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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Thankful

On November 25, 2010, in Life, Personal, by Chris

The heavy rains of the day have subsided and I’m curled up by the fireplace in a rented house up on Cass Lake for the holiday. Epic sessions of Yatzee and Mexican Dominoes are in progress among the generations. Jocelyn’s entire family has gathered here from as far away as Texas to be together for Thanksgiving – and also to meet Julia. There was no way we could fit them all in our 900 square feet in Birmingham; so instead of holing up in hotels, we decided it made more sense to rent something we could all be together in.

I’m one belt hole bigger after a dinner, masterfully prepared by Deirdre, my sister-in-law. She has an uncommon passion for food, having brought many of the ingredients for the stuffing up from Ft. Worth in her luggage. If you get invited along on a restaurant crawl with her, clear your schedule!

The carbs and tryptophan are starting to take their toll, but I couldn’t let the moment go by without sharing a few of the things I’m thankful for – just in the past week:

It had been a tough week of feeding for our girl. Very often, the routine has been (1) Feed (2) Burp (3) Cough (4) Hurl. And far too often, we saw all of our care and feeding come splashing on the floor, followed closely by a frustrated howl from Julia. The pediatrician has diagnosed her with acid reflux (pretty common with kids this age) and has put her on yet another medicine to make her more comfortable.

Despite the challenges, Julia still gained four ounces and is on a fantastic growth curve. The meds continue to work as intended; and Dr. Weinhouse, the specialist overseeing her heart condition, is very pleased. We gathered in his office after the consult to pray together in thanksgiving for Julia’s progress.

We got a bulletin from a church we have never heard of in the mail. There was a note written on it from a friend of a friend that they had heard about Julia and put her on the church’s prayer list. We often hear about people praying for Julia, but the note brought into focus the kind of love and concern that folks can have for someone they have never met. By my last count, I know of people gathering to pray for Julia in the U.S., Mexico, Greece, the U.K., and India. Humbling.

We have received countless casseroles and pot pies from well wishers that have allowed us to not think that much about preparing meals over the past two months. It has laid waste to my weight loss regimen, but it has taken so much stress off of Jocelyn and I as we focus on preparing Julia for the upcoming surgery.

And as a confirmation of the richness of the community that God has blessed us with, in the time it has taken me to write this post, I’ve received three text messages from friends wishing us a happy Thanksgiving.

A wise friend of mine has suggested that the first step toward a life well lived is to take an intentional step toward gratitude – be thankful for what you have and not angry about what you do not have. Today, we all have the chance to do that (before the carnage of Black Friday) and step more fully into the stream of beauty that awaits. Sometimes in the pursuit of happiness, we just need to stop and be happy.

Thanks everyone from the Cook family!

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Visits – Docs and Family

On October 26, 2010, in Julia's Journey, Personal, by Chris

A lot has happened over the last week, the most exciting of which is that we really feel like we got our team to do Julia’s surgery. We met last Thursday with Dr. Henry Walters, the Chief of Pediatric Cardiac Surgery at Children’s Hospital of Michigan. We felt utterly taken aback by his humility and concern. He spent time with us, explained her situation and how the defect would be repaired (amazing! and will be explained in a video I’ll be posting soon).

We have our tentative surgery date – January 17th – the countdown of which is on the widget at the upper right of this webpage. We also have our marching orders: body weight. The tissues that the surgeons will be working with are as thin as Kleenex, and the more weight we can put on Julia, the stronger those tissues will be. The goal is a minimum body weight of 4 kilograms – or eight pounds, twelve ounces – but getting her over ten pounds would be better. That will be a tall order considering she’s so petite, but we are going to take a serious run at it.

As Julia’s symptoms progress, the feeding will become more of a challenge. It’s like trying to eat while running wind sprints. So we will be very watchful over the next couple of months.

In the meantime, Julia is eating well and taking visitors! My sisters, Lauren and Lisa, along with my nephew Zach and my Dad came over for dinner on Friday. Our dear friend, Alice, came the following day. We even took advantage of Sunday’s nice weather and took a stroll around the block. Sometimes, it even feels normal!

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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.

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Little Bag O’ Sugar

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

A variant on the old Sesame Street tune: One of these things is just like the other! We have had some real encouragement over the last 24 hours. The visit with the hematologist yesterday went very well. Dr. Jamil has been watching Julia’s platelet condition over the past couple of weeks (you can read the backstory here and here), and we got the happy news that her count has tripled to well over 300k per microliter – well into the normal range! There will be a final follow up in a month, but this is a big win.

As the pic indicates, we have reached another milestone in her growth. Julia gained four ounces in the past four days and passed the five pound mark as of today! She has been eating well and the concern that we had about her growth has been allayed somewhat.

It’s amazing how these comparatively small, incremental improvements can really make my day! I even broke into a little victory dance when I got the news (a sight definitely not ready for prime time). There are going to be days where the news isn’t as encouraging; but today, it’s very, very good.

Okay – if you are the praying type of person, I have a couple of requests: Julia has a couple of appointments coming up. The cardiologist is tomorrow to continue monitoring her heart condition. We hope for continued comfort and ease of breathing and a delay of her symptoms.

The other is with the audiologist on Thursday. The NICU staff did a routine hearing test on Julia, and the findings were such that further testing is required. Granted, there are issues of her health that are far larger than this one, and the situation may be remediated in many ways. But I really, really want my kid to hear. I was listening to Vivaldi, Alison Krauss and David Gray as I was working today, and I prayed that God might someday grant my daughter the same enjoyment (okay, maybe different music). I’d really love it if you would join us in that prayer.

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