions about her abilities.  "Yes," I crowed, "she can say about 12 words now."  I thought that was pretty good for a girl who had only been talking for a couple of days.  And the verdict:  "Your daughter is in the fifth percentile for her age."  Fifth?  Fifth?!?  As in, "95 percent of two-year-olds are better than my girl?"  Sigh.  That's a harsh bit of reality. It's good that she can get into the program, though.

Angelee is quieter than she used to be.  She moves around more tentatively.  We are all more protective of her.  Our nights have been awful, as she wakes up screaming for no apparent reason.  Her words aren't always understandable.  She has a hard time getting to sleep.

The other night, we tried for two hours to get her to go to bed.  She can sleep without her helmet, but when we take it off, I get very anxious about what she does.  We lay her down in bed and she holds still, her dark lashes scrunched up in complete sleep-concentration.  We wait quietly to hear her breaths even out so we know she's asleep.  After a moment, her little head pops up again.  "Hi!" she bubbles, her enthusiasm anything but sleepy.  She's too cute to get upset with.

Happy Unhappy Anniversary

A post from Wednesday:
Two weeks ago today Angelee fell.  How our lives have changed in the last two weeks!  I really don't know that we love our little angel more than we did before; we've always loved her an awful lot.  But our love has changed.  It's deeper, more precious, more tender.  And it's the same for all of our kids.  I appreciate their presence in my heart more intensely as I am more keenly aware, again, of the fragility of life.  It's not quite right that it often takes something sad to make us realize how happy we really are.  I know that my sons would be embarrassed at a big old mushy public display of mother-love  (aw, didja hafta, Mom?), so I'll just say that I love my girl.  Lots.  I love my boys.  Lots and lots.

My other happysad for today is a birthday.  Thank you, Jeanne and Dallas, for bringing your first son into the world a number of years ago.  He became the husband of my youth, the father of my first five boys.  He, like Angelee, suffered from brain injuries - his caused by the brain tumors that eventually ended his life.  Through him I first learned of the sweetness of love, and the heartache of loss.  But because we have once loved, we are forever more able to love.

Shrubbery

Our yard looked like a disturbed anthill this evening.  A bunch of neighbors and friends from our church came over to help us tidy the place up.  No, they didn't help us do it - that would imply we were out there working with them.  They just came over and did the work for us.  I am so grateful, and feeling somewhat chagrined that we can't do it ourselves (quit reading this, Bishop!).  Among other things, they removed a large shrubbery that had been hiding our front door.  Now maybe we'll feel more social.  :-)

Thanks so much!  I wish we didn't need so much assistance, but I deeply appreciate the meals, the yardwork help, the housecleaning, the contributions, the prayers, the kind offers, and the hopeful thoughts.  One day, I hope I can be as good on the giving end as you have been.  God bless you!

Baby in Bed?

I'm trying to do some work on the computer, but Angelee keeps pushing the buttons.  First with her fingers, then with her feet, now grabbing the cord of my laptop and wrapping it around her chubby little leg.  Now she signs "all done" and pushes the computer off my lab.  She looks at the twins' empty bouncer chairs and clearly asks, with a worried face, "Baby?" and signs "bed?"  Yes, my darling, the babies are in bed, just like you should be.  She is a delightful distraction.

Angelee is acting like a two year old.  She is impetuous (I want Mama... no Daddy!) and impatient (pick me up now!).  She is cranky when she doesn't sleep (a terrible night, then no nap until 5 pm - ack), and opinionated about what she eats (I'll take the potato chips with my cupcake, please).  I love it!  I am also completely paranoid.  I want to wrap my precious little girl in bubble wrap, cover every hard surface with foam, and follow her around with a pillow to land on should she stumble.  She is still a little bit wobbly when she walks, and it makes me anxious.  I'll be a nervous wreck before they ever have a chance to put her bone flap back in.  I hate her helmet - it's ugly and it makes her hair damp with sweat and I can't kiss her sweet head.  And I love her helmet - it keeps my Angelee safe and alive.

She is developing some confidence.  She goes from sitting to standing more fluidly.  She is using her right hand more.  She is babbling and making up little songs.  She is saying more words.  She is using more signs.  Who knows what deficits she will have.  But for now, her mama and daddy and brothers are in love with having Angelee home again.

Miracle of Miracles

With so many miracles that we have been seeing, I wondered how many more we had.  Shouldn't we run out or hit our quota at some point?  Surely her progress will slow down and we will work on improving the skills we have, instead of getting new (or regaining old) skills we thought were beyond our reach.  Shows how much I know.

Today Angelee passed her swallowing test.  She proved to the speech pathologists that she could drink thin liquids without sending them into her lungs, and that she could eat solid food.  She hadn't been chewing before, but I guess she remembered.  We were all happy.  No special pureed or thickened liquids diet!  She is now on the "toddler diet:"  small bites, chew thoroughly, don't overload mouth, no choking food (whole grapes, hot dogs, lots of peanut butter), etc.

