Post op

Just before Ellie's cast change this morning, she crashed for a very early nap on my shoulder...

perhaps because she was awake most of the night.

Post -op in recovery...

both my babies wake up from anesthesia ANGRY!

I sang, we medicated, I sang more, I tried to nurse, I bounced, I rocked, I squatted (I'm hurting but hope it pays off by the summer - squats seem to comfort her & with spica on, it's like doing them with weights), I sang lullabies, I sang hymns, I sang the doxology, I took her picture, I kissed her, 

& finally, 

finally the codeine kicked in (or maybe it was my singing) & she relaxed and ate.

Which was good for all of us as I hadn't fed her all night & I forgot  a piece to my pump so I wasn't able to pump this morning (I couldn't feed her due to anesthesia - she wasn't allowed anything)...

so - needless to say, (or perhaps tmi), I was ready for my girl to eat.

And her sweet nurse got her to me as quickly as possible!

Poor, poor baby, she just looks pitiful here:

(I texted this picture to my mom from recovery & Will saw it on her phone & said to her, "Baby Ellie is crying, Lovie.  We need to get her a pirate ship!"  

Sweet big brother.

Ellie's surgeon is very pleased with her hip surgery progress.  He said it was stiff (understandably, it's been in a body cast for 6 weeks) but with some manipulation he was able to get it to move.  

He also said that the cast was clean (a miracle - it was definitely stained with diarrhea but YAHOOOO - thanks to all you cast coolers & diaper preppers who have done so much to help with this body cast experience.

I showed them the cast cooler & they were amazed.  I highly recommend it to anyone in a cast (www.castcooler.com)

I was worried they were get on to me & tell me I was a neglectful mom for having diarrhea stains on the cast... I was so thankful it came out okay.

Also, I thought I had seen a bit of a diaper rash while peering down the cast with my handy flashlight but the doctors said her skin was great - no skin breakdown at all!

She is in a new body cast (spica.)  It comes up even higher than her previous one which is a pain.  It is also a bit tighter... I can't stick my hand down very far in the back which is too bad because that always comforted her.  They also put her legs in a slightly different position and it is a bit more difficult to hold her.  My arm keeps falling asleep - her legs are spread out really far & so it is just awkward.  This new cast also seems heavier & her legs are thicker with more cast material.  When I dressed her in a little spring bubble, I noticed I couldn't snap it closed so we'll be sticking to only dresses now.  

I've been crying a lot today as she is just soaking through her clothes & sheets with sweat.  They added a gore tex liner to this cast & so far I hate it.  (Probably because I hate change & thought I finally had a decent system down.)  The cast cooler isn't working too well with the gore tex & it makes her so very hot.  ARRRRG.

I've got a call into the hospital to see how to manage this new change.  

4 more weeks... we can do it.

It comes off on Good Friday - just in time for Easter & her Easter dress!

I am so thankful.

And tired.

And frustrated as I try to learn a new system.

We stayed at Ronald McDonald House last night for the first time.  We live much closer to Dallas now but with an appointment at 6:30 am & a party last night honoring Will & other patient champions at the hospital (pics to come), we drove up yesterday.  

Will kept calling the RMHouse "Old McDonald's House."

It's a beautiful facility - Austin stone & slate floors and a big courtyard & a playground & playroom & big leather couches.... like a Hill Country resort.

But no laughter.  No smiles.  No one sitting in the couches relaxing or reading a book.  

In some ways, I felt very comfortable there.  Every other mom I saw looked tired too.  We are all dealing with challenging medical conditions - many long term.  There is an unspoken sense of understanding - we're in the same world that is moving so differently from the world of the rest of our friends and families...the world we used to be a part of.

But there was a heaviness and a sadness too. It's interesting  - I spend a lot of time at children's hospitals & especially at Scottish Rite.  I would say that generally, at Scottish Rite, I sense hope and there is laughter there.  At RMH, it just felt heavy and sad.  Will made friends with a little boy in the playroom who was missing an eye and appeared to be getting chemo.  My mom was briefly visiting with a man in our hallway and when she asked how he was, he honestly replied, "I'm surviving."

I think that pretty much sums it up.

It is a beautiful place and it offers a sense of place and home and somewhere to shower and eat and regroup before keeping vigil at a child's bedside.

But it is full of survivors.  

I was thankful to be able to stay there & will likely use it again - especially on days when both kids have multiple appointments and I just need somewhere to put someone down for a quick nap.  It's just that it is a reminder of the immense struggles so many families face.

The drive home was beautiful.  I could barely keep my eyes open but loved seeing wild wisteria along the road:

(it smelled divine & this picture with my phone does not do it justice - so many big bunches of purple flowers - just beautiful)

and canopies of trees just beginning to bud

(as a side note, I remember after R & I had been dating for awhile, we would drive under a similar canopy of trees & I would always hope & pray he would declare he loved me because it just seemed so pretty.  He eventually did tell me but it wasn't under a canopy of trees on a lonely road.)

Fields & fields of yellow flowers & lots of teeny baby calves

and beautiful white dogwood trees peeking out from the woods at every corner.  Just such a pretty drive.

It was nice to be home in time for afternoon naps & time to play outside with Will & have family dinner.

But, I am tired.  Not so much from the day - although being at a hospital at 6:30am with a baby for a procedure is exhausting...

more just from overwhelm with life I think.

I love my babies and I love our life.

Mentally, I keep going through my priorities and thinking about what things in our life are extraneous...

I want to simplify because I know I can not do it all.

My kids' care is obviously the most important to me and it requires a lot of me.  I went through the calendar with the appointment people today at the hospital & we'll be starting Will's next set of prosthetics soon & Ellie will be back to her every 10 day visits soon and it's just a lot...

and they will face challenges for life.

And I'm researching some things for Will that I've noticed he struggles with -

I was sharing with my mom today that Will does every single thing he wants to.  He is fully functional.  I am confident that Ellie too will be functional.

It's just that it is so tiring getting there.

So many things that I would otherwise take for granted, for us require an extra dose of creativity (how will he pull on underwear, how to feed himself, how to zip pants, how to do every single thing), sometimes require some modification or adjustment, & often require more work.

He figures it out.

It's just that getting there - for everything - is tiring.

And I'm tired.

And headed to do cast care & to bed.