A Year (and a Lifetime) Ago

On June 12, 2012, in Julia's Journey, Life, Personal, by Chris

Tonight I was reminded again that sometimes in the crush of the day to day, I need to remember to sit and be grateful every now and again.

It started innocently enough. I was dealing with a typical “first world” problem and rearranging some stuff in our refrigerator so that I could somehow wedge more stuff in. I was in the middle of marveling over how many different mustards we had when my eye was caught by a small brown bottle in one of those shelves in the refrigerator door.

It was the Enalapril – a medicine that we gave Julia after her surgery to protect the delicate work that the surgeon had done on her heart valves. We stopped giving it to her after we got the okay from Dr. Weinhouse last May. That was over a year ago.

But for just a moment, as Jocelyn finished cleaning up from dinner and getting ready to meet a friend for coffee, it all came flooding back.

I sometimes marvel at how seldom I think about those first intense months of Julia’s life when the needs of little girl now sleeping happily upstairs utterly overtook our household. But I marvel all the more at the little touchstones that God puts in my path to remember and say “thank you”.

It took a small brown bottle of long-expired medicine to remind me of the nights of sacrifice common to all new parents, painted over with a thin watercolor tint of uncommon terror as we painstakingly documented every milliliter of fortified milk that she took in. Staying mindful of the 150 kilocalories per kilo of body weight per day target that the docs had set for a healthy weight gain, we celebrated when she was able to fight through the fatigue of a failing heart and take in a whopping sixty milliliters in one feeding. And it often felt like the world was going to end when she spit it up like any normal baby does from time to time.

But we stayed even more mindful of the drugs that kept her comfortable before her surgery and protected her heart after we brought her home. Dosing, timing and praying to God that she wouldn’t hurl it up after we gave it to her. Dr. Weinhouse told us in so many words (and out of his love and concern for us) to chill out a little bit, and toward the end we started to.

But before too much longer, it was done. May 30th, 2011. Julia took what we pray was her last dose of heart medicine for a long, long time.

And as you can tell a year later, she is thriving. Now we have a whole boatload of new challenges: therapies to get her strong and mobile (not much longer!), negotiating with the school’s special education department for services over the summer (no dice) and thinking through the implications of the selection of a new school superintendent. But for all of the challenges, we find ourselves enjoying the present far more, even as we prepare for her future.

But sometimes it’s important to remember what has passed, remember God’s presence in it, and say “thank you”.

Oh yeah, and remember to clean out the fridge a little more often!

Good to be back…

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Heart Day’s Eve

On January 16, 2012, in Commentary, Julia's Journey, Life, Personal, by Chris

I rocked my little girl to sleep tonight.

I know that’s not such a news flash. In fact, it’s pretty routine around our house. Even though all the experts say you shouldn’t let your baby fall asleep in your arms, but lay them down while they’re still awake so they can self soothe and all of that, I indulged myself a little bit, just for tonight.

I also cried like a little girl when I read Julia one of her bedtime stories tonight.

Okay, that’s a little less routine. Jocelyn was out at her book study and Julia and I had a great night playing stack up cups and tossing her rattles around and knocking down blocks and doing our silly little dances together. Then she gave me that “I’ve had enough” look and we settled into a few books before I took her upstairs. And I have to admit that something caught in my throat when I read those words to her:

For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again…

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.*

*Taken from a great children’s book called On the Night You Were Born by Nancy Tillman. Find out more here.

I have read those lines I don’t know how many times before, but tonight I couldn’t even get through the second stanza before I sat there, thunderstruck and weeping at the realization of what a gift this little girl was in my life. As I tried to compose myself and read through the blur of tears, Julia looked up at me with her wide, innocent eyes, knowing that this was not the usual program.

Okay, I’ll let you in on the mystery behind all the waterworks. Today marks the eve of a very important anniversary in the life of the Cook family and Julia especially. It was a year ago tomorrow that we handed her over to the Cardiovascular Team at Children’s Hospital for an eight hour procedure that made her life a year later even possible.

And it all seems so long ago now…

I took some time this weekend to look back at some of my posts from those seemingly endless days just to jog my memory of what we were facing. The pictures from the surgery day still make me gasp.

But the interesting thing is that we really don’t think about the scary stuff any more. The only reminders we really have is the fading scar on Julia’s chest and a very infrequent consult with her cardiologist.

