Thus Far…

On October 20, 2010, in Julia's Journey, Personal, by Chris

The weather has given way to wind and rain tonight, and I’m listening to Jocelyn singing “You Are My Sunshine” to Julia up in the nursery. The house is quiet after the flurry of activity that comes with trash night and a run to Target and I’m thinking back to where I was a month ago.

Right around this time, I was peering through the plastic of an oxygen tent at my newborn daughter – the NICU staff working quietly around me as I stared in disbelief. My wife was recovering from an emergency caesarean a floor above. And I wondered in awe as I watched her sleep, what surprises lay in the days ahead.

There have been surprises and challenges in the last month, but tonight we celebrate a month that Julia Paige Cook has drawn breath on this earth. And we thank God and our community and family for it all.

So why is the picture of the stone? I see it as the intersection of ancient reminders of God’s presence and an interesting happenstance while we were on vacation in Greece this summer.

My sister, Lauren, is not much of a deep water swimmer, preferring to chum along the shore with her snorkel and mask looking for interesting stones to add to her collection. I have seen her come out of the water laden down with more than she can carry. So, ever the pragmatist, she most often tucks them into her bathing suit as she swims to take full advantage of the time in the water. A gifted artist, she has gone to great lengths to incorporate her finds into the tile work of their villa.

Jocelyn and I had been on the island for a couple of days; and the care and stress of Julia’s diagnosis was beginning to melt away a little. During an evening swim at a secluded beach, Lauren popped up between us and showed us some of her finds. Jocelyn’s eyes fell upon a green stone with a stripe of marble running through it, and without missing a beat, said, “That’s Julia’s heart!”

Interesting. It had the distinctive shape, and the marble stripe ran right where the wall separating the left and right chambers of the heart might have been. It was a strong line, and a reminder of what to pray for regarding Julia’s heart, which by then we had been told had complications.

Before our vacation, we had spent an evening at a friend’s home with the British evangelist J.John, who is a firm believer that God can move in the present day just as he did in the Bible. His challenge to us that night was to pray for Julia’s wholeness, despite everything that medical science was telling us. And when Julia was born, we would have more clarity on what specifically to pray for. So for the rest of the summer, we used my sister’s gracious gift as the focus of our prayers: “Please, God. Make our child whole. Repair the breach in her heart and let her live.”

It turns out that Julia still has a heart defect; and the stone still sits on the sill of our kitchen window. But instead of a reminder of promises unmet, its meaning has changed and deepened as our experience has formed us.

Its roots take Jocelyn and I back to a time long past with a nation doing its best to follow a Deliverer God with a name no one dared speak out loud. They gathered and asked their priest, Samuel, to intercede with God on their behalf. Enemies learned of the gathering and raised an army bent on genocide, and God swept them aside with heaven-sent thunder. And as the old Hebrew story goes,

“…Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying, ‘Thus far has the LORD helped us.'”

Ebenezer – a stone of God-sent help. When God did something memorable in Israel, they would often raise a stone of remembrance, so that in the darker days of the future there would always be a reminder that God would be there – even when it didn’t feel like it.

The good news from the Cook family is that Julia is responding well to the medications and her breathing is more comfortable. She is gaining weight, even with the fluid loss caused by the medication. We have our first consult with the surgical team at Children’s Hospital tomorrow, and we may even set a tentative date for the procedure. Complications notwithstanding, the countdown begins tomorrow.

There are times as we consider Julia’s condition that it feels like we have been forsaken and the fears of going it alone overtake us. But the marble striped stone stays on our window sill as a reminder that thus far, the LORD has helped us. We celebrate that tonight on our daughter’s one-month birthday.

Tagged with:
 

Whatta Week…

On October 15, 2010, in Julia's Journey, Personal, by Chris

I’m sitting next to my wife with the baby in her arms after a pretty tiring day. After a week’s blur of doctor’s appointments, trips to the pharmacy and paging through volumes of insurance forms, we are really feeling the fatigue.

Julia has had a lively day where she stayed awake almost the whole morning and then had an afternoon photo shoot with a family friend who happens to be a very talented children and lifestyle photographer. Shannon is a good friend who actually got me out from behind the camera for a few family shots (more on that later). It turns out that all the activity tuckered our little girl out and put her on the corner of Fussy Ave. and Cranky Street. No fun when that happens, but now she is resting comfortably. Even as I write, I am watching the pacifier in her mouth bob hypnotically up and down, pause, and then start again as she dozes and coos, waiting for her evening bottle.

I spent most of the morning lining up consults with pediatric heart surgeons – one at University of Michigan and the other at Children’s Hospital. I even drove downtown and navigated the rabbit warren of halls and elevators of Detroit Medical Center to drop off Julia’s chart at one surgeon’s office. This will be my life for a while – trying to juggle the roles of dad, husband, pastor, and (somewhere in there) child of the Creator.

