Thursday, November 28, 2013

This is What I am Thankful For

While I am thankful for many, many things, this is just one snippet of the evening that made  me smile:

Gabriel was sitting on his Grandpa's (my dad's) lap watching a movie this evening.  He started to get squirmy.

Grandpa (whispering):  Gabriel, do you need to go to the bathroom?

Gabriel (also whispering):  No.  It's just that my pants are stuck in my fanny.

Grandpa (still whispering):  Yeah.  That happens to me sometimes too.

I am thankful for little boys who will sit on their Grandpa's laps, and I am thankful for Grandpa's who not only open their lap to little boys, but who also commiserate with little boys and their problems.  

I am also thankful for turkey and sweet potatoes, but mostly for pie.

Saturday, November 23, 2013

The Tooth Chipmunk

Elizabeth got her 4 wisdom teeth taken out yesterday.  I have never had any dental work done except for cleaning, so I really don't know what she feels like, and I can't relate to what she's going through, but going by what she says, she was in a lot of pain yesterday, but today she feels much better.

But today she looks like a chipmunk.

And it is hilarious.

I guess that as her mom, I should not laugh at her.  And I tried not to.  I really did.  And I almost made it through the whole day without totally bursting out in fits of giggles, but then I cracked.

What happened was that for most of the day, I was doing my regular running around of kids to classes, trips to the hospital and running errands, so I was able to control myself by just not being around much, but by the end of the day, after the kids had gone to bed and we were just sitting around watching a movie, I found that I could barely contain myself.

It helped that the movie was a pretty intense one that had a few tear jerker scenes in it, but then, in the end, Elizabeth got up from her seat on the floor, and I got a glimpse of her from the side, and I seriously just couldn't take it anymore.

If I'd been drinking milk at the time, it would have shot out my nose.

Yes, it was one of those.  I was guffawing uncontrollably.

I made the cat run away and hide.

I made Jimmy tell me to 'Be quiet or you'll wake the babies!'

I threw myself into a coughing fit that almost made me lose my dinner.

And I felt horrible about laughing at her, but I just couldn't stop.  

And really, Elizabeth herself admitted that she looks pretty silly and she did join in a bit, and Jimmy's no saint in this one, either, so it's not like I was by myself in this.

But what I realized was that I had not laughed like that in ages.  I mean really belly laughed.  You know, belted it out and let 'er rip.

And oh, it was so therapeutic!

I have dealt with anger that has cracked and broken me and tears that have drained and washed me but this?  This was the laughter that filled and patched me.

And so I must say,

Thank you, Elizabeth.  Thank you for being you and letting me laugh at the situation.  You are an amazing and beautiful girl, and you will return to your full beauty in just a few more days.  I appreciate you being willing to let me snicker at your plight because it felt oh, so very good in so many ways not the least of which was that I knew that I could  giggle at you without offending you because you are strong and smart and firm in your beliefs of who and what you are

and that we love you

chipmunk cheeks and all.

What Hazel's Up To

I have not written about Hazel Grace for a while.  It seems that I don't really have time to sit and type on the computer, and when I do have a little time, I find that I can't formulate my thoughts into anything that is coherent or worthy of my Hazel Grace.

But I know that there are many people out there wondering what my sweet baby Hazel Grace is up to, so even though it is after midnight and I just got home from the hospital, I will fill you in.

Because you care

and because I care that you care

and because I firmly believe that Hazel is where she is because of your caring

and your prayers.

Hazel Grace is now on nasal cannula.  She is off the vapo-therm, and just has the nubbins in her nose that are connected directly to the air supply coming from the wall of her room.  She is on a flow of 2 liters per minute.  She started on the vapo-therm at 6 liters/min, and in the last week and a half, she has weaned down to just 2 liters (and off the vapo-therm).

This is incredibly exciting and encouraging to us!  This is a HUGE step on her way to getting home!

She also started PO feeding (bottle feeding) on Monday.  She started at just one feeding of 50mls of fortified breastmilk by mouth a shift (that would equal once every 12 hours) and all the rest of the feedings by tube but has now graduated to 3 PO feedings a day (one PO feeding to 2 tube feedings).  I just gave her a bottle at 9PM, and she took the whole thing famously.  She is on a slow flow nipple, and still has some desats (where her oxygen saturation goes down) and brady's (where her heart rate dips) while she's feeding, but she is still considered to be doing really well.

In order to come home, she has to take all of her feedings orally and she has to get completely off the breathing support.  If she doesn't do those 2 things, then we have to look at other options, like bringing her home with an oxygen tank and/or bringing her home with a G-tube (a feeding tube that goes directly into her stomach, not through her nose).  But most likely, if she does need one or both of those things, they will be only temporarily until she gets a little bigger and has more stamina.  She will always have chronic lung disease, but her lungs will grow and will most likely be able to support her with minimal difficulties in the future, and so far it seems that there are no issues with eating other than just having the stamina to feed long enough to take in all the milk before wearing herself out.  She doesn't seem to have any oral aversions or oral issues, which is surprising since she was intubated for so long.  The only thing that she does have is a deep groove in her palate, but it doesn't seem to be interfering with her eating, and the dentist said that it should resolve on its own or at least not cause any issues down the road.