Her hearing test didn't go as well.  Her right ear passed but her left ear didn't.  We will have to have more follow-up tests with an audiologist later.

Trent was bouncing her on the bed and she started saying, "ahhhh."  With the bounce it was "ah-ah-ah-ah-ah," and made her laugh.  They did that several times, laughing at each other - and something clicked for Angelee.  She could make sounds!  It wasn't long before she was making the "uh" sound when toddlers are asking for something,or a surprised noise at something new.  Within an hour or two, she looked at a magazine picture, signed "baby," and slowly but distinctly said, "ba-by."  The dam broke.  From there she is on to "meow," "Da-da," "ow," "dog," and a dozen other words she knew.  Her favorite word right now is "on," and she says it over and over, just to hear herself talk.  She is also playing with the pitch of her voice, like a new baby does.  Wow.  I didn't know if she would ever talk again.

And saving the best for last - our little girl came home today!  She has to wear her helmet all the time except for sleeping, since they won't be putting the skull pieces back in for several more weeks, but she's home!  I am beside myself with happiness.  It will be nice to live with my sweet husband again, too.  I'm so excited, and scared spitless at the same time.  I'm not sure how we will care for her, but I love our family being together again!

Not in the Schedule

When we arrived, rushed and scared, chasing the helicopter to Primary Children's Medical Center, we had no idea what to expect.  Our baby girl was critically injured, and they weren't sure she would make it through.  Our lives were turned around the instant she went through the window.  We didn't know what would happen next.  This was not on the schedule.  We would have cancelled it even if it was.

We begged someone to give us an idea of how long she would be here, and were stunned when a nurse said kindly, "Plan on being here for the rest of the month at least."  The month grew to two when we were told that her skull flap would not be put back in for six to eight weeks, and we would likely stay in the hospital that whole time.  Family and neighbors mobilized as we started making plans for a long-term crisis.

And even when she does get to go home, it will be all different, we thought, because she isn't moving very well - especially not that right side.

Guess what she did today?  She walked by herself.  This is not on the schedule, but I don't care!

Happy List From PICU

Here is the other old writing I found from day 2 or 3.

A medical student came into Angelee's pediatric ICU room and asked if there was anything she could do for us.  I told her that I needed to make a happy list.  She was confused until I explained that I needed to record all of the things that had gone right, to help me cope when things looked bleak.  She got Angelee's records and helped me compile these encouraging thoughts:


Things that have gone right, in no particular order

Anglee was extubated in only 24 hours.  She is breathing well on her own, quicker than they thought she would.  Her head drain was removed soon after surgery.  She is opening her (one unswollen) eye, and looking around.  She is tracking with her eyes.  She finally looked over to the right (she was first staring straight ahead, then only looking to the left).  She can hear voices.  She understands sounds and recognizes familiar voices.  She is moving all her limbs.  Her lungs sound wonderful and clear.  Her heartbeat is strong and regular.  She responds to touch and pain.  Her sodium levels are self-regulating.  She is able to take in calories and protein.  Her labs all look good.

She likes her blankie and wants it close, showing higher thinking.  She is not in lots if pain with minimal morphine.  She pulls her socks off.  She resists someone else moving her.  All her pulses are strong and even, showing no damage from the IV lines.  She has good urine output.  There are no signs of infection in her sutures.

Her L5 fractured vertebrae is just fine.  She had no other major complications.  She had no organ injuries, and no other broken bones.  Her skull broke into pieces, which allowed the brain to swell out instead of down into the brain stem.  Trent saw her go out the window, so she could get to the hospital within minutes.

The medical student paused here, and said that Angelee was responsive to stimuli and pain even at her arrival on the helicopter.  The hospital staff was happily surprised to see this, as it is unusual and they were expecting something worse.  Angelee has spontaneous movement, meaning she is doing things on purpose.  She is responding to more stimuli, becoming a bit more alert.  The medical student said Angelee was making wonderful progress, faster than they thought she would, and that she was one of the best neuro cases they have had.

A good, encouraging list to be sure.

Heartache

I found some writings that had never been posted, so I'll get them up now.  This one is from day 3.

I was tidying up in the living room when I found a tiny red hair claw clip.  The world stopped as I realized she had been wearing these in her hair when she fell.  Angelee and I had just barely gotten to the point where 1) she would hold still while I did her hair, and 2) I was figuring out what to do with her hair.  She is my first girl, and I've been a little bit clueless on girl hairstyles.  So I bought her a pile of clips for her birthday.  Wednesday morning, she held nice and still while I brushed her soft hair, and pulled it back with a little clip on each side.  Now I was holding one of those clips, with a bend mark on one side, and missing teeth on the other side.  It had obviously been hit in the fall.  Oh, my heart aches over and over again.

The boys found the clip on the concrete patio underneath The Window.  It was right there next to the window screen still on the ground.  I haven't been able to go get the screen to reinstall it.  I can hardly look out the windows, and I can't open them either.  There was a little yellow ball out there too.  She must have had it in her hand.