I’ve received feedback from many saying they are praying for our little girl – thanks for that. It turns out that the results are… mixed, but ultimately hopeful. The Wednesday meeting with Julia’s cardiologist revealed that the “honeymoon period” is drawing to a close and the symptoms of her heart defect are beginning to show themselves. After intently watching her as she laid on the table, the doc detected a very subtle shift toward rapid, shallow breathing – a telltale sign of stress on the left ventricle of her heart. But he assured us that it was nothing to be alarmed about and that God loved Julia. And even through the quiet panic I have to fight off when I hear scary news about my daughter, at that moment, I believe him.

Dr. Elliot Weinhouse is truly an amazing man. An Orthodox Jew who, legend has it, is a rabbi at his temple and the father of nine children. Oh, yeah – he’s also one of the best pediatric cardiologists in the Midwest (my assessment). I’ll share another story of his passion for God and people – especially children: The first time I saw him at Julia’s bedside in the NICU, he took my hand, looked me in the eye and quoted the Priestly Blessing from the Book of Numbers – some of it in English, some in Hebrew:

“The LORD bless you and keep you;
the LORD make his face to shine upon you
and be gracious to you;
the LORD lift up his countenance upon you
and give you peace.”

… soothing words for a shell-shocked, uncertain new dad to hear. We even prayed together at her bedside with his uncertain East Indian resident.

He always has a kiss on the forehead for Julia, warm words of encouragement to steady the nerves of her parents, and as I mentioned in a previous post, his office walls are literally covered with the children (he says “precious children”) that have been under his care over the years. And anyone who, at the end of every visit, prays in Hebrew over my kid is a rock star in my book.

The disappointing news of Julia’s symptoms made Wednesday a quiet day as my mind churned through the emotion of it. This was going exactly the way medical science predicted. God seems to have decided not to delay the symptoms, as I had asked so many to pray for.

Damn.

But I, prompted by a benevolent butt-kicking by a friend, woke just enough from the weight and stress in my head to decide to be grateful in this. Notice: I did not say grateful for this, but in this. God gave us over a week at home to enjoy our little girl and not think about the heart defect too much. There will be a time that the trial will be complete. An in our more clear-headed moments, we do not fear for the life of our child. That is something worthy of celebration.

And the celebration continued the following day. The audiologist’s findings are that there is NO EVIDENCE of hearing loss in Julia. The right ear passed immediately and the left ear shows mere signs of fluid that can be remediated in many ways.

My baby will one day enjoy the symphony with her mommy and daddy.

So tonight we will celebrate, rest and hit it again tomorrow.

Tagged with:
 

So Far, So Good…

On October 7, 2010, in Julia's Journey, Personal, by Chris

I took a couple of days off, putting down my camera and computer, and simply enjoyed the new addition to the family. A new rhythm is beginning to develop in the house, and I can’t express how marvelous it is to have Julia home. There is not a lot of sleep; we just haven’t gotten the hang of it yet. But there is the joy of not having to schlep to the NICU twice a day; and knowing that, for now, our daughter is safe.

Not that we are not spending time with doctors. It is amazing the crush of appointments our little girl has been a part of. But here is where I’m glad to give you some very encouraging news: Julia had an appointment with a blood specialist regarding her platelet condition, who told us that her count had almost doubled since the last blood sample. This is great news, since we have some evidence now that the whatever was destroying her platelets is beginning to resolve itself. We’ll need to take another blood count on Monday, but we felt like this was a great win and one thing we can take off our list of concerns!

Perhaps the most encouragement came from our meeting with Dr. Elliot Weinhouse, a specialist in pediatric cardiology. We first met him a few months ago at Julia’s multidisciplinary consult (a collective meeting with all of the disciplines surrounding Jocelyn’s pregnancy and Julia’s heart and genetic condition). I have met him a few times since then and have been impressed with his deep concern not only for the child, but for the well-being of the parents as well. His regard for life can only be described as… reverence. These are more than cases for him, as evidenced by the pictures of all of the children he has treated over the years that cover all four walls of his office. In our first meeting with him in June, he used Julia’s name without our prompting him; and from that moment, his stock went way, way up in our minds.

Julia went to meet with Dr. Weinhouse today for an echocardiogram (basically an ultrasound of the heart) and a consult on her situation. An Orthodox Jewish rabbi in his off-hours (I believe), he spoke in glowing terms of the essential beauty of the structure of Julia’s heart, despite the malformation that was again confirmed in the ultrasound. He described her ventricles – the lower chambers and the area of primary concern – as symmetrical and sound. The blood vessels entering and exiting are well formed and free of defect, and the conjoined valve that will eventually be separated is sealing very well.

From a symptomatic standpoint, Julia is showing no signs of distress in her breathing and none of the discoloration or feeding issues that one would expect. We were especially encouraged when Jocelyn noticed one of the notes on his chart: “So far, so good.”

