Preparations

On December 30, 2010, in Julia's Journey, Personal, by Chris

Yesterday, we met with Dr. Weinhouse, Julia’s cardiologist for a longer-than-normal consult. She continues to do very well and gained another four ounces. But we are shifting from maintenance mode to preparation for the surgery, which is less than three weeks away now. We did another echocardiogram and EKG so that the surgical team at Children’s Hospital could have the very latest information. Julia was good natured through all of it until the last blood pressure, where she decided she had had enough and was ready for second breakfast!

I can feel our efforts beginning to focus as the surgery date nears. We are a little more careful with her exposure to germs since any illness could delay the procedure and Jocelyn and I are ready to get this done. We are pulling ahead her four month vaccinations to give her that much more protection in the hospital. But we are still amazed at how well Julia is eating and responding. By now, a lot of kids with this condition start showing a blue tinge in their hands and feet and often have to go on a gastric tube to get the nutrients they need because they just don’t have the stamina to feed anymore.

The images I saw in the echocardiogram of a 1.6 centimeter hole in her heart just doesn’t match the vibrant little girl I see in front of me. We really do believe that God – and your continued prayers – are sustaining Julia far beyond what the structure of her heart can do. There will be more “mini-updates” in the days to come; but on behalf of this little family that is encouraged and blessed by you, thanks so much for your concern and stay tuned as we count down to the day we can take our healthy girl home!

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Finding Her Smile

On December 18, 2010, in Julia's Journey, Personal, by Chris

Julia has made some great strides and had an adventure or two this week. It seems like she has learned to do so much in the last couple of weeks that we need to take a moment and celebrate. One of the big ones is that she has found her smile and is using it more and more often. It began with a small lift in the corners of her mouth and would flash a quick smile at her mom. But in the last week or so, she’s been smiling a lot! I gotta tell you, eye contact and a grin from this kid and I’m glowing like the moon!

Another win is her head control and the muscle tone in her neck. It usually happens when she’s resting after a good feed. She gets her arms underneath and pushes off for a look around! She’s still working on her landing (sometimes her noggin comes down with a crash!), but she’s really starting to interact with her surroundings.

Julia also got a grand introduction to the staff at Kensington when she visited the office on Thursday. The toughest thing was having to be so vigilant on cootie patrol. I wanted to pass her around and let folks hold her and give her kisses, but we need to be so careful about her exposure to germs that we had to seriously limit her direct contact with people. There was no way we were going to keep Steve Andrews (Kensington’s Lead Pastor) away from her. We still have fond memories of him kicking down our hospital room door some sixteen hours after the delivery hollering, “Where’s my kid??”

Now the challenges that we would like your prayers on:

One part of the day that we least look forward to is the almost nightly meltdown she goes through at around 9pm. It begins with a little fussiness and escalates into a full-blown holler that is absolutely heartbreaking to witness and can last up to thirty minutes. Our theory is that she’s either working through colic or digested mucous, but it always happens around the same time of night. She’s tired afterwards, but otherwise none the worse for wear. Any experience or encouragement you can offer in the comments would be greatly appreciated.

In addition, Julia’s feeding is still an issue; and she gained only two ounces by her weekly weight check at the cardiologist. She’s still breathing very comfortably at this writing, and her spitting up pretty well under control; but it’s the first time I heard a subtle shift in Dr. Weinhouse’s optimistic tone. “She just needs the surgery.” It was stating the obvious, I know; but this may be the first time we got the clear reminder that the medications will only go so far.

Despite the challenges, we’re still watching her one month from the surgery, and we are still in awe of how she is growing. Thanks so much for your prayers. It seems the legion of angels I asked for are still doing their work!

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An Early Thanksgiving

On November 17, 2010, in Julia's Journey, Personal, by Chris

We dared not believe it, but a moment of thanksgiving came a week early! I remember the prayer that Jocelyn and I offered up only 24 hours ago as we prepared for bed. We dared to pray for a weight gain of six ounces at today’s appointment with Dr. Weinhouse. After the modest weight gain last week, we decided to let our dreams go a little wild and ask for double. We figured she had been feeding well, but even so, we gave each other a knowing glance as we prayed – we knew it was a crazy ask.

Julia went through the standard measurements of blood pressure and pulse oxygen saturation – both were good. Better than just good. But the real surprise came at the weigh-in.

Bottom line, the numbers on the scale just didn’t stop anywhere close to where we had thought. Julia’s weight gain for the week was almost seven ounces – far exceeding our hopes for the week. What makes this so encouraging is that the average weekly weight gain for children without heart issues is 5-7 ounces.

It’s amazing how our hearts just… flew… as we got the news. Our daughter is holding up her end of the deal! The feeding and love is working – and the celebration continued as we met with Dr. Weinhouse in his office. He prayed a psalm of thanksgiving over Julia – one that Jocelyn had memorized in Sunday School when she was young. But it really sounds cool when you hear it in Hebrew!

