June 8, 2015

Home Again, Home Again, Jiggity Jig.

Hey y'all.  Remember this?  It was June 9. 2011.  We had been in the hospital for 78 Days.  I had raging mastitis, a crazy high fever and was totally beyond exhausted (and more than a little scared).  It was a wonderful day.

And here we are.  June 8, 2015.  Five days doesn't hold a candle to 78, but if that was a marathon, this was a sprint. (And let's be perfectly honest, I don't care for running of any sort.)  I have no mastitis, but I am totally beyond exhausted.  It is a wonderful day.

Thanks Be To God.

June 7, 2015


Healing is often a two steps forward, one step back dance and that's how the first part of today felt. Clara woke in very high spirits and eager to get out of bed and play. We made a couple trips to the rooftop playground and enjoyed a very fun visit from Mama K. She played some Hungry Hungry Hippos, got her fingernails painted, read some books, looked at her newest magazine, watched some movies, tried out some parts of the playground, even tentatively went down the slide.  She was still walking a little gingerly, still a little off-balance, but definitely wanting to be more active.  Unfortunately, around lunchtime we lost her IV which was pretty painful in and of itself, but also put her behind on pain meds and unfortunately led to nearly two hours of trying to get another IV placed. There was lots of sticking and digging and tears and pain. I know it was hard for her and the grownups were struggling to keep tears back too. With providential timing, just as we were finishing the IV, she got a special teddy bear and balloon delivery from the gift shop from a dear friend.  Brightened her right up.  Once we got through that trauma, she took a very long nap and woke with the sweetest little disposition. We had a couple of visitors this afternoon which was a good distraction for her. The afternoon and evening were a series of steps and sometimes bounds in the right direction.  She had lots of fun playing with the bubble gun she got as a gift from Ms. Bri, she was out of bed a lot, walking with more confidence.... tonight we even found ourselves saying, "SLOW DOWN!"  She's eating and drinking more and more and I think we will probably ask to try to get that IV out tomorrow morning and see if she'll drink enough to maintain.  She even pooped tonight.  I do not think that home is too far off. 

Thanks for your continued love and prayers.  

June 6, 2015

Hospital Legs

Those of you who have been through this surgery before told me that the first 24 hours would be wicked, but that even by the second 24 hours there would be significant and noticeable improvement.  I should have believed you, but if you had told me last night at 10:30PM that Clara would have had the day that she had today, I would never have believed you.

She woke up this morning after a night of really low sats despite 1.5 liters of oxygen and a fitful, painful, upset sleep.  She ripped those nasal cannulas right off and hasn't had to look back at all from a respiratory standpoint. Her pain was still a little rocky this morning, but we stopped her morphine and switched to a scheduled oral lortab to go with her scheduled IV toradol and that has been the magic pain combination to keep her happy.  Looking back, I know we needed that morphine, but I think it also made her feel crummy in a lot of ways.  She also had a pretty distended tummy this morning from gas.  We did a glycerin suppository, but she still hasn't had a bowel movement, so we'll keep working on eating and drinking more to get things moving in that department.   After a good morning nap and a little food to eat, we loaded Clara up for the first time in the wagon (or the "bear chair").  She was very resistant, but once we got going, she seemed to really enjoy herself.  There's a nice rooftop playground and terrace on the 12th floor, so we went there and got a little fresh air and watched a few other kids play.  Then we came back down, gave her a sponge bath and clean gown to go with her clean bedding and got her settled in for an afternoon nap.  She rested very comfortably this afternoon, so I ran home to nurse Eloise and see her a short bit.  She was still sleeping when I got back a little after 3:00 and woke again around 4:00.  We did an x-ray to check and make sure that her tummy pain was just gas as we expected and her colon is very dilated, so hopefully that will continue working itself out and she'll get more and more comfortable.  Her appetite was not quite as good this afternoon and we were a little late getting her the toradol and we could tell.  She had some chill time in her bed, reading and watching movies and letting her Daddy make balloon animals for her.  And once her meds were back in her system, we loaded her up again for wagon ride #2 (this time with Daddy).  Back to the rooftop terrace and a little stroll around the hospital.  We got back to the room about 7PM and she sat upright in a chair for the first time for a few minutes while I attempted to fix her hair.  It's going to take a lot of conditioner to undo that mess in a few days!  After some time dangling her feet in the chair and before she headed back to bed, she stood for the first time.  It was only about 5 seconds and I think it was both a little painful and a little fearful, but she did it.  I headed back home once more to get Eloise settled for the night and thought that Clara's work for the day was done, but when I got back to the hospital a little before 9, she said she was ready for another ride.  This time she took a few steps from her bed to get into the bear chair and after our stroll walked about ten feet with only a little support to get back in her bed.  I am, onc again, stunned.  She has shown improvement nearly every hour of the day.  There is still pain, we still have to get her eating and drinking better, we still would like to see some poop.  But her spirit was back today and there is great hope in seeing how much progress she has made in the past day.  Yesterday I hoped for brighter eyes, less pain, and stronger breathing.  We got all of that and more today.