Speaking of the dentist, Elizabeth got all 4 of her wisdom teeth taken out today!  They were all 4 impacted (I thought that meant they were growing in wrong, but what it actually just means is that they are under the gum still, so yes, they were impacted), so it was quite the experience to get them out, but she is recovering well.

And on the school front, I am proud to say that Jo is turning into quite the reader!  Some switch flipped and she just realized that it's really cool to be able to read big books, and also that there is a lot of really fun stuff in books and if she can read them on her own, then she can do it whenever she wants to!  I had borrowed The Indian in the Cupboard from the library on CD to listen to in the car, and she got really into it.  I reminded her that it was also a book in print, so when we went back to the library, she went up to the librarian and asked where she could find it.  When they didn't have a copy of it, she came and got the card and put it on hold...all by herself!  I was in the kids' room with the babies, and I had just sent her out to choose her books and she came back to tell me that she had gotten the book put on hold for her and would I please pick it up when it comes in.  Well, of course I will!  Yay for Jo!

And, while I'm listing details, I must say that Jesse's vocabulary is growing by leaps and bounds (so be careful what you say around him!) and also, I think it must have been by mistake, but he ate a piece of an apple!  We were at the Farmers' Market and I was handing him bread samples and then I just passed him an apple slice, too, and he ate it!  That is HUGE for him.  It has been impossible to get him to eat ANYTHING at all for months now.  I hope we are turning the page on the food issues with him!

And to not leave him out, Gabriel is hanging in there.  He's taking the whole Hazel experience pretty hard and is now having a difficult time separating from Jimmy and me to go to his class at church or basically to do anything, but he's doing ok.  Today I was putting together a mobile to take in to Hazel for her crib and he was helping me.  'Is this for Baby Hazel?' he asked.  'Yep' I said.  'Well, when's she coming?'  'She's not, sweetie, I'm taking it to her.'  'I know, Mom, but when's she coming?  When is Baby Hazel coming home?'

'I don't know, big guy, I don't know.  But I hope it's soon.'

'Yeah, me too.  I miss Baby Hazel.'

I know, my love, we all do.

Thursday, November 21, 2013

National Prematurity Awareness Month

There are some things that I never expected in life.

I never thought that I would be a stay at home, homeschooling mom.  I never thought that I would have 5 children. I never thought that I would live in Hawaii for a time or have friends in France or Russia or that my brother would marry a latina woman...or marry at all, for that matter...I never thought that my mother would battle and survive breast cancer, I never thought that I would still be in the same house 8 years (and 4 more kids) after we realized that we just aren't going to fit in this house

and I never thought that I would have the telephone number for Children's Hospital's NICU on speed dial on my cell phone.

I never thought I would have a premature baby.  That was for other people.  You know, people who were...well, not me.  I  never even really knew anyone who had a premature baby, and I certainly never expected any of my babies to come early.

But sweet baby Hazel Grace did, and now we are travelling that road together.

And Hazel Grace is doing well, she is thriving and getting bigger and more beautiful every day.  She is sweet and feisty and patient and demanding all in the same the same minute it seems sometimes!

And that is exactly what she needs to be and who she needs to be.

Anyway, November is National Prematurity Awareness Month, and so I jotted down some thoughts that I had about our sweet baby Hazel Grace that I thought would apply to all the tiny babies that share her floor at Children's Hospital in DC and that share our experience all around the US and the world:

Don't be afraid

I may not be at all what you expected
but I am exactly what I am meant to be.

I am a preemie.

I will always be your precious baby
But I will forge my own identity.

I'm sleeping now but I can feel you hovering over me,

Don't be afraid.
I am stronger than you think.

I am tiny
But I am mighty.

There is nothing in this world that can compare
To what you and I will go through together
Behind the doors of this privileged place
Because I am
And always will be
Your preemie.

Wednesday, November 6, 2013


Ninety-eight days later, 14 weeks after August 1, the day that our sweet baby Hazel Grace joined us, I sit here on the couch, watching my milk splash into the bottle to the rhythm the pump pulsing away beside me,

I realize just how far we've come.

Last night, Jimmy sat in the chair in the NICU at Children's Hospital holding his daughter for the second time in her life.  She was snug, wrapped in her blankets in the crook of his arm.  She was sleeping peacefully as the little nubbins in her nose provide her with a steady flow of oxygen.

He is protective of her and tells me

Don't touch

Stop moving

Don't talk so loud...You're bothering her!