The game between now and the surgery is a race to a body weight of eight and a half pounds or so before the symptoms manifest themselves to the point of danger to her life. The ugly truth is that without intervention, Julia is on a slow boat to congestive heart failure – a term that is not quite as scary as it was. The process will be a slow one, and delayed by short-term drug intervention. But we have our marching orders: Get this kid to eight or nine pounds, and surgery can proceed most safely. If you are the praying type, please ask our Creator for a long delay in the symptoms so that Julia’s soul can remember as little discomfort and distress as possible.

On a more personal note, fatherhood is beginning to settle in on yours truly. I carried my daughter today through the examination – from the weigh-in through the echocardiogram to the EKG. I have heard her squawk in indignation at the pokes and prods by the NICU staff and was beginning to feel a little less sensitive to them. But this morning I was thunderstruck when I saw tears in my daughter’s eyes for the first time as the technician pulled off the leads of the EKG.

Amazingly, after everything that we have been through thus far, today was the first time I cried for my daughter.

Tagged with:
 

Homegoing

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

It amazes me that a child that was watched and nurtured by a team of highly trained health professionals has now been entrusted to a clueless white guy. It’s probably mitigated by the fact that he has a very attentive wife and a registered nurse mother-in-law with 40+ years’ experience in his corner. Yeah, that’s it. It’ll be hard for him to screw this up.

Thirteen days, eighteen hours and fourteen minutes after her birth, Miss Julia Paige Cook greeted the world outside William Beaumont Hospital. Turns out she didn’t need a car bed after all and we took her out in the car seat we came in with. She has lots of doctors’ appointments between now and her heart surgery; but for today, our family is together and at peace.

I think the pics say it all…

Thanks for following us through this part of the journey. There will be much, much more to come. I’m going to go kiss my baby and thank our Creator for the way He has helped us thus far. And the future? I say…

Bring it.

Tagged with:
 

Sorry for the lateness of this update. I’ve been choosing sleep over creativity lately; but I did want to give you a thumbnail sketch of the goings on over the last couple of days. The good news is that although Julia’s platelets are still an issue, the consensus seems to be that it is a transient thing. She may require further transfusions, but apparently these issues eventually work themselves out and all she’ll need is a little “top-off” once in a while.

I wanted to give thanks to the women who made the burden of the last few days a little lighter (and certainly saner). Robyn ran interference with our fragile emotions on Jocelyn’s discharge day when we had to leave Julia in the NICU. The weekend visit with Aunt Jennifer – Jocelyn’s sister – went great and she did her best to load us up with marvelous, carb-laden food and made quick work of our laundry. Jo-Ann is a close family friend and encourager of Jocelyn’s and took over when Jen headed back to Dayton on Sunday. Both took time from work and family to do something I simply could not. They provided experience and context to Jocelyn and a necessary back-stop against the mass of information and advice coming at her. There are no finer friends than those who come when you need them – even when it’s inconvenient. Jennifer and Jo-Ann are pictured below.

A lot has happened in the last couple of days. Julia has been moved out of an incubator and into a “big girl bed”. The goal is for her to maintain her body temperature for a minimum of 48 hours, and another hurdle for bringing her home will be cleared. They have also removed her intravenous fluids, so the only way she is getting nourishment is the natural way – by the breast or the bottle.

We had a consultation with a lactation specialist, neo-natologist and a pediatric cardiologist today and basically have our marching orders. The number one goal (once the body temp thing is assured) is taking advantage of the “honeymoon period” I mentioned in a previous post where Julia has enough energy to feed and grow. Calories are number one here, and goals have been set to make sure that happens – even to the point of supplementing with fortified formula when Mom’s milk supply can’t provide it. Volume is also a priority. Julia’s belly is only so big and can only take so much. A plan for a baseline of just under an ounce per feeding, with a goal of going over that as soon as possible.

Julia is happy to take nourishment from the bottle, but a little lazy when it comes to taking it from Mom. Coaching and encouragement from Maria, our lactation specialist has helped. We also have another secret weapon coming into Detroit Metro Airport this afternoon: Grandma Nancy – a labor and delivery nurse with forty years’ experience, lactation consultant, and professor of nursing at Texas A & M. When Grandma comes to town, little Julia ain’t gonna know what hit her!

Bottom line, we are hearing a shift in tone from the medical staff – from optimism of how well she’s doing to a focus on getting her growing and thriving as soon as possible. It’s encouraging and a little chilling at the same time. We’ve moved from simply clinging to life to the new challenge of preparing for the oncoming surgery and the tougher days in between.

And Happy Birthday to my sister Lauren! Sorry this is the best I could do for a b-day card. Can’t wait to see you next month!

Tagged with:
 
Page 4 of 512345

© 2010-2016 Chris Cook
All Rights Reserved
PageLines