I have also felt today like I've gotten my "hospital legs" back a little more.  It's hard to believe that it's been four years since this was our home and our routines revolved around shift changes and med schedules.  There's a strange almost muscle memory to being back in this place again and while it felt kind of stiff and dream-like at first, today I felt like I was back in the rhythm again.  It's like my car can autopilot through the parking deck, grabbing the ticket and zooming into my standard spot.  My feet carry me mindlessly to the elevator and through the hallways.  My eyes are naturally glancing at her numbers on the monitor and processing what they mean.  My mind is thinking about her med schedule and setting mini-goals for parts of the day, balancing her pain needs, nutritional needs, and other concerns.  All these habits were like second nature for so long... I'm so very thankful that I won't need these hospital legs for more than a few days this time, but it's a strange experience to feel myself settling into that role as parent, advocate, and caregiver all over again.  We've had great staff taking care of us and it's been really wonderful to connect with some of our old hospital friends who have come and checked on us, too.  No one ever wants their child to be in a hospital, and not a minute longer than necessary, but this place is special to us and we are grateful for it.

Tomorrow we hope to really get her eating and drinking a lot more.  We can't pull that IV until she's consuming a lot more orally.  We'll also try to help her spend some more time on her feet and building her physical strength and endurance.  There's a great playroom on this floor that she's excited to try.  She's passed gas today, so things are beginning to move, but a poop would be bonus for tomorrow.  Folks have asked when we'll go home and there's really no way to know quite yet because we have to let her set the pace.  But my guess right now would be maybe Monday.

Here are some pictures of Clara wow-ing us all today with her progress:

Morning Lion King Viewing (1 of 284 today):

Our first wagon ride!:


Playing the giant music box with her toe:

Watching the lights on the 7th floor through the windows...

What I came back to after my afternoon Eloise break:

More movie.

Balloon animals by Daddy.  This bee was his masterpiece.

Resting in her bed (see her little poster behind her?... pictures and description of "healthy" Clara for all the staff who might wonder what she's like when she's not quite so pitiful.

 Bear Chair #2:

Sitting upright, checking out her incisions...

 First time standing.  A few tears, but she did great.

 Mermaid prize for her hard work today:

Clara found her legs and I found mine.  I can kind of start to believe you all now when you say, "She'll just keep getting better and better."  She sure is.

Thanks be to God.

What a Circus!

While I have a captive audience of folks back at this blog who probably abandoned it many months ago when my life got a little too out of control to keep it updated, and while Clara is peacefully napping (ALLELUIAH!), I thought I'd tackle part of the summer to do list and try to catch up on the blog.  I should start where I left off, but that would be CHRISTMAS, and so instead, I'm going to break my rules and go all out of order.   I'll begin with photos from Eloise's first birthday party which was the day before Clara got sick and our lives got turned a little upside down.  It was only two weeks ago, but it already feels like it was an eternity!

I feel like I should preface this birthday post with a little disclaimer.  There's a lot of buzz in the blogosphere about how Pinterest puts all this pressure on moms to have these elaborate themed birthdays and it's too much and over the top and blah blah blah.  Here's my take on it.  I love birthday parties.  Really really really love them.  I pick a theme months in advance and think about it and look for ideas and shop and just have so much fun.  I think it's maybe filling the void in my life from no longer being in the kindergarten classroom.  I get a kick out of it.  So, I do it!  But if you don't like it, I do not think you should do it.  Know what I don't do?  Eat organic.  Make homemade soap.  Bake or decorate cakes.  I am not good at those things and I do not enjoy them and I do not feel any guilt or pressure to do them because they do not bring me joy.  But this.  This brings me joy.  And Eloise's party was so much fun.

When I was trying to think of a theme for her, I was playing around with Elephants since we've always been kind of drawn to Elephant themed stuff for her.  Which made me think of circuses and I realized that a circus theme was kind of perfect for a first birthday, because let's be honest, the first year is nothing but a three ring circus!  Eloise has been the world's best baby (more on that in her one year post), but adjusting to life with two kids and sleepless nights and general chaos that ensues with a baby made circus feel like the perfect theme.  

And with all that said, here's the circus party!!

The food, table and favors were concessions themed:


And then I set up 7 different circus stations. (I got better photos of some than others; it's hard to party and document all at once.)

There was the STRONG (WO)MAN:




TATOO PARLOR (With Circus tattoos, of course):


 BIG TOP PARACHUTE: (Here's the best wide view of the backyard that I got)


 Robert grilled out burgers for us and we ate.


Eloise got to smash another cake (again, we're all out of order here... I'll post pics of her "real" birthday later).  Big thanks to Mama K for baking our cakes.  {See above: I do not bake cakes}

And after Eloise got a bath and a wardrobe change, she opened a few presents.

These are my people.  I love them fiercly and could not have gotten through the past circus of a year without them.

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