Word on the third floor is that we are going home tomorrow! If you just yelled, “WHAT?!?” then you did exactly what I did. Apparently Little is doing “extremely well” and everything they are doing here is now stuff I can do at home, so home it is.

They did another echocardiogram today and the doctor said that to her naked eye she couldn’t tell that Little’s heart was much better but she could tell it definitely wasn’t worse. . . so there’s that. They have her medication worked out to a good place … so there’s that. There is still no ’cause that we are aware of, no promise that it will heal, and no reason we should expect it to get worse.  This would be the place to make a joke about  doctors not knowing much, BUT the truth is that these doctors have helped our little girl tremendously over the past four days and that’s because of  what they DO KNOW . . . so there’s that.

We may not know why and how but that’s nothing new when it comes to Little. With Little we have learned the importance of living in what we do know: we do know to pray because He hears and acts. We do know to trust because He knows the whole picture. We do know to watch for His hand at work because He does amazing things around in through our Little.

Our firstborn is special and I have always asked God to use her wherever she is as a light for Him; that lives would be different because they met her. We have seen that in our short stay here and pray that it will continue over the months of outpatient follow-up visits we will have. Some of things we have heard said are:
“I am going to do an echocardiogram, Little and you will be able to see your heart on this screen.” . . . . “God made my heart. I am going to see what it looks like.”

“I love coming to your room to see you, Little. I just love talking to you.”

“I am so glad I got to be your nurse, Little.”

“I see on your chart that your middle name is Joy – that is just the perfect name for you Little.  You seem full of joy.” (Her reply was, “I AM.”)

As we go home we ask you to continue to pray that Little’s heart will return to its original size and strength. Please ask the Father to give Becky patience, wisdom, discernment and faith during the transition and the ability to retain information we new skills must be learned and a new layer of care much be applied. Please lift up Jeremy for those same things and ask the Lord that these new changes would grow the siblings into more loving, caring, and empathetic people instead of bitter, angry, and selfish.

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.

We are wrapping up day 2 at Children’s Hospital and I have received more than one message asking me for an update on Little’s Big Heart.  On one hand it is such a blessing to realize the love of the Body and the joy of prayers on your behalf.  On the other hand it is so hard when so much has remained unchanged since yesterday.  SO, I am going to try to turn “we sat in the hospital and waited for Little to dispel fluids” into something fun and exciting to read; the important stuff is bolded.

* We both slept last night which is a true blessing * I finally got to take a shower this morning and it changed my view on life * I was given the responsibility of calling in Little’s breakfast choices and I spent the rest of the day mastering the art of strategic ordering. . . maximizing her one entrée, three sides, and a beverage to feed the both of us three times today * Blood was drawn by two Sarahs who now have my devotion because they didn’t make my daughter cry * Little has had to wear an oxygen mask through last night and today because her lungs just haven’t had the room to inflate. She hated the little prongs that go into your nose and so they switched her to the mask and that’s worked much better * The day nurse showed up in Texas Longhorn scrubs and I had an emotional reaction (Jen Allen) * Multiple doctors came by to listen through a stethoscope and press on Little’s tummy— Said doctors conferred and came to the conclusion that little had changed with Little and we would continue with the previously prescribed plan * Friends showed up for a visit. They brought my van so we now have a way home when they let us go.— We prayed together for Little’s healing—After praying we talked and laughed — We (I) got in trouble with the neighbor nurse for being too loud * Little was transferred from the CICU to the CPCU (Cardiac Progressive Care Unit) for the duration of our stay (NOT because I was loud! This transfer was already planned before my transgression.) * Our new room is across the hall from the shower * After being pale and barely speaking all day, Little got color in her cheeks and began asking every nurse their age— she’s back, folks * The new room has an Xbox and you can check out games downstairs, there are movies to check out, and a library— Little thinks being in the hospital rocks * We got to FaceTime with Daddy and the sibs * Little didn’t throw up all day — She wasn’t super hungry but she did eat which is a switch from the last few days. * KB did throw up today * Our previous nurse is 38 and our present nurse, Claire, is 25. *

Previously Prescribed Plan — The doctors are giving Little a diuretic to help flush all the fluid from her body cavity. It’s working – she had already lost 4-5 lbs. this morning when they weighed her. They have also begun giving her a medicine to lower her blood pressure so that it is easier for her heart to get good strong pumps. The heart is large because of the fluid and blood that it’s been unable to dispel because it is weak. The hope is that as the fluid is removed from around the outside of the heart there will be more room for the heart to fully relax between “squeezes” and with the help of the lower blood pressure the hearts strength will return allowing the blood and fluid to be pushed out of the heart.

There are no obvious causes that are evident at this point and no clear picture of how this will play out. And so we wait.

If you were to come see Little right now she would look like she normally does on the outside but the inside is still sick.  We continue to pray for our Little’s Big Heart.