On March 2, 2011, in Commentary, Personal, by Chris

I’ve been struggling lately with a question in my head about the ultimate direction I want to take this blog. Certainly, Julia has been my inspiration for a lot (most?) of my writing over the last six months; and I’m loving how so many have been rooting for her as she went through her surgery. But the drama is honestly starting to dry up and we’re dealing with a pretty typical kid. Even with the uncertainties of how her Down Syndrome is going to unfold, there’s going to be a whole lotta nothing in terms of extraordinary news.

So here’s the tension I’m living in: Does my writing start branching off into other, riskier subjects or stay in the comfort of chronicling Julia’s progress as she continues to grow? I hope this blog can contain both, and I invite you to drop a comment and give me your perspective on the other issues that weigh on my brain. I’m setting a goal for myself to have something new on here in the next week or so.

But in the meantime, Julia started exploring solid food last night; and I know several who were dying to see the pics. So here they are. We began her culinary adventures with peas as directed by her pediatrician (contrary to the rice cereal that seems the norm). She said to begin with vegetables and fruit and then branch out from there, so we started with something on the less yucky side of vegetables. Turns out she loved them!

Like I said, you’ll be seeing something non-baby related very soon. I hope to see you back!

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A Milestone Revisited

On February 27, 2011, in Julia's Journey, Personal, by Chris

Tonight was momentous – and not because of the Oscars! For a couple of weeks before the surgery, Julia had been rolling over when we got her on the floor for “tummy time”. On January 16th as we were packing up to go down to Children’s Hospital, she actually rolled from her back to her belly. It was a mix of elation and wistfulness as we watched, knowing it would be a long, long time before we would see her do that again. Open heart surgery has a way of delaying things.

We had to wait thirty-seven days, but we set Julia on the floor this evening and she rolled over as if she was picking up right where she left off. She was a little taken aback with Jocelyn and my shouts of celebration, but she seemed to take it in stride. I’m hoping that you’ll celebrate with us!

UPDATE: I just got a text from Jocelyn that Julia tipped the pediatrician’s scales at eleven pounds this morning! One more thing to celebrate!

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Nothing to See Here…

On February 18, 2011, in Julia's Journey, Personal, by Chris

And the news is… not much!

And that’s part of the reason (well, that and my computer’s hard disk crash) that you’ve not heard from me lately. It’s become… spookily… normal. Dr. Weinhouse checked Julia out last week, adjusted medicine dosages downward and doesn’t want to see her for a month. Her weight has sailed past nine and a half pounds and is expected to hit double digits in the next week or so – if she hasn’t hit it already.

Julia’s feedings have become uneventful (remember when I prayed for that? We’re there!). She hates taking naps during the day and it makes her a real pistol in the evening before we put her down for the night (thankfully, she’s a great overnight sleeper!). She is already doing doctoral research in creative diaper filling; finding new, innovative ways to get around the diaper and mess up her outfit.

It’s a strange thing coming to terms with the reality that you don’t have what feels like a sword dangling over your head anymore – that there’s more to the world than your child’s (now repaired) heart. Jocelyn and I are less obsessive about her feeding volumes and have moved on to talking about how we’re going to get her on a schedule so we can smooth Jocelyn’s transition back to work. And there is also a realization of the vast energy that Julia’s heart condition required of us. Fortunately, there are plenty of other things to pour that new energy into. We may even get back a few of those sleepless nights… in 2035.

Truth be told, we have joined the ranks of the rest of the new parents out there with dreams and desires for their kid’s future. Julia’s Down Syndrome is still out there and its aggregate effect on her is yet to be revealed; but our conviction has remained unshaken that despite it all, our little girl is going to have an incredible impact for good on the world. We will do our level best to give her every opportunity we can, and then let Julia define herself.

Meanwhile, with the dearth of news regarding Julia’s heart condition, I’m going to have to find some new things to write about. Stay tuned!

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One Week Later

On February 2, 2011, in Julia's Journey, Personal, by Chris

Just wanted to give you a quick update of how things have gone a week after Julia’s discharge. As you can see, she’s wearing her new scar like a party hat! She seems to be over most of the discomfort, and though we’re still in the process of… er… stabilizing her diaper situation, we think that a corner has been turned in that area as well.

It’s becoming a little more normal every day. Interesting thing is that we really don’t know what “normal” looks like. We’ve been living in a state of abnormal for the past nineteen weeks, and it’s going to be an interesting journey on the road to normal. Those thoughts are forthcoming.

But as you can see, our girl is definitely thriving through it all. Thanks so much for your concern and encouragement!

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Dreams Fulfilled

On January 30, 2011, in Julia's Journey, Personal, by Chris

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!

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