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.
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.
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