Progress

What a difference 12 hours makes.  This morning Jadelyn was still experiencing anesthesia induced nausea, some pain and dealing with all the frustrating tubes and wires.  This evening she was head bobbing, with lips pursed, and body dancing (laying down and barely moving, but body dancing none the less) while the boys sang her "The Little Drummer Boy" over the phone.  I know it's not Christmas anymore but she still loves that song and asks for it frequently. If she wasn't so still she would be her completely normal self, peppy, chatty and full of questions.  She ate chicken tenders, grapes and yogurt for supper.

Progress steps today:  pulled chest tube and Folley catheter.  Removed arterial line. Using the potty in her room.  Up and taking walks down the hall.  Watching basketball with dad before bed=)  Her favorites of the day were still being held and I'm pretty sure it was Danae and my favorite part too!  

Dr.'s are happy with her progress.  Still have a couple steps to get through, an echo (heart ultrasound) sometime in the next couple days will probably be the biggest.  All the nurses have been absolutely wonderful.  Very attentive, patient, gentle and capable.  We have appreciated each one and it's almost hard to tell them goodbye not knowing if we'll see the same one again or not.  

Tomorrow we expect lots more walking and activity. Hopefully we will start talking about discharge plans but don't want to be too anxious and leave before we are ready.  I (Aaron) was able to get into the Ronald McDonald House today so our housing is more stable and we are able to comfortably get through the nights.  

Thank you to all who are praying and sending texts and messages.  We love hearing from you and wish the hospital would allow more visitors, but we understand the importance of keeping these kids healthy as well.  As our situation stabilizes, I become more and more aware of how many families are in similar or even more difficult situations.  We don't know their stories but we feel their pain and worry and our hearts and prayers reach out to them as well.  

Goodnight from Philly, we will update through the day tomorrow if there is opportunity or tomorrow night at least.

Day one post op...

First off, a shout out to the Ronald McDonald House for providing a family lounge in the hospital with a computer and INTERNET ACCESS!!!!!


Jadelyn's first night went well though it notably lacked the element of sleep.  (But we expected that!)  =)   The anesthesia, as it often does, slows down body functions and her stomach is slow in "waking up" resulting in her throwing up several times last night and this morning.  Please pray with us that she'll soon be able to keep down food and fluids. 


During the night they were able to take her off oxygen and this morning they removed the chest tube and urinary catheter.  They are soon planning to remove the arterial lines (IV's in her arms).  This means that we are oh so close to having a wagon ride around the hospital and visiting the play room. 


Jadelyn is very stoic this morning.  Mostly caused by pain and tiredness, I think.  She is also on Morphine as needed which I am sure adds to her grogginess.  Her nurses have been very good and her day nurse today is determined to get a smile out of her. 


The highlight of this morning has been FINALLY getting to hold and snuggle our little girl again.  She fell asleep almost immediately after being placed in my arms.  It's hard to imagine how scary this must be for her and amazing to realize how much the simple concept of being held can go so far in helping her relax and heal.  Ironically (or not) the song we've clung to the last few days simply says, "just be held".  What a great image of God holding us and comforting us as we hold and comfort our precious little girl. 


Thanks for your prayers!  You are with is each moment as you help carry us through.


One more prayer request.  Please pray for the boys.  They are doing great but they are missing us too.  We are so grateful for the great support system around them while we are away.


One quick story I have to add.  Jadelyn pulled a first on her nurse this morning.  At 2:30AM she decided she was tired of the cartoons on her T.V.  (We had left it on for as a noise buffer through the night.)  As her nurse got the remote and began going through the channels she asked Jadelyn, "What do you want to watch?"  "Basketball," was Jadelyn's reply.  And so it was that for the remainder of the night we watched sports.  First thing this morning Jadelyn asked Aaron, "Do you like the yellow ones or the red ones or both."  She's learning to talk sports already and her daddy couldn't be more proud!

Surgery Day

Update on surgery.  Today was a long day but good day.  We really liked the surgeon who we got to meet right before surgery.  He is one of the best pediatric thoracic surgeons in the world.  Literally, one of the best on the whole planet.  He has visited Shanghai and most likely has met the surgeon who did her first surgery. (We don't know who that might be, but it sounds like he has visited in a teaching capacity and does conferences all over the world.)  He was also very aware of the exact procedure they likely used, and well prepared for what he might find during surgery. This was such an amazing experience and we are still trying to comprehend all of it.  This is likely the closest connection we will ever have with her doctors and hospitalization before adoption.  We are amazed again at God's goodness in providing just the person we need, right when we need them.  

Surgery went well.  Dr Spray was able to place a much larger conduit that included a pulmonary valve.  My baby no longer has a heart murmur!  That was really emotional to listen to.  We still can't predict what the future holds for a long term fix, but this surgery went well.  

A funny story from this morning, our anesthesiologist was Dr. Jolly.  Anyone who gives laughing gas for a job should be named Dr. Jolly.  He was also really nice and Jadelyn really engaged and talked to him the whole way to the OR.  When we told the nurses they laughed and said he usually doesn't talk at all!  Jadelyn can connect and talk to ANYBODY =).  

On to recovery.  Jadelyn slept most of the afternoon.  She has had good pain control with the medication and seems fairly comfortable except for being frustrated that she can't be "UP".  If everything continues to go well, we will probably transfer to the step down unit tomorrow.  