I get the same aching feeling when I see her empty car seat in the van, when I find her favorite denim hat in the corner, when I clean around her box of board books.  I closed the door to her room because it was too hard to look in and not see her there.  One boy opened it back up - the sight of her things comforted him - so I've left it open now.  Open, and empty.  I don't know whether it is worse to find these little touches of Angelee around the house, or to not find them anymore.  Either way, it aches.

First Haircut

Angelee has had really yucky hair.  Not as in "a bad hair day," but as in "a bad hair two weeks" and then some.  It is dirty and greasy and matted to her head.  The ointment they put on her stitches to keep them clean is thick and oily.  Angelee rubs the shorn part of her head and spreads the stuff all over in her hair.  Her long hair gets stuck on the ends of the stitches, and in any tape nearby.  The hair on the back of her head is fuzzed from tossing and turning while she lies in bed.  Portions are so snarled up they have nearly felted together.  I've tried several times to wash her hair, but the improvement is minimal.  Oh yeah, and she only has hair on half her head.

Our options are: 1) ignore it.  2) let it go to dreadlocks.  3) shave it off so both sides are the same.

1) I can't.  I love combing my little girl's silky fine locks.  I only have one girl, anyway!
2) Ugh.  Not for a little blond girl.
3) I can't quite bear the thought of her being all bald.

How about a compromise - a haircut, but not a shave.  I put her hair in a sweet little ponytail, cried, and snipped the curl off.  Then I composed myself and gave her a cute little pixie haircut.  It's much more manageable, it doesn't get in the way, she doesn't look like a boy, and we cut off the parts that were matted beyond repair.  And here's the best part - it's still long enough on top that we can totally do a comb-over, like an insecure balding guy does!  We'll post pictures.

Going for a Walk

When the therapists came to get Angelee today, Trent let them take her down to the gym without him.  We have been working on getting her to trust other people again.  There are some very talented people who work here, and it is fun to see how much good they do.  When she was done, they let her come back on her own two feet.  She was walking!  She is very wobbly, and you have to hold her hand (she thinks she can move better than she can), but she can walk short distances.  I am astounded.

Angelee is becoming much more alert now.  She still needs to rest a lot, but her vibrant little personality is showing up more and more.  I was sitting on the foot of her bed when I got hit with a pillow.  I suspected Trent, but Miss Angelee was sitting there with a mischievous smile on her face.  When I asked if she had thrown a pillow at me, she cocked back her arm and let another one fly.  She also delights in throwing toys on the floor.  What a fun game!  It warms my heart to see her smile again.

The Support Network

This is not my first time dealing with medical crisis.  My first husband was in and out of hospitals and treatment facilities for seven years while we battled brain cancer.  I don't know anyone who doesn't have a good-sized crisis or two to their name (if you haven't yet, just wait.)  :-) .  Death, wayward children, divorce, lost employment, illness, relationships issues...they all can break your heart.  On the other hand, surviving them can make us stronger, more resilient, more capable of dealing with the next thing life throws our way.  You find out how much you have in reserves when you have to use them.  You also find out who your real friends are.

We've had offers for cleaning, doing our yard work, child care, chauffeur service, meals, emotional support, and lots of others.  Thank you all so much!  I know you can't take away this terrible situation, but it is so comforting to know that there is a safety net strung out underneath us while we wobble along this tightrope.

So what do you do when a friend has a crisis?  I've gotten a lot of "What can we do?"  So here is a short list for crises in general.  For our particular situation, I think we're covered for now (a thousand thanks!).

-bring food.  It's comforting.  It's wonderful not to have to worry about meal planning, grocery shopping, and meal preparation.  Also good are snack baskets, sandwiches and portable food to take to the hospital so you don't have to eat in the cafeteria, and a frozen dinner or a quick-fix meal to have on hand.

-listen.  We all need to talk sometimes.  It's ok to just sit and be quiet sometimes.  Don't demand that I spill my guts, but don't come to me crying and distraught so I have to comfort you, either.

-give specific suggestions.  I can deal much better with, "Can I take your car down and fill up the tank?" or, "Do you need me to get anything at the grocery store for you?" than "Let me know if I can do anything."  You might even help me remember that I do have a need there.

-sent supportive messages.  Phone calls are nice, but I'm often too busy to be able to pick up, and I haven't the time to talk to everyone.  I love to get happy comments on this blog, or notes in my email (Trent hasn't had a moment to check his, though).  A personal note gets posted on the bulletin board in Angelee's hospital room.  The hospital will bring in messages from their website, or even just a phoned-in message.  It's nice to know people are thinking of us.

-don't worry about saying the wrong thing.  Don't think you have all the right words, but don't worry too much about having to be eloquent.

-visit when appropriate.  Call to make sure it's ok first.

-be understanding.  If I don't return your call, I don't hate you.  If I don't answer, I'm not ignoring you.  If I don't talk long, I'm not trying to get rid of you permanently.  If I say no, I'm not trying to be mean.  I just can only concentrate on the essentials right now.

-establish a contact person.  It's nice to only have to tell the story once, and then everyone else can contact that person to get information.  Saves a lot of time and emotion.

