Finding Her Smile

On December 18, 2010, in Julia's Journey, Personal, by Chris

Julia has made some great strides and had an adventure or two this week. It seems like she has learned to do so much in the last couple of weeks that we need to take a moment and celebrate. One of the big ones is that she has found her smile and is using it more and more often. It began with a small lift in the corners of her mouth and would flash a quick smile at her mom. But in the last week or so, she’s been smiling a lot! I gotta tell you, eye contact and a grin from this kid and I’m glowing like the moon!

Another win is her head control and the muscle tone in her neck. It usually happens when she’s resting after a good feed. She gets her arms underneath and pushes off for a look around! She’s still working on her landing (sometimes her noggin comes down with a crash!), but she’s really starting to interact with her surroundings.

Julia also got a grand introduction to the staff at Kensington when she visited the office on Thursday. The toughest thing was having to be so vigilant on cootie patrol. I wanted to pass her around and let folks hold her and give her kisses, but we need to be so careful about her exposure to germs that we had to seriously limit her direct contact with people. There was no way we were going to keep Steve Andrews (Kensington’s Lead Pastor) away from her. We still have fond memories of him kicking down our hospital room door some sixteen hours after the delivery hollering, “Where’s my kid??”

Now the challenges that we would like your prayers on:

One part of the day that we least look forward to is the almost nightly meltdown she goes through at around 9pm. It begins with a little fussiness and escalates into a full-blown holler that is absolutely heartbreaking to witness and can last up to thirty minutes. Our theory is that she’s either working through colic or digested mucous, but it always happens around the same time of night. She’s tired afterwards, but otherwise none the worse for wear. Any experience or encouragement you can offer in the comments would be greatly appreciated.

In addition, Julia’s feeding is still an issue; and she gained only two ounces by her weekly weight check at the cardiologist. She’s still breathing very comfortably at this writing, and her spitting up pretty well under control; but it’s the first time I heard a subtle shift in Dr. Weinhouse’s optimistic tone. “She just needs the surgery.” It was stating the obvious, I know; but this may be the first time we got the clear reminder that the medications will only go so far.

Despite the challenges, we’re still watching her one month from the surgery, and we are still in awe of how she is growing. Thanks so much for your prayers. It seems the legion of angels I asked for are still doing their work!

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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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A New Milestone

On November 21, 2010, in Julia's Journey, Personal, by Chris

We celebrated Julia’s two month birthday (minus a day) with a visit to her pediatrician on Friday. She got a clean bill of health (AVSD notwithstanding) and began her immunizations. One was the same Diptheria-Tetanus-Pertussus vaccine that every other kid in America gets (please, no comments on the merits or risks of immunization – that horse has left the barn). The other was a $1000-per-dose vaccination against a common cold virus that could kill her if she contracted it. It’s amazing how just a touch of crazy is mixed into the routine of this little family’s life. At any rate, Julia let out a howl that felt like it was going to shake the walls; and I think Dad and Mom took the pokes almost as hard as Julia did.

Saturday, we did a quick photo session of our two-month-old. Not sure if the frilly dress is her style – I’ll let you decide – but she’s going to grow out of it soon enough. It was a gift from some friends and a nice change from the sleepers we’re used to dressing her in.

We took the afternoon to stroll through an open-air mall and take in a bit of normalcy (and give Jocelyn a much-needed moment out of the house!). I still marvel at the thought that this little girl wasn’t born and our lives were so different only two months ago. And we still look forward to the day that we won’t have to be so careful about Julia’s health so we can just pack up and go!

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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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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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