Challenges and Blessings

On December 12, 2010, in Julia's Journey, Personal, by Chris

The first big Midwest snowstorm of the season has come upon us this afternoon in big, fat, wet flakes. It’s the kind of day that makes you really, really glad that you have your Christmas shopping done and can take in a lazy afternoon of comfort food and nostalgic movies. We, unfortunately do not have our Christmas shopping done, so I’ll be on Julia duty while Jocelyn braves the elements this afternoon to run a few errands and hopefully find that perfect present for her hubby.

There has been little new progress in terms of Julia’s progress – except that I brought home a cold last week and immediately gave it to her. Nothing really earth-shattering, we found out later, but it makes the feeding a little more challenging. It’s amazing what makes you realize how tenuous our position can be. I felt terrible about it when I realized my sniffles were not allergy related and for a couple of days did not go near Jocelyn and Julia in deference to their well being. That forced all of the caregiving for Julia on her mother and leaving me to sit across the room and watch them. And I never really knew how much I could envy a person until I watched Jocelyn holding our daughter and not be able to myself.

I got a new fun medical fact when all of this shook out. It seems that the common cold is at its most contagious two or three days before the symptoms show up. But the pediatrician said that even though Julia had what I had, she would be fine and wouldn’t re-contract it once I’d given it to her. So I needed to cowboy up and hold up my end of the caregiving. Yahoo!

As I mentioned, with the reflux and cold the feeding has become a little more challenging. Her volumes are an ounce or two below the normal daily target. Perhaps it was providence that Dr. Weinhouse, our cardiologist, advised us to relax and let her take what she takes and leave the rest to God. It’s been an important challenge, since we can offer it, but Julia’s got to take it. Despite the feeding challenges, however, Julia had still gained three ounces for the week!

There have been other blessings as well. One was a new acquaintance we made with Audrey and her parents, Jim and Jessica. Dr. Weinhouse noticed that she was in for a routine follow-up exam and wanted to be sure that we met. Audrey had, last August, undergone the same procedure with the same surgeon that Julia will be doing in January. She had gained very little weight before the surgery, but you can see that she’s doing great now! It was a real encouragement!

We also found the beauty of community as our dear friend Patricia gave Jocelyn and I a much-needed break on Friday afternoon to do some Christmas shopping. It was… interesting… for us to be away from her, but a good exercise in the end. Julia did great, Patricia had the time of her life and the new parents realized that it’s okay to leave their kid for a while.

The snow is still falling and we just put our little girl down for a nap. I need to go out and shovel some snow! Stay warm everyone!

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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 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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