Things to NOT do:

-stay for a long time.  We all tire out quickly.
-visit with a big group.  It gets loud and crazy and way tiring.
-visit if you are sick.  Duh.
-ignore that there is a problem.
-be negative.  We need to be lifted, not dragged down.
-make demands.  Even if I could do something two days ago, that doesn't mean I can today.
-think that my suggestions work for everyone.  (my disclaimer)  IF you have a question about what is appropriate, ASK!

I had a list of wonderful suggestions from the Young Widow's Group, but I can't find them now, or I would post that, too (anyone have Lorna's email address?).  So here is my best bit of advice:

Be a good friend NOW, before the crisis.  Good friends can sometimes dispel the problem in the first place.  Or, when a situation does come up, we are much more apt to turn to folks we already know care about us.  Hug your kids.  Tell your family you love them.

Thank you, thank you, to all of the beautiful souls who have helped in a hundred big and little ways.  You lift my spirits as you lift my burdens!

Is it True?

Trent called me at the hospital this afternoon, saying excitedly, "Is it true?"  Ummm...  I'm lost.  "Is it true that they are sending Angelee home today?"   Ummm... no.  She can't eat solid foods.  She can't drink thin liquids (water, juice, milk).  She moves slowly and sometimes shakily.  She doesn't always hold up her head well.  She doesn't talk.  Her right side doesn't work very well.  She can hardly walk, even with support.  Her bowels aren't moving spontaneously.  She has no skull on half of her head.  She is very irritable, and isn't sleeping well.  No, I don't think it would be a good idea for her to come home at this point.  Wouldn't it be nice if she were well enough, though?

They're Watching

Angelee is starting to climb out of bed.  She crawls around in her bed quite well, retrieving a book that is just out of reach, or the stuffed dog she tossed.  I'm learning not to put things just out of her reach on a table - she goes after them!  She tries to climb down when I leave her bedside. She's getting more mobile as her body heals, but her mind hasn't caught up.  She doesn't have the rational thought abilities to make good movement choices.  Am I actually saying that about a 2-year-old?  That's what got us into this in the first place!

I have to watch her very carefully.  The nurses station someone to watch her during the night when I'm asleep.  They are very unobtrusive, and I appreciate their diligence in keeping Angelee safe - but have you ever slept while someone is watching you?  It's a little odd.  :-)

Exhaustion

I spent the day in the hospital yesterday, like normal, but sent Trent home to get some rest.  Thanks, Kalene, for helping with the babies in the evening!  I stayed here overnight with Angelee and the twins.  They all three took turns waking up. The hospital is not a good place to rest.  I'm here on my own today, and they just now are falling asleep for a nap.  I may sleep tooo  oo o ...

I Love to (Hear Her) Laugh

She laughed!  Not the little tiny angel smile I am so fond of, or even the big toothy grin she does for the babies that makes her daddy's heart melt.  No, she chuckled a little, and then outright laughed!  Oh, it was a beautiful sound.  And if anyone is wondering what was so funny for our little girl, it was the funny cat videos on YouTube.  I wish I knew how to post one here.  She loved it!

(edited to add: I figured out how to do the YouTube thing.  This is her favorite cat video.  I think we've watched it waaaay too many times now - but it always makes her laugh!)

Nutrition

Wheat thins dipped into a cup of vanilla pudding.  Also a cup of yogurt over homemade granola.  Yum.  But this is not a post about my nutrition, although it could use some improving.  :-)

Angelee likes to eat chocolate pudding, yogurt, and applesauce.  Yesterday she ate a pureed banana, and today she tried the pureed pancakes (?).  Evidently they were ok, because she ate them.  She has been eating some, but not drinking.  Proper hydration is so important to being healthy.  If she doesn't drink enough, they have to keep her feeding tube in to keep liquids going in.  She wasn't sucking hard enough to get anything through a straw, and she wasn't interested in a sippy cup.  But this morning, she chugged 6 ounces from a bottle.  She doesn't want the bottle this afternoon, but hopefully she'll start getting more by mouth soon.

Happy Day

When I lumbered in Angelee's room this morning, hauling my bag, the diaper bag, food for lunch, the things Trent requested I bring, the double stroller, and two babies...  Mom, the pack horse...  Anyway, when I came into the room this morning, Angelee was visibly agitated.  She held out her hand to me, so I sat down on the edge of the bed and took her hand.  I hadn't even sat down before Angelee pulled herself up to standing and launched herself at me.  I was amazed as I held her upright body against me.  She calmed down soon in my arms.  My little girl wanted a hug from Mom!

Later, Angelee was sitting in my lap as I was sitting on the bed.  We propped one of the twins up in her bed, and she grinned at him.  He was waving his little fists around, and caught her finger in his fist.  She was alarmed and quickly shook him off.  She was quiet for a moment, then forced her finger back into his fist.  She was playing with her little brother!  We call this our new baby therapy.  Don't anyone steal our great idea before we can patent it.

