Wednesday, January 27, 2016


Lily got out of the hospital on Friday!  While I rejoice that she is home, I think there's a part of me that is still trying to process the twelve days that she was in the hospital.

Maybe there's a certain kind of shock involved in all of this.

And there are certain aspects of it all that I just keep going back to.  Like the first morning.

Dave and I had texted early Monday morning, around 4:00, and the thought was that I would just go to work as normal, probably try to take a half day, and be at the hospital around noon.  Things felt comfortable in that decision.

Two hours later, I got a text from him saying Lily wasn't doing so well.  I might want to get the kids and get to the hospital.  That was not what I expected.  At all.

I just remember feeling panicked.  The kids were all asleep.  I had to not only call into work, but I also had to put in for a sub.  I just remember sitting at the computer, hands shaking, crying, "Oh my God.  Oh my God!  OH MY GOD!  OH. MY. GOD!"  A crescendo of prayers and pleas and disbelief and panic and fear all balled up into those three words.  Even reliving those words, here, now, brings a certain aftershock from that earthquake that rocked my soul.  I think my body even composed a quick tuck, a deep breath, and a muttered, "Help me do this, Lord" before I got up and figuratively and literally got it all together.

Luckily, my in-laws got to the house before I left, so I was on the road to the hospital alone.  And this is the part I feel compelled to share.  While my legs felt like rubber and my thoughts were on how I couldn't wait to get to Lily and sing our "Jolly Holiday" song, there was also this sensation of peace that seemed to be floating all around me.

It's the same sensation I felt in the PICU.  Now sure, I was worried, but through it all, that whisper of peace hovered around that room.

One of my favorite songs these days is a song called "Just Be Held" by the band Casting Crowns.  While my favorite line in the song is "Your world's not falling apart, it's falling into place," I think this song more powerfully describes exactly what that peace I felt in the car and in hospital was.

I was simply being. . .held.

Take a listen:

So tonight, my prayer, my friend, is that whatever your trouble, no matter how minor, that you, too, find the peace in Him when you give all that trouble over and Just. Be. Held.

Wednesday, January 20, 2016

It's a Jolly Holiday

When Lily was a baby, she cried a lot.  I can specifically remember a day: she was crying, and I took her outside on the front porch and rocked her, trying to get her to stop crying.  While I rocked her, I sang the tune "Jolly Holiday" from Mary Poppins, Lily-style: 

It's a jolly holiday with Lily.
Lily makes your heart so light.
When the day is gray and ordinary,
Lily makes the sun shine bright.
Happiness is blooming all around her.
The daffodils are smiling at the doves.
When Lily holds your hand,
You feel so grand.
Your heart starts beating like a big brass band.
It's a jolly holiday with Lily.
No wonder that it's Lily that we love.

I can't think of a more appropriate song for this little girl.

One time when she was in the hospital (I think after her bowel obstruction), she was crying, so they let me hold her.  I started singing that song, and she immediately stopped crying.

She knows this song.

When Dave texted me early Monday morning (the morning Lily was admitted), telling me that Lily wasn't doing so well and to get the kids and come to the hospital, there came a time while I was driving, when all I wanted to do was get to the hospital and sing that song to her.

Remind her that this is how much she means to me.  

Even today, when I got here, she was in good spirits, sitting up in her chair, but she wasn't her playful self.  When I was all alone in the room, I sang that song, and I swear, that's when she took my hand and started beating it against her leg and started stomping her feet and started cooing.  It's almost as if she was singing along with me.

Yes, she knows this song.

So if you know the tune, sing it.  For Lily.  This little girl has a lot of people cheering her on and praying for her.  Probably because they feel the same way about Lily, too.

When Lily holds your hand, you feel so grand.
Your heart starts beating like a big brass band.
It's a jolly holiday with Lily.
No wonder that it's Lily that we love!

Monday, January 18, 2016

The Story of Grace

Lily has been extubated!  Now she's fighting the full-face bi-pap mask and withdrawal from some of her meds.  This is just as hard to watch.

We've come a long way.  The nurses keep saying how she looks like a different child from Monday when she was admitted.

I think she won this one.

But others have not been so fortunate.

One night when Dave was here, I got this text:

They lost a little one up here tonight. . .

And we have lost so many little Trisomy 18 babies lately. 

Oh, how my heart breaks for these families.

Yet I sit here, and I am looking at my little girl. . .

. . .and she is still here! 

Dave's text later said

Made me think about the "Angel of Death"
walking around up here.  
Don't know why I had that thought.
But I took comfort in knowing that he/she
laid her hand on Lily and said,
"Not just yet."

Not.  Just.  Yet.

I have no idea why Lily's life was spared and so many others' lives were not.  None of it makes sense.  None of it seems fair.

It's not.

I cannot help but feel that in that sparing, we have a responsibility.  I imagine that Angel of Death looking at us, her hand on Lily's little head, peacefully saying, "Not just yet.  Go live her story."

And boy, is it a story I love to live!

It's a story of life and love.  Hope and faith.  Courage.  And strength.  And growth.  A story of laughter...and tears...and worry.  And fight.

It is the story of Grace. The story of our Lily Grace.

Sunday, January 17, 2016

A Series of Fortunate Events

I'm going to take a trip back to about two, maybe three, weeks ago because I'm still trying to make sense of it all.

I had finally found our stethoscope.  The one I usually use on Lily when she isn't feeling so well.  It was outside because, well, we usually keep it in the costume container so the kids can play doctor, and I guess someone must have taken it outside.  When I brought it in and tried it out, it wasn't working.

So I asked Rani if she had one. . .since she's now a dental hygienist.  {Yeah!}  She did, and she told me she would bring it the next time she came to the house.

