On January 18, 2011, in Julia's Journey, Personal, by Chris

Hey everyone! Sorry for the radio silence. Jocelyn, Julia and I got the rest we needed last night and the day is progressing well. But before I get into the details of today, let’s get a little recap of yesterday.

(ed. note – For the uninitiated, some of the pics at the end of this post are pretty tough to look at; but understand that the experienced eyes are saying that she is looking and doing surprisingly well.)

Okay, here we go: At around 5:45am, I tucked my little girl into my overcoat and took the short walk from the International Center where we had stayed the night to the second floor Pre-op suite where we had been told to report. It was certainly chilly, but Julia was in her usual good morning mood and was content to coo and gurgle in the warmth. I tried not to think too much about the day ahead, as there was little to feel but the dread of the marathon day that lay before us.

Interestingly, we got there before the staff did and were directed to one of the waiting areas by a volunteer. It wasn’t long, however, before the whole floor was abuzz with activity. We were brought into one of the pre-op rooms and they took a few vital signs and asked a lot of questions to be sure that her condition hadn’t changed from the consult on Friday.

We changed her into a little hospital gown and the whole time there was an interesting dichotomy: Julia was cool – her parents were a mess.

Then there was the consult with Dr. Walters, the Chief of Cardiovascular Surgery at Children’s Hospital. We’ve only met him once before, and we were again blown away by his concern and expertise. He took some time to answer our questions and also outline the “touchpoints” of the day where he would send word of the major milestones during the procedure. We would get word when the anesthesia lines were in, when the first incision was made and when she was put on and taken off the heart-lung bypass.

I don’t want to overstate his ability, but various staffers later told me that they have come to Children’s to work under him specifically. He is clearly a brilliant man, but had the humility to know where that talent comes from. We took a little time to ask God for a successful day with a minimum of discomfort for our little girl.

Then came the gut-wrenching moment that we were told that we needed to give Julia her kisses and let her go. A good medical staff knows that there is more than one patient in the mix when there is a child involved, so they gave us some time and privacy to get our mess together after I laid Julia in Nurse Colleen’s arms. Like you may have seen on yesterday’s Facebook or Twitter post, it was unquestionably the hardest thing I’ve ever done. And it’s probably not the first time that I’m going to have to, in one way or another, lay my kid’s life into the arms of another. That’s a blog post for another day.

Then came the waiting. And waiting. And waiting. We diverted our attention with the myriad well wishes on Facebook, text and comments on the Blog; and probably gave ourselves whiplash when a hospital staffer would walk on the floor in anticipation of news. The eight hours kind of flew by as I look back on it; but I’m sure it dragged interminably as it was happening. Nurse Colleen would come out with a reassuring smile and give us some morsel of information, and I would dutifully text it out to a distribution list of 20+ people, Twitter and Facebook. I’ve honestly lost count of the places and people who were praying for us, but you’ll be seeing a few of them in an upcoming post as well. And yeah, we all cried together when we got the news that her heart was beating again.

Then Dr. Walters came out and gave us his assessment of the surgery. He was very pleased with the structural repair (you can get my thumbnail sketch of what he did in a video post I did in November). He was a little more watchful of a not uncommon condition where Julia’s heart rhythm had to be helped along with a pacemaker. It typically resolves itself over the next couple of days, but we’d love your prayers that it does.

Not long after that, we were taken for the “drive by smooch” as they took her to the elevator from the surgical suite to the Pediatric Intensive Care Unit (PICU) where she would begin the long recovery process.

We had made it a point to prepare ourselves for what we would see at that moment. We’ve seen the pictures on the blogs and websites of parents who have done some good work to demystify the procedure. I even got a kind message of preparation from the father of the little girl that we had met through Dr. Weinhouse.

But it changes in your heart when it’s your kid. It’s no longer an abstraction. You know at that moment that you have some serious skin in the game.

Okay, gang. It gets a little ugly now. I’ll want you to scroll down a bit…

Believe it or not, what you are seeing is a good outcome of open heart surgery. And as I look at the images again, I have to admit I’m getting a little water in my eyes; because all my untrained eyes can see is a mass of tubes, sensors and wires with my baby in there… somewhere. The staff had to have seen our shell shocked demeanor, because they went to great pains to tell us that she looks great (and somehow managed not to cross the fine line into patronization).

The rest of the story has yet to be written, but the last twenty-four hours have been kind of a blur. Julia has recovered from the surgical anesthesia and has opened her eyes and moved all of her extremities. Neurologically, she’s good. In fact, she’s been moving a little more than the staff would like and they have adjusted her pain medicines to keep her quiet and comfortable. Today is commonly referred to as the “coast” day where they give her a chance to chill out and recover.