The baby started to spit up a little, so I said, "Angelee, he's spitting up.  We need a burp cloth."  Her head, although hampered by the neck brace, moved back and forth until she found the burp cloth.  She grabbed it and wiped up her little brother's face.  She responded to speech!  Although I wanted to turn a cartwheel, I waited until Trent came back in the room.  I tried it again for him.  "Angelee, get the burp cloth."  Again, she looked, found it, grabbed it with her good left hand, and wiped up the little guy.  This is something she often did at home, and she remembers it.

Also, she ate a cup of chocolate pudding and a pureed banana.  When I showed her a picture of a banana, she lunged for it.  I said "banana" and signed it, then helped her to repeat the sign.  When I let go of her hands, she made a good attempt to do it by herself.  What a happy day!

Keep Humming

I was able to drive our little car to the hospital today (thanks for getting it registered, Gram & Pop!).  It was nice to not have to drive our big, hulking van on our daily trek to the hospital.  It wasn't until I got on the freeway that I noticed that the windows in the car were down.  They are manual, not electric, so I couldn't reach across to close them safely on the road.  I have been humming hymns in the morning especially, as a way to calm myself, but with the road noise I couldn't hear myself hum.  I knew I was still humming, because I could occasionally feel the vibration of particular notes, but I couldn't hear it.  Even without the hearing, I felt better humming, so I kept at it.

This is my analogy for the day.  We're working with Angelee, but sometimes we may not see any results.  I believe it is still helping her to get better, so we'll keep at it.

All Over the World

This blog has been up for 5 days, and already we have had close to 2,500 hits - from 5 different countries.  Wow!  I had no idea that so many people would be interested in our little angel.  Thank you all so much for your support and prayers - we're all pulling for you, Angelee!

Monday, Monday...

Whew!  We started out the day all a mess, didn't we?  Fortunately it did get better as the day went along.  Some days are just like that.  You're doing well, and then... CRASH!  And some days aren't too bad, but they aren't really great, either.  Today was... well, a Monday.

Angelee had a big day today.  She had a swallowing test, which involved barium pudding, barium nectar, barium juice, and an x-ray machine.  Yum.  She is now allowed to eat foods that are pureed, and thickened liquids.  Here we encounter one of those circular problems.  They want her to eat more so she can get good nutrition.  She won't eat because her tummy is full of the stuff they put down her feeding tube.  So lay off the feeding tube so she will get hungry.  Oh, now she isn't eating enough so she needs to have food put down the tube again.  And now she's not hungry because her tummy is full...  We'll find the balance.

She had a CT scan to see if her right eye was injured in the fall.  That checked out just fine - and she was such a good girl to hold so still for the exam!  Daddy carried her there and back, with her lovely brown helmet on.

The neurosurgeons came in to see how she was doing, and were discouraged that she still isn't responding to words.  They said it would be six to eight weeks before they would put the bone flap back in.  We can expect to be in the hospital all that time - and then longer to recover from that surgery.

The play therapist came in to see how Angelee would do with toys.  She was good about reaching for a toy, pushing buttons to make music play, holding a toy with her right hand, and transferring a toy from her good left hand to her right hand.  I was encouraged by all the things she could do.

Angelee was evaluated for removal of the neck brace, but they decided it would be better to leave it on for now.  That's too bad, because she hates the thing.  I can't say I blame her.  She has figured out how to take it off, though, and does so with some regularity.  You go, girl!

We put her on the floor to see if she would walk.  When her feet hit the floor, she stiffened her legs to stand, but wouldn't move her feet.  We'll try that one again later.

Sometimes

Angelee can smile.  She can look around at things in the room.  She can giggle.  She can respond to a command.  She can move her right arm and leg.  She can grasp things in her right hand.  She can eat soft foods.

But just because she can doesn't mean that she does.  Most of the time, she doesn't.  Most of the time, she lies in bed staring somewhat vacantly.  But the fact that she has done these things means the wires still work in her brain, which is hopeful!

Monsters Under the Bed

I slept well last night.  I had a feeling I needed to get some quiet moments this morning to pray and read - and it's a good thing I did.  When I got to the hospital, Trent was looking pretty ragged.  The neurosurgeon had just been in and indicated it would be six to eight weeks before Angelee's bone flap is put back in.  This trauma is getting longer.  Smiling is difficult.  Possible, yes, but often the smiles are forced through tears.

I had a monster under my bed last night.  He always lives there, but doesn't come out very often.  His name is "What If."  What if I had...  What if Trent had...  What if she didn't...  And then I can either fall apart or beat him back under the bed.  He always lives there, though, and he's bigger than he used to be.  I can't write any more because it's too painful.

Sunday News

We still don't have internet at home, so I couldn't post anything yesterday.  Our router was going bad, but the new one doesn't like us.  Maybe some RSP (Royal Smart Person) can come fix it for us.

