Sunday Afternoon- September 19, 2010

This morning, Ben stayed with Lolly while my mom and I went to church at the hospital.  It's a really neat experience to come to church here (and not just because it's only 30 minutes long).  The room is full of doctors, nurses, parents and patients.  People come wearing dresses and suits, jeans and t-shirts, pajamas, hospital gowns and scrubs- all are welcome.  Most people there are carrying a very heavy burden, and you can see the weight of their worries carried on their shoulders.  

As we were singing the opening hymn, "Families Can Be Together Forever," I couldn't help but think how much more meaningful the words are after our week here.  I'm sure every person in the room was thinking the same thing- it really puts the gospel plan in perspective when you are faced with a serious health issue.  Several people walked by the room during the opening song.  The doors of the room were open, and I wondered if the people walking past would be drawn in just by the powerful, uplifting spirit in the room. 

We had a beautiful musical number- a piano solo of "Master, the Tempest is Raging."  I read the words as the pianist played, and was impressed at her choice of song- the second verse was a perfect description of our roller coaster with Lolly this week:

Master, with anguish of spirit

I bow in my grief today

The depths of my sad heart are troubled

Oh, waken and save, I pray!

Torrents of sin and of anguish

Sweep o'er my sinking soul

And I perish! I perish! dear Master

Oh, hasten, and take control

The winds and the waves obey Thy will

Peace, be still!

Whether the wrath of the storm tossed sea

Or demons or men, or whatever it be

No waters can swallow the ship where lies

The Master of ocean, and earth, and skies

They all shall sweetly obey Thy will

Peace, be still! Peace, be still!

They all shall sweetly obey Thy will

Peace, peace, be still!

As soon as we got out of church, Lolly was released from the PICU and headed to the "floor."

She had to have her art line removed in order to leave the PICU.  Since her platelet count is so low (it's in the teens- it should be in the hundreds), she doesn't clot well at all.  It took a lot of pressure to keep her bleeding under control (that's why she has the blue band wrapped around her wrist).

Lolly loves to twist and turn and flop all over her bed.  She gets all her leads and lines and blankets all twisted around her.  It's adorable.

My mom has been so wonderful with Sammi.  I'm so grateful that mom is here so that Sammi can be here with me.  Sammi has been the biggest blessing to us here- she is so cheerful and such a flirt.  She is such an easy, happy baby.  She's been the best sport about sleeping in the closet and having her schedule totally messed up.  She has giggled and laughed on our lowest days, and has been an absolute joy.

Another pedicure (thanks, Rachel, for the nail polish!):

When Ben is here, he doesn't leave Lolly's side.  When she was on the floor earlier this week, Ben stayed the night with her and stayed all day.  After several days, we finally sent him to the apartment for a nap.  While she was in the PICU, he stayed late every night and went early every morning.  He's so worried about his little girl.

We're so grateful for her thumb-sucking.  It has helped give her a lot of comfort.

This is how Lolly looks whenever the doctors come in (she tries to hide):

But whenever they ask if they can examine her, she usually says yes.

Adoring dad:

Peek-a-Boo!

It's been a good day for Lolly.  She has been changed from continuous dialysis to once-a-day dialysis.  Today, they took nearly a liter of extra fluid off during her three-hour treatment.  That is A LOT of fluid.  Her appearance totally changes over the course of her treatment- she starts out with a very puffy face, eyes and hands, and ends up looking much more like herself.

Other good news today- her platelet numbers and red blood cell count have both gone up, which means she will NOT need a transfusion tonight. 

To add to the good news, I finally got a piece of my favorite hospital treat:

YUM. YUM. YUM.

Also, Lolly's sweet nusery leader, Sister Osterhout, was passing through Salt Lake, and stopped to see Lolly and bring her a gift.  Lolly has the BEST nursery leaders, who really love her.  They have been wonderful.

Ben is headed back home for the week.  He will have a lot to do at the dairy to make up for all he missed this week at the dairy.

And the best news of the entire day (for Lolly at least)- she's been allowed to start drinking all her fluids (rather than get them through her NG tube).  Yesterday, her airway was somewhat restricted after being extubated (having her breathing tube removed)- her airway was swollen, so the doc wouldn't let her drink very much.  Today, she has been able to drink and drink (several tablespoons at at time rather than two teaspoons).  Lolly finally seems content now that her mouth isn't totally parched, and she has slept and slept and slept today.  I'm so happy for her that she feels good enough to finally rest.

Thank you for your continued support and prayers for our sweet Lolly.

Love, Robbie