james got a new heart today

It's a weird thing, the day/night before you go to the hospital.  It seems like you are savoring every second, just in case.  Savoring every little thing he does, and in disbelief about who you're about to hand him over to.

So grateful that everything turned out okay.  I am writing this now, 2 and a half weeks post discharge with a baby boy that is sleeping with a "fixed" heart.  I pray he won't need further intervention in his life, or at least not much of it.  

Morning of surgery:  Stressed out parents, blissfully unaware baby boy hopped up on Versed.

The photo I took as they wheeled him off.  I did not stop crying for the next four days.

 This is one of the first photos I took on that day.  Poor baby boy.  He was extubated in the evening.  

This is the photo we sent friends and family, with this message:

James is stable and out of surgery.
All the details for those that want them:

The surgeon did not use a conduit, which is wonderful news! Bad news is the pulmonary valve was not functional. He was not able to spare it. So James will need a valve put in at some point. Dr. Starnes thinks around age 8-10.

James is very sleepy still from the anesthesia. Goal is to slowly wean him off the ventilator and take his breathing tube out sometime this afternoon or evening. He is on one heart medication while his heart adjusts to his new anatomy and will gradually be weaned off of it. All normal.
We are so grateful for a good outcome so far. He looks peaceful right now, which I am grateful for. Thank you and keep those prayers coming.

That evening's update:

Breathing tube out. After they took it out they sat him up and he cried like I’ve never heard him cry. So sad. He is in pain and hungry but being so brave! Sucking on his binkie like there’s no tomorrow. Praying for pain control tonight, as I’ve heard the first 24 hours are the worst.
His vitals are looking normal for someone with a recent TOF repair. His heart rate isn’t as elevated, and the venous return in his heart is still a little low but looking better.
Spoke to the cardio attending who thinks James may not need a valve for many years (good news!) but time will tell. I’ve been so impressed with CHLA! The whole team is wonderful and quick to respond to our concerns, to James, and help him progress along.

Overwhelmed with gratitude for the many prayers we have received. Thank you for being on James’ team. I have received so many texts, messages, and words of encouragement. If I didn’t respond back, just know I am grateful and that you have bolstered me up today, doing something I truly didn’t have the strength for alone.
Most importantly, we are so grateful for our Father in Heaven, who truly answered our prayers with miracles today. He is blessing James perfectly and we need only trust in Him and His plan for each one of us. God is good and loves us all so much.

I realize I am so very blessed to make the following statement; but here we go.

Sometimes I forget that James has a severe congenital heart defect.

I will go about my regular life, complaining and worrying about the most insignificant things.  The days seem normal, really.  And then, it knocks the wind out of me as I look at him and suddenly remember that he has a lifelong illness.  That he will need, at minimum, one life-saving open-heart surgery.  And as much as I fight against the thought, I know that this is not something that can be fixed and I will never have to worry about his health again.  I will always worry.  Even if his correction goes as planned, we will always be waiting for the next shoe to drop.  This is a lifelong challenge. 

The crippling anxiety at what he is going to have to endure and go through sets in.  And those petty thoughts I was just having about my girls refusing to eat their dinner don't seem quite so important.

I am grateful for the newfound perspective.  I am broken for all those wonderful moms and dads that are waiting to be reunited with their angels in heaven.  I know that we are one of the lucky ones, and that there are families that are even luckier than us. 

When we chose to come to earth, we knew that the heartaches of mortality, including imperfect bodies, was part of the deal and would be well worth the pay day.

Elder Holland sums up my feelings pretty well:

"There is no shortage of suffering in this world, inside the Church and out, so look in any direction and you will find someone whose pain seems too heavy to bear and whose heartache seems never to end. One way to “always remember him” would be to join the Great Physician in His never-ending task of lifting the load from those who are burdened and relieving the pain of those who are distraught.

Beloved friends, as we unite across the globe each week in what we hope is an increasingly sacred acknowledgment of Christ’s majestic atoning gift to all humankind, may we bring to the sacramental altar “more tears for his sorrows [and] more pain at his grief.” And then, as we reflect, pray, and covenant anew, may we take from that sacred moment “more patience in suff’ring, … more praise for relief.” For such patience and relief, for such holiness and hope, I pray for all of you"