Good check up today

We got a full work up today and then met with Willow's cardiologist.  

He agreed they were being safe this past weekend when they admitted us.  He also liked and preferred that, as do we (even though it was hard).  It gave them a chance to give her some new meds while being monitored, which was helpful.  She certainly responded; last night she slept so well, and she hasn't been grunting/groaning at all!

Willow's heart function looks good!  It's still difficult and slow for her heart to heal, since it has literally been cut and reconstructed.  It just takes time.  The fluid still seems to be just her little body trying to heal.  There aren't any heart function concerns at this point, and there aren't concerns about infection or anything else.  Little Willow just needs a lot of diuretics to help her body catch up!  We are trying to get the right mix for her going.  They are also carefully watching her blood levels for any side effects of those meds.  We go back again next week!

So grateful to see our girl comfortable again during sleep.  What a full day again!  It always is at Children's, even on days we think are going to be short and sweet!  

Pray for us please as we try to balance working with doctor appointments.  I think we had prepared ourselves well for the difficulties during and immediately after surgery.  Being readmitted this past weekend was something we hadn't particularly prepared for (obviously), and the rest of our lives are not on pause anymore, if that makes sense.  We would appreciate prayers for all of us as we continue to have frequent full day appointments as Willow heals.  We are so proud of our girl.  Today she was much less scared at the hospital doing various tests.  You go, girl!

Home again!

Grateful to walk into our home together and breathe a collective sigh of relief!

Today Willow enjoyed the playroom at the hospital, a therapy dog, & a better nap this afternoon than her entire night of (no) sleep last night!

We will have tests done tomorrow and will see our cardiologist as was previously scheduled.  

We added two prescriptions to the mix as well!

Thank God for people in our lives who help us (or are willing to help us) at the drop of a hat.  

So glad her x-ray this morning already looked better!  This is a marathon, not a sprint.  

Praising God for all the little graces in life today!

We are back in the hospital tonight.

They're being super careful, but they decided to admit us into the hospital tonight.  We are back on the 8th floor!  

The IV was the worst part.  Willow did the x-ray like a champ this time.  She's much more comfortable up here than in the ER room we were in.  Ugh, that was kind of rough.  Our sweet pediatrician was informed by nurses that we were being admitted and called to give us some words of encouragement.  That helped us over the rough patch!  Willow is currently sleeping.  Kyle ran home for some essentials he forgot to bring in the car.  

The reason we called in today was because Willow still grunts and struggles when she's sleeping.  She is kind of restless in between the grunts waking her up, so it's hard for her to get into a deeper sleep.  We waited for her nap today to see if we thought we should call, and then the on call doctor recommended we come in.  We were almost certain they'd send us home once we got all settled in the ER, but I think because it's a Sunday and her normal doctors aren't here, they'd rather be safe.  Of course, they didn't say that!  It's true; we need to get to the bottom of the issue!  

I'd rather be right here with Willow sleeping soundly (possibly because they gave the lasix intravenously??) than at home stressing out by her bed while she somewhat sleeps uncomfortably.  (Edit: that sleep was 45 minutes.  Very little sleep was had by any of us.)

Grateful to have eyes on my baby tonight.  Almost certain we will only be here one night!  

Yesterday we went on our first outing, out to dinner!  She was so cheerful about it.

 

Great check up today

Today we had an appointment, and the news is... that we got a good chest x-ray!!  No more pleural effusion.

Whew, I didn't realize how much I was holding my breath.  She still has a long way to go, as her surgery was very serious and it takes the body a while to catch up, they said.  She'll be on several meds for a while, and we still have various precautions.  She also had a suture poking out of the top of her scar, so they had to cut that out today.

We go back Tuesday for blood work and an echo to check heart function.  The hurried echo they did on Tuesday didn't give enough information.  

I could sense that it was rare that someone in her condition on this past Tuesday not be admitted to the hospital.  Thank God we weren't, and thank God for extra diuretics that allowed her discomfort and grunting with breathing to go away.  We were scared, and now we are not again.  That statement repeatedly summarizes this whole experience well.

The nurse told us about a Chinese child they're helping who has a heart defect and was adopted at the age of 9.  She said she heard our surgeon say, "He could've been a Willow."  The problem is that when kids are adopted at an older age with various heart defects, it significantly impacts their quality of life because they've not had any medical intervention before.  We are so blessed by all they've been able to give our daughter medically.  Much of that is because she had a surgery in China before we met her.  We know they couldn't have done it without the guidance and provision of God.  It's incredible to witness medical miracles happening before our eyes.

Statistics from a trusted resource:

Tonight Kyle said, "Willow, you went into surgery and came out cuter."  Willow cocked her head and said,"I know!"  Then she walked away.  That is the personality and fun we love so!  She's back!!!  We had such a nice little family night.  These nights are my absolute favorite.

A little scare; our hearts are full.

This morning we had our post op at Children's.  Kyle had meetings at work this afternoon, and I had my first day back with clients early this evening.  However, we still wanted to be there together, and I'm grateful we made that choice.

She didn't have a great chest x-ray today, and some of the levels in her blood were off.  They acted very calm about it, but shared that we needed to do an echo to make sure everything was alright.  They wanted to rule out any problems relating to her heart bleeding.  So after a blood draw, an x-ray, an EKG, blood pressure (surprisingly difficult) and other vitals, they swept us into an echo room unexpectedly.

Willow has only had one successful echo without sedation in the past, and it was with the 'baby whisperer' and Frozen.  Today she didn't have either, because apparently someone decided to steal the DVD from the hospital.  I didn't even have her pacifier!  So we laid in the bed together on our backs trying to watch Barney while she kicked and hit and screamed for half an hour, because it was vital that they get their questions answered regarding her heart.