A year ago, we were gutting it up for eight hours of surgery. Nowadays, we are gutting it up for the war of wills when nap time comes around.

A year ago, we were dosing out four different medicines at several specific times each day. Now we’re doing high fives if we can get a sometimes picky eater to down all of her peas.

It all feels so… normal.

Yes, there’s the morning ritual of her thyroid medicine and the regular (and frequent) adjustment of expectations that come with the territory when you have a kid with Down Syndrome.

But with God’s grace, the prayers of so many and the hand of a skillful surgeon who had the humility to know where his skill came from, our baby’s heart is just fine.

Thanks for celebrating January 17th – Julia’s Heart Day – with us!

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Great News from Dr. Weinhouse

On August 24, 2011, in Julia's Journey, Personal, by Chris

Many of you remember the experiment we entered into a few months ago when Dr. Weinhouse, Julia’s cardiologist, took her off of her heart medicine. He decided to see her again at the end of the summer instead of the customary six months, just to make sure that his decision was a good one.

We are always glad for an opportunity to see our friend sooner than later, so Jocelyn and I spent the summer watching Julia’s progress and looked forward to seeing how she fared without the meds that we had thought were going to be needed indefinitely.

It was a strange feeling I had the night before her visit. I’m not sure where it came from, but I got the urge to pray for a good report. I kept going between thinking everything was going to be okay and nagging feeling that heart issues often have very subtle symptoms.

That night, I lit up my Twitter and Facebook community asking them to pray for a good report. I gotta tell you that this is one great group of people who have been so faithfully praying for our family, including a worldwide prayer vigil before her surgery. I honestly don’t know how we could have gotten through this without them.

We went in yesterday morning for the weigh-in (over eighteen pounds now!) and the initial exam. It was so great to see the staff again. They all recognized her and most remembered her name. But it was the echocardiogram that was going to be the real test. Within minutes, Dr. Weinhouse’s face burst into a smile as he said, “WOW! Contractility of 75-80! She is doing fantastic!”

We would find out later that contractility is the heart’s ability to push the blood out, but we didn’t need to know the numbers to understand what was going on. Julia’s heart was working fine without the meds.

So we celebrated and prayed together as always, but I honestly felt a note of bittersweetness at the thought of not seeing our friend as often.

I’ll leave you another prayer request as a postscript. As we walked into the office that morning, reasonably confident that our family was on the other side of this challenge, we saw another family at the beginning of their journey. The parents sat huddled together, a tiny baby on mom’s chest. They nervously shared whispers of half-hearted encouragement as she cuddled the baby and dad cuddled her.

I don’t know their names and we may never know their story; even though I told Dr. Weinhouse to give them our name and number if they needed encouragement. But I saw a very familiar look of stiff-jawed dread on that father’s face. He was right where I was almost a year ago as I searched through every personal and emotional asset for a way to face the coming storm. Fortunately, I had a constellation of friends around me, prophetically reminding me of the comfort God offers for those who are crushed in spirit.

Please pray for that little family at the beginning of their journey, that God would give them the full measure of the encouragement that he gave us.

Thanks so much for your prayers!

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Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

– Ephesians 3:20-21

Amen! And we saw that power at work today!

We were expecting a normal consult this morning. Of course, it was a fun happenstance that we were going to see Dr. Weinhouse on Julia’s eight month birthday, but we couldn’t have dreamed of what we would walk out with. The weigh-in showed that she was growing well (14 lbs. 12 oz. and 25 inches), but the real fun came with the echocardiogram.

It was standard stuff to begin with, but Dr. Weinhouse got more excited as the testing progressed. His descriptions began with “very good” and progressed to a big smile and an enthusiastic “Beautiful!” The outcome was that the leak in Julia’s mitral valve could only be classified as “mild plus” and her heart’s contractility was better than average. Toward the end of the testing, we were thunderstruck when he said that there was no need to keep Julia on her heart medication!

We were told at Children’s Hospital that Julia would need Enalapril indefinitely to reduce the blood pressure and protect the newly constructed valves; so our expectation was that the therapy could last years. For it only to be four months was far, far beyond anything we could have asked. We celebrated by giving Dr. Weinhouse an addition to his picture collection and Julia celebrated with a soak in the tub.

She continues to amaze us as she continues to grow. Her preferred mode of transport is rolling where she wants to go; but she’s getting stronger daily and it won’t be long before she’ll be able to sit up on her own. Thanks for your continued prayers!

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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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