Psalm 100
A psalm. For giving grateful praise.

Shout for joy to the LORD, all the earth.
Worship the LORD with gladness;
come before him with joyful songs.
Know that the LORD is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

The Cook family thanks you for your continued prayers. That tall order I had asked for on last week’s post is one step closer to reality!

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Celebrating Six!

On November 10, 2010, in Julia's Journey, Personal, by Chris

Hey all – you’ve not heard from me because there hasn’t been much to report. We feed, we love, we push through the hard nights when she’s fussy and revel in the luxury of a few hours of sleep when she’s sleeping.

But it’s my pleasure to announce that as the feedings continue, our girl has continued to gain weight and is now hovering right at six pounds. Dr. Weinhouse has informed us that Julia has responded very well to the cocktail of Digoxin, Lasix and Aldactone and expects that the drug therapy will continue to be successful for the foreseeable future. Her muscle control is improving and she’s regularly lifting her head; and best of all (at least from my perspective) her cheeks are starting to fill out and she’s getting creases in those little chicken legs of hers!

Getting her to the optimal weight for surgery is going to be a tall order, requiring a five to six ounce weight gain each week. Her average is around four ounces, but her feeding is continuing to become more efficient – especially with the new bottle system that Jocelyn’s friends on babycenter.com recommended. Our prayer for her is that the feedings continue to go well and our little girl gains the weight that she needs to go into the surgery strong.

And in the meantime, our Julia is going to be seeing the business end of a bottle pretty darn regularly!

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Detours Happen

On October 27, 2010, in Julia's Journey, Personal, by Chris

It was going to be a routine (routine? really?) consult with Dr. Weinhouse today. A quick visit to confirm what thought we already knew: that she was growing, the diuretics were working and we were staying the course.

Forget that we had sneaking suspicions that her breathing was faster and more labored. Jocelyn and I were both realizing it – even feeling her chest almost imperceptibly heave just a little more as we held her. We talked about it the night before, not quite knowing what to do with it; and not even really accepting the reality of it in our minds quite yet.

Well, there was good news and scary news again today. And to be honest, it was scary for just a minute, then it morphed into acceptance of the inconvenience. The good news was that Julia had gained five ounces in a week and was now a full pound over her birth weight! We knew that it was so important for her to be growing well that we prayed on this last night – specifically for five pounds, nine ounces. It wasn’t a huge surprise, since she had been feeding so well, but it was a cool confirmation nonetheless.

But Dr. Weinhouse looked at Julia’s chest rising and falling with his experienced, penetrating gaze. “The breathing is the window to the heart’s left ventricle,” he said, “and God is telling us that we need to help her a little more.”

It was true. The little crease that her chest would make as she breathed was folding a little deeper. Even I could see it. And her breath rate was double what was normal. Our little girl’s heart was running a marathon even as she laid on the examination table.

Dr. Weinhouse had been preparing us for this moment. Julia would need a new drug to help her along. Digoxin – also known as digitalis – is a powerful tool in helping the heart contract more efficiently and relieve the symptoms of congestive heart failure. But it takes careful monitoring as the drug is introduced.

Within seconds, our plans and calendars for the day were wiped away and Julia was going to right from Dr. Weinhouse’s office to the Pediatric Intensive Care Unit (PICU) – only steps away from the NICU ward where Julia started her life. That kind of a change in the day is a little rattling for a parent – especially when we have to admit our fear that Julia wasn’t magically getting better, and that medical science continued to nail the diagnosis and course of treatment.

There was a little water in our eyes as we pondered the thought of having to go back to the fifth floor of the Royal Oak Beaumont’s South Tower (the home of Pediatrics), but I gotta say that Dr. Weinhouse’s encouraging tone was like Prozac for our frayed nerves. “The one thing you need to remember,” he said with restrained passion, “is that God LOVES Julia!” Funny how the best pediatric docs realize that they deal with three patients in any case: the child and two parents. By the way, he reminded me that it was my turn to pray as we finished our consult, and I did gratefully.

So now we are sitting comfortably in a private room in the PICU after a long day of intake, preparation, blood pokes and a frustrating feeding or two. We are thankful for a VERY attentive staff, and love they way they fawn over how cute Julia is!

On a side note, we’ve been dealing with increased mucous (common in kids with Down Syndrome) in Julia’s throat that has caused gagging and distress as she feeds. That’s not been fun at all. I’m glad to say that we are finishing the night with a robust and uneventful feed; and I’m realizing that we’ll need to remember how thankful we are right this moment in the months that will follow.

Sooner or later, (“God willing…” as Dr. Weinhouse often says) once the repairs to Julia’s heart are remediated, her feeding will become routine. If you are praying type of person, I humbly ask for two things tonight: that the medicine will do its work and make Julia more comfortable, and that I never forget to be thankful for a robust and uneventful feed.

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