It has been a busy and fun day for sure! Little turned 14 today and woke up at 5:30 AM to tell me it was her birthday and ask about opening presents. Funny how circumstances play into the way we deal with things: she did the EXACT same thing last year and I was ticked off for being woken up. This year it was a welcome action because it was something normal in this season of strange and new.

When I finally gave in and turned the lights on to acknowledge the beginning of the day and we were greeted by this:

We were her only patient so our sweet night nurse made these letters and snuck in during the night to hang them up. (Multiple signs of a great nurse here: thoughtful and quiet!!! I never heard her and she had even told me she was going to do it! Three cheers for Nurse Claire.) From this moment on it was an onslaught of birthday cheer. Room service showed up with a special placemat and a stuffed animal on her tray. Everyone employed here who came by at any time said SOMETHING about her birthday. Balloons were delivered. Gifts were opened. The hospital sent a cake, ice cream, and a gift (a Hatchimal – long time desire of her heart) to our room! She talked on the phone to her Daddy and siblings, her grandparents and cousins, and an Aunt! She is exhausted.

For about an hour it felt like my birthday. . . my friend Erika came up from Colorado Springs and brought her four month old chunk of happiness.  It was such a joy to spend time with her, catch up on her life a touch, and talk about what’s happening here; it was heaven to hold that little man and kiss his face. (His expression here does not reflect his attitude during the rest of the visit.)

Oooh – and I got to go to Target. And they moved us to a private room with our own bathroom.

It was a good day. I almost forgot why we were here. Almost.

Our nurse today was sweetness personified. Just before she left for the night Littles feet turned the horrible shade of gray purple that I have become accustomed to seeing. Ellis’ laughing eyes turned very serious as she began massaging Little’s feet, checking other extremities, and elevating her legs. This change of intensity continued with a conversation about just how big Little’s heart is and how hard it is having to work to get blood to her feet. By the time the conversation was over a new heaviness had settled into my spirit. The last two hours have been filled with more anxiousness than the days before. Please pray for me to trust our Maker and His perfect plan for our daughter and family. Please pray that the peace that passes all understand would guard my heart and mind in Christ Jesus.

And sweet Jeremy is home with two sick siblings. It seems no one got sleep last night but instead chose to take turns throwing up. My husband is a jewel and cleaned the carpet. . . his deep appreciation for the carpet cleaner has caused him to make strong statements about future wedding presents we give. Hmmm. Please pray for rest for my husband; healing for the siblings; wisdom as Jeremy manages the house and his work.

Changes in Little: She was down 10lb. this morning and they have decreased the diuretic she is taking. Apparently there was concern about her kidneys yesterday but those are gone after the labs came back today. She didn’t wear an oxygen mask at all today and kept her strong coloring, but even now as she is falling asleep in front of me I see that her oxygenation level is dipping.  I expect to see the night nurse in the near future.

Thank you again for waiting and praying with us. Wanted to leave you with the precious prayer our friends’ almost-four year old prayed for Little:

“Dear God pweese make Yillee’s heart stay vewy big for all your wuv she shares. Pweese make it small for all da blood. Amen.”

Amen.