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:
 

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.

Tagged with:
 

A Special Visit and a Loud Holler!

On October 10, 2010, in Julia's Journey, Personal, by Chris

Happy 10-10-10 people! Julia’s actual due date (the day before) came and went with little fanfare, and she is continuing to feed and grow well, albeit a little slowly. We are hoping that now that her feeding schedule has turned to a more on-demand cadence, her weight gain will be more robust. We are also looking forward to (hopefully) final visit and clean bill of health from the hematologist tomorrow.

The past several days have been punctuated with visits from some dear friends – many of them generously bringing a meal to ease the transition of Julia’s arrival. Jocelyn’s small group has been right at the forefront with some of the most amazing meal! It’s great to get some recipes that are out of the normal routine. I have to say that most of the offerings have been marvelous comfort food that is going to seriously impact my weight loss efforts (20 lbs. so far!).

But the most distinguished visitor we’ve had (for me, anyway) was my father. I gotta say that I didn’t know I would feel the pride that I did when Jocelyn put Julia into his arms. Bob is a guy that has a lot on his “resume of life” – husband of over fifty years, caregiver to his bride until her passing, father of four, cancer survivor – and now he can add another life to his legacy. Julia is his second granddaughter; and after watching his son marry later in life and being so supportive throughout, I felt an amazing sense of the weight of the moment as he cradled my daughter in his arms.

I hope you’ll indulge me with a bunch of pics of my dad and his granddaughter, but scroll down. There’s more!

Another big development is a change in Julia – something of a surprise, really. Since she was born, she’s been the picture of congeniality. Even the NICU staff loved her during her stay because she was a very quiet and amiable little girl. Of course, there were the cute little chirps and sometimes more insistent squeaks when she needed a bottle. It was only when she was in pain that you would hear her really use her pipes.

Here’s the deal: In the last twenty-four hours, Julia has found her holler! It started last night when she decided to let her sleeping parents know that she wanted food and right away! It has persisted on and off throughout the day – especially at feeding time. Who would have thought that our perfect little princess could generate the volume she does (yah – I know that’s a new dad talking!). It’s actually a pretty good sign considering her heart condition that she has some energy to burn and is willing to expend it! We continue to be hopeful for her as we look forward to a night punctuated with a howl or two from the nursery!

Okay – here we go. Jocelyn is putting her down for the night as I write this. Wish us luck!

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:
 
Page 18 of 21« First...10...1617181920...Last »

© 2010-2016 Chris Cook
All Rights Reserved
PageLines