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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Julia’s Heart: The Straight Scoop

On November 3, 2010, in Julia's Journey, Personal, by Chris

A short video explaining it all…

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Happy Halloween & Back from PICU

On October 31, 2010, in Julia's Journey, Personal, by Chris

The Halloween candy has been passed out and the porch light is off. It was the perfect kind of year for trick-or-treaters – just enough to take most of the candy and leave a little behind. Julia is resting comfortably on Jocelyn and we’ve decided that she likes sleeping on her belly the best (ed. note – that’s only when we’re holding her. We always lay her on her back to sleep according to American Pediatric Association guidelines!). It’s been a nice weekend since Julia’s discharge from the PICU on Friday. We’ve accustomed ourselves to a new course of medicine, which takes a little more intentionality on our part to keep the right levels of Digoxin in her system.

By the time we got home, the home chores had piled up pretty high; so the rest of the weekend was spent catching up on all the things that make a house run – groceries, cleaning and the like.

The three days in the PICU were a blur of visits from different doctors, medicine dosages and waiting to find the right maintenance levels. An Occupational Therapist gave us some great tips on supporting Julia’s feeding so that it’s the most efficient it can be. (btw Did you know it takes seven cranial nerves and dozens of muscles to coordinate the suck/swallow/breathe process??)

We also took advantage of the pulse oxygen monitor and did an impromptu car seat test to see how Julia had progressed since the last time. She passed this time with flying colors, never going below 93% oxygen saturation! That’s good news for Julia because that means there’s a visit to Grandpa Bob’s farm in her future!

We had a chance to better get to know Dr. Weinhouse’s partners while we were in the hospital as well. Drs. Cutler and Riggs are just as compassionate and knowledgable as Weinhouse; but it’s interesting that as informed as their opinions are, there is some variance in their outlook on how much time the Digoxin is going to buy us and when the ultimate time of the surgery is going to be.

No matter. We have our orders. Feed her, love her, and let God and Julia tell us when the surgery is going to be. Until then, Happy Halloween!

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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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