She responded to my kisses on her forehead (my goatee is kinda pokey!) and she seems to calm when we sing to her. She’ll give your finger a squeeze and open her eyes when she hears Mom and Dad in the room. The staff has removed the first tube from her called a Left Atrial Pressure Line, which directly monitored the pressures in her heart to make sure that the repairs were holding the way they should. She has also begun feeding via a nasal tube, which is a big win! The sooner we can move her from IV to mamma’s milk, the better!

Here’s the reality: Julia has to tell us and the staff when she’s ready to come home, and she will speak to us in a language that I can’t comprehend. It’s a dialect of blood counts and chemistry, oxygen saturations, pressures, feeding volumes, fluid output, and a dizzying array of numbers and waveforms that takes an army of medical professionals to decipher.

We are assured that she will ultimately be fine, and are glad that more seasoned professionals are at the helm on this. Because in my limited experience it has shown to be as much an art as it is science – the doctors in an intricate dance of fluids and pharmaceuticals with our Julia to ultimately let us bring her home. We are on track for that homecoming, the date of which is yet to be determined, but is in the seven to ten-day range.

I honestly thought that yesterday was a marathon, but I find now that I was mistaken. Yesterday was the sprint. Now we are in the marathon, and it will take stamina and strength that Jocelyn and I have never tapped into. We need your prayer – especially on the day that they remove the breathing tube and will be unable to give Julia a sedative to keep her still. We need your prayers to hear from the doctors when the “dance” takes a different cadence from our expectations and they continuously adjust plans and respond to new outcomes.

God is in this with us and this little family continues to feel his calming presence – especially through your kind prayers and notes of encouragement. We are hanging on and will not come home until our little girl says so.

Thanks again for your care and encouragement!

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9 Responses to Marathon

  1. Laina says:

    Thanks, Chris, for posting this message with pictures. It is such a relief to know what is going on and to see that Julia looks so good and is progressing so well! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  2. Rita says:

    I cannot tell you how much the three of you are on my mind and in my heart BUT now I know that I need to be thinking and praying for a TEAM of people that surround you and watch lovingly and carefully over Julia.

  3. Pam Marshall says:

    You will do this one day at a time. Not looking to the future, but staying in the now. Remembering that God gives you the sufficiency for the day, not the week. This little life has already touched so much of us…and will continue to as you chronicle her journey to full recovery. I am praying to that end….and look forward to all of your updates. Children sure do help us “grow up” and leave behind any immaturity we managed to hang onto into adulthood! You all will come out of this changed for the better…not just your little sweet princess!! I know that is hard to believe now, but it is so! Hugs, Pam

  4. Lisa Cook says:

    I have no doubts – you three have got this. I was on the mountain today, snowshoeing. My friend was careful to let me know that we could leave anytime I needed to reconnect with Julia’s progress, and those word’s slipped out : “No, they’re OK, they’ve got this”. I can see her light shining in these pictures.

  5. Laurie Cook says:

    So glad to fill in my day’s imaginations with these images and your words, Chris. And even with all the leads and tubes, even to this untrained eye, Julia does look good! I know you’ll hang in there, and take care of one another. Glad you (we) are all on this side of the operation, finally.

  6. Malisa Peters says:

    I just cried when I saw the pics.. I can’t imagine how difficult these past couple of months have been for you guys! Praying SO hard for the quickest, smoothest recovery possible. You are right, you have SO many who love and are praying for all of you through this.. you never leave our thoughts for long! Keep pressing on to finish the race with perserverance, faith and hope for the future!

  7. alice forrest says:

    We are in awe…the angels are surrounding you all and we will continue to pray throughout the day and night.

    We send you our love and healing energies.
    Alice and Jim
    Puerto Aventuras, Mexico

  8. Amazing. I have to agree, it’s wonderful to see our Julia even amongst the tubes, knowing they’re doing vital work. We love you all! And we continue to proud of your strength and perseverance…knowing from whom you draw strength. Amazing.

  9. Michelle Timpf says:

    Thank you for posting this update and the pics! Really tugged at the heartstrings reading this and seeing the pictures…..but am so very thankful and praising God that Julia’s surgery went well and am continuing to pray that her recovery goes just as well! She truly is such a beautiful, precious little girl who I know has touched the hearts of so many already…..including mine! I just love her…..

    Thinking of the three of you and praying for God’s healing for Julia and God’s peace for you and Jocelyn!

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