When she brought it, it was in a bag.  A bigger bag than what I expected.  I went to put it in a safe place (no more costume container), and after I got back, Rani told me that the bag had both a blood pressure cuff and the stethoscope, and I could only have the stethoscope.  So, I got out the bag that I thought was the stethoscope, and put it in the closet.  When I handed Rani the bag, she told me that it was actually in the other bag, so I had to switch bags.  It was quite the ordeal.

(Ok, I'm going to interject here and say that I SWEAR that I looked in one of the bags to verify that the stethoscope was in it because I had gone into that closet A LOT just to get the stethoscope bag in it.  This is important information for later...)

Fast forward to Saturday.  Dave had been working, and all the kids were with me.  Everything went as normal.  When he got home, I went to the store.  I was not gone for more than 30 minutes, but when I got back, Lily vomited.  Weird.  She had been fine all day.  And then she kept vomiting.  Dave thought that she had swallowed something.  We discontinued her formula and gave her water instead.  But she kept vomiting.

I stayed up with her until 1:00 Sunday morning. She was dry heaving by that time, so I assumed she had a stomach virus and went to bed. 

The next morning, when I woke up, she had some dried snot around her nose, so then I thought that maybe she just had a cold and the vomiting was her sensitive gag to sinus drainage.  She also had a fever.

The day went on, and I still believed that she had a cold.  By the time Dave got home and was sitting with her and holding her, he noticed that her breathing was in short, quick breaths, so we got the pulse ox out to measure her oxygen levels and heart rate.  Oxygen was in the 80s (she was snotty and asleep), and her heart rate was in the 180s.  Whoa!  We hadn't seen heart rate levels that high since her bowel obstruction, but I was thinking that she might just be dehydrated!  So I went to get the stethoscope, but the bag that I had put in the closet was the bag with the blood pressure cuff in it! What!?!

So Dave decided to put her in the shower to hopefully open up her airways.

When they got out, he was cuddling with her in bed.  I went up to check on her, and she was breathing so quickly--definitely more than one breath per second.  I put my head on her chest, but really couldn't hear anything.  Then I did a visual assessment of her body and noticed that as she breathed, her stomach stuck out.  Retraction!  (Lily breathes a little differently from our other children, so looking at her lungs/diaphragm area isn't always a good indication.  Luckily, I was looking at her from the side and noticed her stomach.)

We then decided that he would take her to the emergency room.  (Let me also interject that from the time that he got home to right before I noticed her retracting, Dave and I were talking about if we should take her to the ER or not.  It's always one of those things where you just never know.  Sometimes, it's ok to just wait until the next morning to take Lily to the doctor.  When we saw the retraction, we both knew what to do.)

Thank goodness we did not hesitate!  By 6:00 Monday morning, Lily was in the PICU coding and being intubated!

Now here's where the stethoscope comes into the more recent story.  I'll say that I am no professional when it comes to using a stethoscope, but it's pretty obvious when something is going on in the lungs.  The thing is, up until yesterday, LILY'S LUNGS HAVE SOUNDED CLEAR!  The doctors have heard NOTHING in her lungs!  They've seen plenty but heard nothing.

And that is pretty significant. 

Because if I had had that stethoscope, I would not have heard anything in Lily's lungs either.  And if I had not heard anything in her lungs, I might not have looked at her breathing.  I would have blamed it on a hot shower and being warm under the blankets.  And I might not have been adamant about Lily going to the hospital.  I just might have said that we could just wait until the morning to take Lily to the doctor.  And if I had done that, Lily might not be with us today.

The kids taking the stethoscope outside so that it wouldn't work anymore. . .

Me asking Rani for hers. . .

Not putting the right bag--the stethoscope bag--in the closet. . .

Not having a stethoscope to listen to Lily's lungs. . .

Being at an angle where I could see Lily's stomach as she breathed. . .

A series of fortunate events, indeed!

Friday, January 15, 2016

The Walking Dead and the Fight for Life

Lily is in the hospital.  And she is sick.  Three different viruses, sick.  Pneumonia on top of three different viruses, sick.  It was bad.  Real bad. 

But things are getting better.  Slowly.  Her numbers are better, and she's now beginning to breath spontaneously.  On her own.  Above the machine.

She's been ventilated since early Monday morning. 

But she is a fighter.  A Walking Dead fighter.

Yes, Dave and I watch The Walking Dead.  When it was on, I looked forward to watching it.  I think, even though I am grossed out by all of the violence, I am intrigued by the psychology behind it--that of the living.

Think about it.  There are millions of zombies out there and not many survivors.  Luckily, the zombie/survivor ratio isn't all that bad usually. . .until this season. . .but still.

Is there really, realistically, any hope of Rick and his gang ultimately surviving millions of zombies? I don't think so. Yet they hold out hope.  And they fight.  It's just in them to survive.

Every time I watch The Walking Dead and I think about that fight for survival--that inherent fight--I think about Lily and her fight.

She's been fighting since before she was born.  She's been given horrible odds, and yet she fights.

And I am intrigued.

Because here we have a little girl who, according to all the different tests out there, is cognitively around a 9 month old.  Yet here she has this deep-rooted, unstoppable fight for her life.  Even though Dave and I have encouraged her every step of the way to fight, who knows if she's understood it.  Even if she has, I think it's less for us and more for her.  She's doing it because it's a part of her.

We've seen it time and time again:  from her fight to make it to birth, to the fight to take a breath when she stopped breathing. . .three times.  The fight to soar above "failure to thrive."  Conquering the first round of RSV, a bowel obstruction, a diaphragmatic hernia. We see it during therapy, as she strives to push herself past where we thought she'd ever be.

And we saw it when she coded on Monday. . .twice.

We see it on a daily basis. 

Every second of every day, this little girl fights.  And we've said it time and time again:  as long as Lily fights, we will definitely fight for her.