I took the boys up to the hospital on Sunday.  The boys didn't want to be away from Angelee at all, so we went to the church services the hospital provides.  I thought I would just take the boys to the short meeting, but Angelee ended up going with us, too.  It was her first outing.  The staff unhooked her, fastened on her helmet, and away we went.  Our 16-year-old was so gentle as he pulled her in the little red wagon.  During the service, I picked her up and rocked her in my arms.  It felt so good to hold my little girl again!  When it was over, her 14-year-old brother rearranged the pillows and blankets in the wagon, and pulled her carefully back to her room.  I am so impressed with how tenderly these big teenage boys treat their beloved little sister.

What else?  She rolled over for the first time, which was exciting because she is showing us that the muscles in her trunk are still working.  We'll have to watch her carefully that she doesn't wiggle herself out of bed.  She smiled for her baby brothers.  She pulled the feeding tube out of her nose - with her right hand this time.  And she gave her daddy a big, toothy grin and a little giggle.  He was so touched to see that our Angelee really was still in there.

We got home early enough that we could get caught up on the laundry, and the boys made caramel popcorn.  They couldn't get enough of it from the wonderful care package we got (thank you Erica, Cindy, and Christy!), so they made more.  And the best part was that we were able to get a decent night's rest.  That makes all the difference.

Saturday News

I didn't have any internet access yesterday, so I wrote, but wasn't able to post it.  So, a day late, here are my thoughts from yesterday.

Angelee started out today (Saturday) by being the healthiest girl in the Pediatric ICU.  The staff noticed this, so they kicked her out.  She is was moved to a rehabilitation unit this afternoon!  Yay!  I'm also happy because the babies can be in the room with us - as long as they are quiet (they usually are).  I've been stuck in the waiting room with them this whole time in PICU unless someone else came to spell me off.  Fortunately there have been grandmas and grandpas, aunts and uncles coming up to help us.  Thank you!  It will be nice to not have to keep running our of Angelee's room to see if a baby needs to be fed or diapered, though.

When we have asked the doctors about long-term effects, or about a prognosis, they would almost always say, "It depends..."  I know.  It depends of fifty-two thousand possibilities.  But can you give be an idea?  A ballpark range of what could happen?  The best and the worst-case scenarios?  An inkling of what usually occurs in these types of situations?  One doctor finally told us that we are in "phase one" where they are trying to asses everything vital and just keep her alive.  The next phase would be rehabilitation.  I guess we are in "phase two" now.

Angelee had her arterial line taken out of her right hand today.  Now they will measure her blood pressure intermittently with a regular blood pressure cuff.  With that line out, and her IV moved to her left hand, we wondered if she would move her right arm more.  Her right arm and hand are quite swollen, and she hasn't moved them much unless she had to.  Looking at her red, puffy arm, someone asked if her arm could be broken.  If it was, that would explain the lack of movement - and would be better than neurological damage.  Trent, shaking his head, said, "I never thought I would be glad if one of my children has a broken arm!"  She went down for an x-ray, and we'll see.

The speech pathologist came in today.  She was evaluating Angelee's swallow to give her the green light to start eating.  She explained that thick, soft foods were the easiest to swallow, and asked if Angelee would eat yogurt, pudding, or applesauce.  Would she?!  Those are some of her favorite foods!  The pathologist  began with yogurt, since it was cold and would give more sensation to Angelee's mouth.  She held up a peach Yoplait, and while she struggled to open the cup, Angelee started to salivate.  Her one good eye (the other is swollen shut), was wide and locked on the yogurt while she slowly smacked her lips.  Angelee opened up willingly for the first bite, and mulled it around in her mouth for quite a while.  Just when I started wondeing if she really could still swallow, Angelee's jaw stopped working and she looked expectantly at the cup.  The second bite went down much faster, and then she was eating as fast as the yogurt could be spooned into her willing little mouth.  Between bites, her pink tongue licked every last bit off her lips.  We stopped after just an ounce so as not to overwhelm her stomach, but it still left a little girl very happy.

I took all the kids up to see our girl again today.  I have decided it wears me out to have everyone at the hospital, but what else can I do?  I can't stay away from Angelee, so I can't stay home with the boys.  But they want to see their sister, so I have to take them.  Maybe we will figure out some sort of way to work it out.  But by the time we have been at the hospital for a few hours, I am exhausted.  I just wanted to sit and cry - but I can't because I had to drive home.  It's probably a good thing to have to keep going.

Trent called this evening to give us an update.  There was a miscommunication about Angelee's pain medication, and she spent a few miserable hours in increasing pain.  After a quick dose of Lortab, she settled down again - and was sucking her thumb!  Angelee has always been a thumbsucker.  Her favorite "I'm tired or not happy" pose is with both fisted hands in front of her face.  Her left thumb is in her mouth, her right hand holding and stroking her cheeks with her blankie.

And to top off the day, how about a high school dance?  Our oldest went to homecoming tonight.  Guess where their group of four couples ate?  Our house!  And guess who chauffered them to and from the dance?  Me!  Yes, I know, I'm crazy.  But it was fun to see the kids enjoying themselves, and satisfying to watch my boys grow up.  I rather like my teenagers!