Thank you to everyone who has prayed, posted, commented and encouraged us today. Your gifts and kindness are overwhelming and unrepayable, but know that we love each and every one of you and couldn't do this without you.  

The song on the radio when we were parking this morning was the one we posted a couple days ago, "Just Be Held" by Casting Crowns.  The final verse was truly our experience today and we know He is there for each day in the future.

"Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go"

Surgery Time

So we survived 6 hours of  testing today.  We are exhausted from the rigor of institutional hospital.  There is no doubt they are REALLY good at what they do and we are very thankful, but it's still a hard road to work through each step.   Jadelyn's surgery is scheduled to start between 7:30 and 8 am.  This means we have to be at the hospital by 6.  That's a really early morning, but we are also thankful because that means much less of a wait without being able to eat or drink.  
Thank you all for your prayers.  It feels a bit like going through an emotional rock crusher.  The "this is everything that could possibly go wrong" talk was awful.  And then one minute later my beautiful little girl is singing "I've got the joy, joy, joy, joy down in my heart....and I'm so happy, so really happy, I've got the love of Jesus in my heart."  His grace is enough.....

Hospital Visitation

We are so very grateful for the love and support we have received and please know that we will carry it in our hearts as we head to CHOP.  

CHOP has a limited visitation policy due to flu season.  I'll post a link to their policy here:
http://www.chop.edu/patients-and-visitors/limited-visitor-policy

While hospital visits aren't going to be a good option, you CAN visit us through text, phone, facebook, & email......and this blog.  =)

Thanks again!
Aaron and Danae

Overwhelmed....

How do you ever begin to prepare for your daughter's heart surgery?  We begin with prayer.  Prayer for her healing, prayer for her doctors and surgeons, and prayer for our peace in the journey.  Then we asked our church and families to pray along with us.  Now we are just 48 hours away and are praying time slows down and passes quickly.  

Yesterday our church blessed us with a huge care package.  We can never begin to say thank you enough for all the cards, snacks, books, stufties, games, and STICKERS!  Yes, Jadelyn loves stickers! =)  It is an overwhelming encouragement as we prepare for the days where time passes slowly to know that there are so many people praying and standing in the gap for us.  We admit we are physically and emotionally stretched already, but we are doing ok.  God is faithful and He has brought us this far and will carry us through to the completion of His plan for His honor and glory.  It has always been His story. 

Thank you all again for your prayers and gifts of encouragement.  We carry all of you in our hearts.  

We don't know Jadelyn's exact surgery time yet.  We will find out tomorrow (Tuesday the 31st) before 5pm.  We will attempt to post around then and let you know a more exact schedule.  

We have heard many songs and stories of encouragement.  Today, we are trying to let go of our desire for control and let the God of the universe hold our hearts.

https://www.youtube.com/watch?v=tIZitK6_IMQ

The Weight

People keep asking how we are doing.  I keep telling them for the most part ok.  I'm not worried but there is a weight to knowing your daughter is scheduled for open heart surgery.  The following I wrote today to try to express a little bit what that is like.

The Weight

It’s never very far away…always lingering, loitering, lurking.  The smiles and laughter make a stoic attempt at framing a lighter, airier canvas but in the end, the jocular is replaced by the mundane and the weight returns.  This masquerade is just that, a melted plastic façade required by a world that flaunts faux normalcy.  The hardest part of carrying the weight is that I would actually trade the realness of it for that falseness, just to be rid of its omnipresence.  But I can’t.  I can lay it down, I can forcibly move my mind into other orbits and even allow myself to be pulled into other gravitational domains, but like a fettered ball and chain, the weight follows and will eventually dominate again with its unending heaviness.  I am tethered to it. Leashed.  Tied.  Sometimes I feel it will crush me, at others, I think I might be able to stand. 

I am simply trying to survive.

It comes at the worst times, when I am least prepared and people see it in my distant eyes and they ask “are you ok?”  I realize I dropped my mask.  “I’m fine” restores the comfortable expected for them, but I’m left with the weight.  In a private moment, I will let you see the weight.  It comes in tears.  It’s not pretty.  It isn’t what should be, but it is what is. 

How does a finite mind with an infinite soul cope with a forced contact with the eternal hope at the cost of immortality?

That is the weight.  What if the mortal must be replaced by the eternal?  What if the finite must be replaced by eternity?  That is the weight.  It is not worry, it is not fear.  It is the reality that what we hope for may come before we hoped for it.

It is knowing that hope is only necessary because of pain.

There is a comfort; a time where the weight is not forgotten but is allowed to be set aside, a place for the weary to find rest.  And when I rise from the place, the yoke fits well, it is balanced.  His burden does not add to the weight.  And when closeness allows you to see the weight don’t despair.  No, you can’t make it less and you can’t carry even the smallest fraction for me, but you can add to my strength, you can help me stand and walk forward.  You can hold my hand, whisper in my ear and remind me of hope.  Don’t try to explain the weight away.  I will see your falseness.  Don’t try to minimize the weight’s significance.  I will know it’s a lie. 

The weight is real regardless of your denial or lack of understanding.

Accept it with me, help me endure.  Bring me back to the place of rest, if only for a moment. 

Written by Aaron on Jan. 4, 2017

I'll close with the chorus to a Bebo Norman song:

Dream a little, dream for me, in hopes that I'll remain.

Cry a little, cry for me, so I can bear the pain.

Hurt a little, Hurt for me, my future is untold.

But my dreams are not the issue here, for they, the hammer holds.

The path before me seems unclear, but it, my Maker holds.