Then we returned to the room waiting to hear from our doctors.  Our awesome cardiologist had been on the phone during the echo as he was very concerned about 'his Willow'.  

The news was good!  The echo told them that her heart is not bleeding.  If it had been, we would've been immediately readmitted.  Kyle had to leave, and they finished telling me about her new meds to help get the fluid off her chest.  

We got to the car, Willow immediately fell asleep, and I tried to shake the whole visit off.  I had a really hard time doing that; I had a hard time crying or thanking God she was well or thinking any clear thoughts.  Knowing that we barely escaped another traumatizing ordeal overwhelmed me.

So, tonight after Kyle and I both got home and we had dinner together, Willow perked up.  She is more than thrilled that the 'stickers' (steri-strips) are off of her chest.  She was delighted that we had told her it was a quick visit with no naps at the hospital, and it was.  She finally wanted to take a bath and didn't act scared.  She dramatically belted out 'The Sound of Music' during bath and nighttime after we heard it on Pandora (and I may have modeled the singing for her).  She delighted in wearing her new Ariel pajamas.  Kyle and I both got good night kisses from her for the first time in a long, long time.  

A bad day was redeemed and turned into a beautiful night.

There is no dawn without the darkness.  There is no joy or happiness without pain or sadness.  We are so grateful that her specific issues in healing are manageable ones.  Please continue to pray for quick healing for our girl!  We praise God today and every day, and I feel especially empathetic today toward those who DID receive the bad medical news.  May God strengthen & sustain us in times of need and in times of plenty.

"For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us." 

Romans 8:18 ESV

My favorite thing might be my mom's flag cake.

Kyle and I joke about how Willow has developed a new laugh post-surgery!  Here it is:

Chapstick is a serious source of great joy.

We got her a Cinderella dress, because we wanted to encourage her to walk around!

We spent the 4th with the Robinson family, and they brought sparklers!

You know she's doing well when she digs these out of my closet again...

She adores him!

There's that new laugh one more time!

  

Home sweet home

I think Kyle is going to post something soon, but for now it's only me again.

That smiling tuckered her out!  She didn't wake up very happy anytime she woke still at the hospital.  

As you can see, we finally got 'unplugged' from all of those machines yesterday afternoon!  We were waiting in our room to be dismissed, and a man from child life came to play guitar for us!  What a sweet memory.  He played 'The Wheels on the Bus.'  There need to be more people like him in the world.  Although Willow didn't want to show the love, she did stop whimpering to listen!

It was physically exhausting to go home for this sweet girl.  It was also good for my heart to hear her repeat, 'Home' after Kyle in the car.  She probably thought we were never returning, although we had told her we would.  What a confusing time for her.

Here we are!  Going home on Mimi's birthday was a treat!  It was faster than we expected.  She smiled while pretending to drive, one of her favorite activities with Daddy.

Pink toes and lips = great oxygen saturation!

Letting the puppies outside...

We have been blessed beyond measure by the thoughtfulness, encouragement, prayers, and generosity of so many.  It has all made an impact.  The practical things and toys for Willow are so kind and help us get back on our feet again.  They also kept us sane in the hospital.  The words of hope are treasures to me.  It's hard to find words to express our appreciation, so I will just say thank you if you're reading this and had a part in helping us out - tangibly, spiritually, or emotionally.  We feel very loved, and we don't take that for granted.

Willow has spurts of some energy, and then she has to do this.  We are happy to oblige.

The couch, the carpet, and the blankets in our living room all got some love from an exhausted Willow upon arriving home.  They felt good on her skin!

This morning we stayed in pajamas until lunchtime.  

And at last I see the light...

I took the blog title from one of Willow's favorite movies, Tangled.

Wow.  Things are moving along nicely on the 8th floor.  We even heard a rumor that if things continue to progress, we will be discharged tomorrow!

You get very accustomed to all of the machines being hooked up to your child (although in here they don't beep so much), so it will be different for us to not be able to glance up and see how her numbers are doing.  However, we couldn't be happier at the prospect of our home!  Home will be the best medicine for her at this point anyway!

All three of us slept all night long!  Not to be too dramatic, but let me just take a moment of silence to let that really sink in.  

Heavenly and blissful!

The nurse said Willow didn't wake up when she had to come in to check her.  We certainly didn't either, until x-rays early this morning.

Willow has to eat a little more (been super slow at it), go to the bathroom a little more, and have a little bit better chest x-ray, and then we can kiss this place goodbye.  We will come back soon for an appointment, but we won't be sleeping here anymore!!

Our girl even woke up with some grins for us, and we've seen a few more as the day has gone on.  She will smile a little and watch us, but she still doesn't want to talk or make choices (about food, toys, movies, etc) yet.  She did seem comforted today by being held by me, as she didn't want to get back in bed.  So that's the start of making choices!  Plus she keeps grinning at her funny daddy, the one who can always make her crack up.  Can't wait to hear that belly laugh!  It's not too far off anymore!

So, our spirits are lifted.  We feel like we are somewhat through the storm.  We pray together and sense the presence of God with us.  In the hardest and in the best times, He has been right here in our midst.  Grateful doesn't begin to describe it.

She kept smiling when we were making Sven talk to her.  "Give me a snack!"

We also went to the playroom this morning.  They had some really cool toys for her in the toddler corner.  She wanted to sit in a lap, and she played happily as we helped her figure out how to do the various toys.  She stood for just a minute with help when she saw the toy grocery cart!

Then again this afternoon by the train table.  I said, "Who is going in this tunnel?"  Willow held a train and said, "Me am!"  Yay for some words!