Show Me Your Teeth

I am exhausted.  Trying to care for my baby girl, the twinfants, and having all the kids in the hospital wore me right out.  One of the babies is getting fussy, and I worry that I'm making enough milk for him.  The hospital is not a nice place for a family to hang out.

Note to self:  find new Friday date night venue.

Angelee's oldest brother and her grandma were in her room this afternoon.  Her brother was talking to her and said, "Show me your teeth."  This is a little game he would often play with her.  We had not been successful in getting her to follow any verbal commands like "squeeze my finger," or "lift your arms," but she evidently listens to her brother more than she listens to the doctor.  She looked at him and opened her mouth!  Yay!  That means 1) she can hear for sure, and 2) she understood that spoken command.  That's a huge step and we are so excited!

Elevator Adventure

All the boys came up this afternoon to see Angelee.  They have a great group of people here who work with the kids to teach them what is going on and answer questions.  Before the kids went in to their sister's room, they had a meeting with the Child Life volunteers.  On the way to the meeting, my 2nd grader and I took the elevator with the babies in the stroller, while Trent and the older boys ran up the stairs.  We waited and waited for the elevator, regretfully knowing that we had lost the race to the third floor.  Finally, the elevator came and he ran in, looked out the glass side, and turned around just in time to see the doors close - before I could get the bulky double stroller in!  There goes my child!

I pushed the call button again, hoping the doors would open back up, but nothing happened.  After an agonizingly long moment, another elevator opened.  I was moving to get in, hoping the get up to the floor where my boy was when I heard him running up the stairs.  The elevator had dumped him off a floor below us.  Soon we were reunited, in the elevator, and on the proper floor.  Trent was starting to worry what was taking us so long, but we made it!  Who knew a hospital could be so dangerous?

Li'l Pumpkinhead

Day three at the hospital, and our little Angelee has a big head.  Her brain is still swelling, and will be until about 72 hours after the accident.  72  hours would be tomorrow late morning - so tomorrow afternoon it should start going back down.  The side of her head is swollen, her left eye is swollen shut, her cheeks are shiny with skin stretched tight over the swelling underneath.  The right side of her face is also swelling.  Even her forehead is swollen.  I used to call her my "li'l punkin" sometimes; now she really does have a pumpkinhead.

Yes, the breathing tube came out last night.  And hooray, it stayed out!  Other ins and outs:  The central line they had threaded into a main artery through her groin was pulled out.   A tube went into her nose and down into her stomach to start giving her food.  Aren't all two-year-olds happier and better behaved with a full stomach?  I know I am.

A Glimmer

Trent was talking to some of the nurses, therapists, and random hospital people in Angelee's room tonight.   They were all so encouraged that she was well enough to remove the breathing tube tonight, and were commenting on how quickly she was gaining strength.  One gave as her guess that they might be moving her off the ICU floor tomorrow.  Another, nodding, added that he thought she might even make a complete recovery.  Trent, in shock, turned to him and repeated, "a complete recovery?  You are the first person to even verbalize that this may be possible."  The nurse hastily said he wasn't making an official prognosis or anything...  but it was spoken.

I'm not holding my breath, but how sweet that would be...

Junior High Scare

This has been a little rough on the older boys.  Five years ago their father died from brain cancer, and I can only imagine that their worries for their sister may be tainted.  I'm trying be home from the hospital when they get home from school, trying to keep home life as normal as possible, but I can't control everything.

My 9th grader got called into the office today at school.  He became very worried when they told him to bring his books as he wouldn't be coming back to class.  His worry mounted to alarm when, at the front office, he saw his 7th grade brother, similarly summoned, but no parents.  The boys were ushered in to the assistant principal's office, where he and the school counselor sat with grave faces.  The boys told me they were "freaking out."  What would anyone have thought?  It turns out that the boys were just being invited to talk to the school counselor to work out any trauma they might be feeling due to the situation with Angelee.  Well.  If they didn't feel any anxiety before, that experience would certainly give them a hefty dose!

Extubation

Angelee was extubated tonight.  No more breathing tube down her throat!  Trent said she tried to start crying, realized her throat was rough and sore, and quit immediately.  Angelee loves her daddy and was wrapping her legs around his arm.  She has been more animated since the sedative was dialed down, which is always a good thing.  I wasn't there, so I'll let Trent add to this post if he would care to, but it sounded like a happy, good progress moment.  Trent will stay with her for the night while I hold down the fort at home.  Keep pushing, little Angel!

Happy Birthday

We celebrated Angelee's second birthday last week.  Grandma and Opa brought over creative toys, wrapped in colorful paper she quickly learned to tear off.  Grandpa called, making the birthday girl grin and walk around for the next hour saying, "Talk!  Phone!  Pa!"  Gram and Pop brought cute outfits and an adorably soft stuffed animal.  Dad pulled out a talking penguin game.  And Mom gave her... plastic pants to go over her cloth diapers.  Also...a hairbrush.

Memo to Mom:  plastic pants are not FUN.  Grandmas and Grandpas and Dads are fun.