And I look over his shoulder at her sleeping form and marvel at how we worry now about sound and movement disturbing her slumber when only 4 days ago, it was tubes and needles that disrupted her sleep and pained her body.

Hazel Grace was extubated on Saturday, November 2.

Yes, just this past Saturday, Jimmy and I hurried to the hospital, jittery as first time parents.  We rushed into sweet baby Hazel Grace's room and stood by, holding hands, Jimmy's sweaty, mine cold, while the team of nurses prepped the equipment...

everything that Hazel could possibly need for a successful extubation was sterilized and laid out at the ready.  The nurses, of course, have done this before, but for us, this was all new...

like a new birth.

I moved to the bed and put my hands on my baby, steadying her head and controlling her tiny waving hands so that the tubes could be untaped from her face and, for the first time in almost 13 weeks, slid out from her chest and throat.

And then we heard it.

The sound that every parents waits for in the delivery room...

The sound that we have been waiting months to hear...

The sound of our sweet baby Hazel's cry.

I had to turn away.  I had to relinquish my position by her bed because even though she was the one crying, my tears were falling

and I reached for Jimmy and found him reaching for me, too.

And my scar throbbed to the sound of her wailing...the scar that was cut into my flesh to bring her here into this world,

the scar that was waiting for this sound, the sound of my baby's cry, to fully heal.

And the tears that fell from our eyes, Jimmy's and mine, were tears that were an overflow from the heart

And it doesn't mean that she's well, it doesn't mean that we bring the carseat in to pack her up and take her home,

but it does mean that God is good and that He hears our prayers and He grants healing both to lungs and to scars and to hearts

and it also means that she has nubbins in her nose and a tube for milk to her tummy

which makes her still be the cutest baby ever created

and which also means that she can be held by her daddy

now in his arms, later on his knee, sometimes on his back,

but always in his heart.


Monday, November 4, 2013

The Transfer

I wrote this last week on Wednesday, October 30, but didn't get a chance to post it.  I wanted to still post it now, even though things have changed so much, because I want to always remember this...who I was, who I am, and what we have gone through together.  Because after all, isn't that what makes us a family?

It's like starting over...the opening of a not so old wound.  The pain is deep and unexpected and the sharpness of it takes your breath away and leaves you standing there, leaning on the edge of the plexiglass bed clutching a little pink weight chart.

The transfer.

My sweet baby Hazel Grace has been transferred.  Sweet Hazel has moved from the comfort of Alexandria Hospital which is a mere 15 minutes away to Children's Hospital which, from our door to Hazel's bed, is at least an hour on a good day.

But the thing is that it's not just the drive from here to there, it's the whole newness of it all.

Everything is different at Children's.  Everything.  From the way they tape the tubes to her mouth to the size of diaper that she's wearing and the timing of the feedings and meds and the type of bottles and pumps they have available.  Every last thing is different.  Even the way they orient her in her bed is different.

Not that different is bad, it's just...well...different.

I look around and nothing is familiar.  The nurses, the doctors...everyone is new.  I don't know them, and they don't know me.  Better yet, they don't know Hazel.

And yet, I have to get in my car and drive off.  Way off.  And I have to leave my sweet baby Hazel Grace alone with a whole new set of strangers in a whole new strange place.  And these strangers will spend more time with my baby than I will.

And that breaks my heart.

How can I drive away when she needs me most?  Who will tell them that she likes to sleep on her left side?  who will let them know that she doesn't like her feet wrapped up but she likes to sleep with her little blanket over her head?

Who will 'hear' her when she cries?

Hazel Grace has a private room which means that even though all of her alarms are sent directly to her nurse's pager, she is not in eyesight of anyone most of the time.  So, when she's upset, and her little eyebrows squinch together and her mouth opens way up and the tiny tears come into her little eyes as the silent cry comes out,

who will be there for her?

Who will pat her back and who will hold her hands and who will comfort her and will she think...

Where's my mom?  And why isn't she here for me?

But I have no choice.  I have to leave.

So I take my heart, beating and raw, and I wrap it up right there next to her.

And if I could, I'd give her, my lungs, full of air, and take hers with all their tubes.

But I can't.  So all I can do is leave my heart and drive away, snaking my way through the city to our house so very far away

and if you ever wonder just how far the heart strings can stretch, just how many turns and tunnels you can take before they snap

Just let me tell you that they can stretch.  It will hurt, and the pain is real, but they can stretch.

I can leave my heart there with her, my sweet baby Hazel Grace, and I can come home.

And I can love my kids and hug my husband while my heart's still wrapped up there with my Hazel Grace.

Because the pull of those strings, the pull of my body wanting to reunite with my heart, is the pull that gets me up in the morning and the pull that drags me through the day until I can retrace the route to the crib where my heart lies, waiting for my return.