Thanks for your forbearance as I took a little time off from the blog and focused on being present for our Julia. It was right around this time two weeks ago when we were making final preparations and loading the car for the trip down to Children’s Hospital for the overnight stay before the surgery. At the time, both Jocelyn and I were a bundle of anxiety.
Now the only anxiety we’re feeling surrounds getting our daughter through a roaring case of post-surgery constipation. Some pain meds have a tendency to slow down the gut, causing some collateral consternation in the lower gastro-intestinal area. As a result, each subsequent diaper change has been an adventure. I don’t think I’ve ever been (nor will I ever be again) as interested in someone else’s poop. The good news is that things seem to be… moving again.
Other than the challenges on the “down low”, Julia is doing very well. The ease and volume of her feeding has jumped significantly and she never had to use a feeding tube; which is a real blessing as a lot of kids have to use one due to the post-operative pain that can make bottle feeding very uncomfortable. She has also been weaned off all of her pain medicine, except for an occasional dose of Tylenol. Other than the aforementioned discomfort, she’s remained relatively happy and is smiling more and more. We’ve been instructed to keep her away from crowds for a month or so, but we are looking forward to walks into town when the Spring breezes blow.
We had the opportunity to have a more personal discharge consult with Dr. Walters. He said he had a lighter day and could indulge in the luxury of being a “real doctor” and see us, as he normally has to focus on the sicker kids and leave the discharge procedures to his staff. We were walked back to his office as he was finishing a call to schedule a heart transplant for a child being flown in from the Middle East. It was a sobering and healthy reminder that even though Julia is kind of the center of our universe right now, there are other people’s kids who need help as well.
In the end, Dr. Walters was genuinely pleased with Julia’s hospital recovery. Her breathing tube was removed sooner, she ate from the bottle more quickly and consistently, and was clearly thriving as the tubes and wires were progressively removed. By the way, the final tally was a breathing tube, naso-gastric tube, nasal drainage tube, foley catheter, central venous and arterial blood lines, one peripheral IV line, one abdominal and three thoracic drainage tubes and six pacer wires – seventeen in all (not including the blood oxygen sensor, skin temp sensor and EKG wires).
Life, however, rarely ties things up in nice, neat bows – and Julia’s case is no different. This was basically a complete reconstruction of the inside of her heart, so there are things we’ll have to watch. Dr. Walters told us that there was trivial and expected leakage at the center of both the tricuspid and mitral valves; but there is a small jet of blood leaking from the mitral valve that he frankly wishes wasn’t there. So Julia will need to be on Enalapril for the foreseeable future to moderate her blood pressure and protect the valve from undo stress. It’s something Dr. Weinhouse, Julia’s cardiologist, will monitor and we’ll agree to leave to God.
At the end of the consult, Dr. Walters offered to pray for Julia and we gratefully accepted. Couldn’t have been a better end to a harrowing ten day ordeal. And interestingly, his prayer invoked dreams for Julia similar to our own.
And perhaps it is here, in the safety and comfort of home as I watch Jocelyn holding our child and occasionally pause to feel Julia’s heart beating in her slightly less-than-flawless chest, where I can thank God that one of those dreams have been fulfilled. My daughter lives and heals and grows. There’s a way to go, but we are most definitely on our way.
Thanks again for your concern and encouragement!
4 Responses
So glad you gave yourselves a break from anything extra. We all love the pictures and prose, but not at the expense of you three. Lisa
God bless you all. Thank you for sharing the incredible story that is your family. I’m looking forward to the next 50 chapters!
Bill
Glad you’re cocooning with your family! I felt no news was good news. I just thank God for His mercies. Your little one has felt the prayers of many that haven’t seen you in a long time, me inculded!! All Praise goes to God!! Your Julia is destined to impact many. She already has….by just watching the journey of a truly Godly father and mother! Your words are full of love and care and good for all of us to see!! Hugs, Pam
Jocelyn and Chris, With joy and awe I have been looking again at your blog. Julia is precious and beatuiful beyond words. So sorry that I missed meeting her and seeing you when you were here. Already looking forward to meeting her in the future.
We know the sorrow of having a child with special health concerns and then waiting day by day for improvements. How wonderful it is to get to the other side of a problem and see God’s working. Janie