Memo to Angelee:  Mom may be the one to buy you underwear, wash your peanut butter face, brush snarls out of your soft blonde hair, and clean out your nose when you have a cold.  Moms do that.  But Mom will always be your biggest fan, little Angel.

A few days ago, we started counting up the words little Angelee could say.  We quit counting once we got over 200 - not because that was all the words she knew, but rather because it was too much work to track.  She has been adding to her vocabulary at an amazing rate.  Her latest words were "helicopter" and "applesauce."  There is a trick to being able to understand the language of a toddler, and it occasionally requires the gift of tongues.

For example, here are her words for our family members, in decreasing age order:  Daddy, Mama, Dace, Nay Nay, Aduse, Mafoof, Tookie, Adleech (use the gutteral German "ch"), Sham, and Danny.  Most of the names she also signs, which helps us decipher her words.  Grandma and Grandpa share the name "Pa," spoken while giving herself "five."  Obviously some are more understandable than others, but all are dang cute!

We love you, Angelee!

From the Mouths of Babes

Our seven-year-old was talking very seriously to me this evening.  "You know, Mom," he says, "it could be worse."

"Oh?"  I raised my eyebrows, my curiosity piqued.

"Yeah, it would be way worse if you put a grenade in your mouth when it was exploding."

A while later he informed me that Angelee probably didn't jump out the window on purpose.  Right.  I love my kids!

Choosing the Silver Lining

I was up before the sun rose this morning - we had a hard time sleeping.  Trent was plagued with nightmares, watching her fall out the window over and over again.  The day was cloudy and dark, feeling as dismal as I was.  I watched the clouds through the window until I saw the bottoms of the clouds start to shimmer with morning light.  It was the silver lining.

As we drove up to the hospital, we talked about how to be happy.  Normally, it's quite easy for stress and sleep deprivation to make parents grouchy, but this stress takes the cake.  Trent and I had often discussed how love is more than just the "falling in love" feeling; it is a decision that we have to make - and keep making.  We came to the conclusion that happy is the same way.  If we want to be happy, we have to decide to be happy instead of waiting for some elusive feeling to just happen.  I will then resolve to think happier thoughts, look for the happier moments, and work - even though it may be difficult - to find the silver lining.  I choose joy.

When we came in to see Angelee, we found her occasionally waking up.  It turns out that she wasn't sick enough to be put into a medically-induced coma after all.  She is being given a mild sedative to keep her from trying to pull out her respirator tube.  She is doing so well that they are planning to take out the respirator tomorrow, and the sedative can be discontinued.  She wakes up and looks at us with those beautiful blue eyes, and I can tell by the furrow in her brow that she is still somewhat uncomfortable.  My Mommy-heart breaks to not be able to help her, but she drifts off to sleep again soon.  I'm so grateful for the medical staff here who can keep her as comfortable as possible.  I am glad I thought to bring her blankie - its soft fibers give her a little whiff of home, and has been such a comfort to her.  I am grateful for pain medication.  I am glad my little girl is still alive, and doing so well so soon.

The Sad Beginning

Sweet Angelee, named for the angels from Heaven, thought she had already earned her wings and tried to fly from a second-story window.  Her skull was fractured when she hit the concrete below.

We rushed her to the local hospital, where they did some CT scans and airlifted her to Primary Children's Medical Center in Salt Lake City.  She underwent surgery where the doctors removed a large piece of her skull to allow the brain room to swell.  Hopefully this will alleviate any secondary brain injuries from the accident.  The anesthesia wore off for a few hours, and they were able to assess her neurological functioning.  We were all so happy to see her open her eyes, recognize Dad and Mom, kick her arms and legs, grab for her favorite blankie, and try to pull all the lines out.  

Right now, she is in a medically-induced coma for a few days.  This will allow her brain to not have to do anything but heal.  She's a tough little cookie and has several things in her favor: she is young, healthy, her brain is still developing, she responded well to us after the anesthesia wore off, she has no other noticeable brain trauma, we got her to treatment quickly, and she has the best possible care in five states.

Angelee doesn't normally like to stay in bed, but she can't open her bedroom door to get out, so she just waits for us to open the door.  She doesn't fuss or scream, just plays behind the door.  She often falls asleep there on the floor, and we have to go put her back to bed.  Wednesday night, she got out of her bed as usual, and curled up behind her bedroom door.  Trent went in to put her back to bed and stood in the doorway, waiting for his eyes to adjust to the dark.  Angelee saw Daddy standing there, sprang to her feet, ran across the room, and jumped into bed before he could say a word.  Cutest thing ever.  Tonight, I think she'll stay in her bed.

New Blog for Angelee

Something whispered to me last week that our family should start a blog.  I had no idea how to start, but my teenaged boys quickly learned, then showed me around.  Who knew that this week we would find a blog useful for keeping everyone up to date on our family trauma?  So we regretfully start this blog, dedicated to our little Angelee.  Thank you all for the outpouring of love and well wishes we have already received.


Check back often - I don't think I'll find much to do in the hospital today.  Writing clears my head and makes me feel like I'm doing something useful.  I only wish I could do something useful to heal our little girl.