Sunday, March 20, 2011

Holding Our Breath

Hello! This is a note from Kristin on the night before little Wolfie’s big surgery. I’m sorry to have been absent from the blog for the past several days, but my husband, in the meantime, appears to have perfected the art of blogging. I particularly liked being linked to a picture of Mr. T.

First, I wanted to share with you that every night between midnight and one in the morning, I sit down to read Jason’s posts and all of your comments. It’s hard to describe the peace that they bring me…it’s as if I’ve been holding my breath under the water of beeping alarms, doctor’s lingo, and blinking monitors all day, and your prayers, wishes, thoughts, and funny comments help me come up for air.

Sam has apparently decided, at least for the day, to come up for a little air. After watching him crash yesterday roughly every half hour, I was on the verge of melting down. My least favorite moment came while I was holding him, and his pulse dropped as he stopped breathing entirely, turned blue, and went completely slack in my arms. The nurse instantly grabbed him from my lap, patted his back vigorously, and gave him some oxygen. He came back pretty quickly, but he turned such a frightening grayish blue that the doctor was called in. Apparently, he gets “too comfortable” when being held and forgets to breathe. So we left him in his bed for the rest of the day and night, propping him up and pounding his back each time the alarm sounded.

So today, I was quite hesitant to pick him up. Instead, I tickled his hands and feet and rubbed his chest and belly. Our new nurse, Clay, saw me doing this, and asked, “Would you like to hold him?” I explained what had happened yesterday and how the other nurse had suggested just leaving him in his bed to play it safe. Clay simply replied, “Today’s a new day.”

And it was. I held him for a long time as he breathed peacefully and remained a nice rosy pink. After dinner, Jason held him, too, and as we rocked him and watched March madness, it almost felt like we were in our living room, just the three of us, instead of in a cardiac intensive care unit.

I feel quite lucky to be this little guy’s mom, and though the past few days have been challenging, they have also been the best days of my life.

To Samuel: You are a tough little lion. I wish you the best of luck tomorrow, and Mommy will be right here when you get back. Until then, I will stand here in the quiet eye of the storm, holding my breath and loving you.

22 comments:

  1. Hello: I found your website through Matt Hammitt's website. My name is Maribeth Gillis. I will be 26 yrs. old on April and I, too, was diagnosed with HLHS just 2 days after I was born. It's a "long" story that you can find on my blog but needless to say, the Lord has definitely blessed me throughout my life and I want to be able to encourage you and your family through your journey. If you have any questions, please feel free to e-mail me at anytime at maribethgillis@gmail.com I'm praying for you and your family and look forward to hearing from you all soon :) Take care!

    Maribeth Gillis
    HLHS - 25
    Dallas, TX

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  2. joanne (still on the family vaca)March 20, 2011 at 7:11 PM

    kristen, i am in awe of your strength. you truly are your mother's daughter (KRISTIN! you didn't turn on the christmas lights!!!). i check the blog every hour, and as the page refreshes, i hold my breath hoping all is ok. i'll be thinking of you tomorrow. i wish i could be there with you, hug you, hold your hand, and make you laugh (it's amazing how you and i can laugh even during the hardest times). but i know you are blessed to be surrounded by some of the best people i know. i love you.

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  3. your friend joanne, the idiotMarch 20, 2011 at 7:12 PM

    *omg, i just spelled your name incorrectly... how long have we known each other? 20+ years. i'm mortified ;-p

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  4. There are two ways to live your life.
    One is as though nothing is a miracle.
    The second is as though everything is a miracle.
    -Albert Einstein

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  5. I'm crying as I read your post, Kristin. You are amazing...and so is Sam the Man. I can't stop thinking about all of you. I'll be sending you positive vibes all day tomorrow.

    Someday, you and Jason will be sitting in your living room watching TV or grading papers...and little Sam will be running around jabbering and making you crazy. Here's to that day!

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  6. Kristin,
    You and Jason are doing so great. Tomorrow will be a day we look back on with joy as the beginning of a healthier heart for Samuel. You have all of the love, hope, and prayers that we can possibly be sending your way.

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  7. You're all so incredible. All of us in the Drown house are alternately holding our breath & breathing deeply as we think about you. So happy you got to share some family time with plenty of breath & snuggling today. Having a good, strong day going into tomorrow's big event is such a help. We'll be out here pacing for & with you the whole time.

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  8. What a beatiful boy you have been blessed with. It's been so great to read the updates as you've all been at the top of my prayers and will be especially tomorrow during the surgery. I am thinking that if I were the two of you that I would need heart surgery right along with Samuel after all you have been through. Your strength and love are making Samuel the warrior that he already is.

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  9. A Carload of GrittersMarch 20, 2011 at 9:49 PM

    Sam, tomorrow's your big day. The Goon Squad are pulling for you, from near and far.

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  10. Jason, Kristin, and Samuel
    I am praying for tomorrow to go smoothly, and I am hopeful that it will. I wanted to tell you that there is a labyrinth on the Children’s Hospital campus. Unlike a maze, there is no right or wrong way to walk a labyrinth. There are no dead ends or false exits. There is just a simple circular path to the center and a simple circular path out. I walked that labyrinth a few times during Kai’s surgery. Jason, it may not be as soothing as packing and repacking luggage, but it might help. It helped me to stay calm. I’m sure a nurse could tell you how to find it.
    Kristin, thank you for sharing your story about Clay. Until we had Kai, I never really appreciated what it took to be a nurse. Now, I am convinced that a good nurse is part clinician and part Yoda.
    I will be checking your blog often tomorrow. I would like to stop by the hospital tomorrow afternoon, but I also don’t want to intrude, so I will call after school gets out.
    All my love,
    Brenda

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  11. Even from the modest reminders you have given us every now and then in class I can tell this has been an ordeal for you, your husband, and Samuel himself. Everything you've experienced with Sam's heart defect has been leading up to tommorow's operation and, as the seconds tick away, I know that everyone's anxiety will increase exponentially.

    Moddern medicine is truely a miracle. It's hard to imagine that a meer two hundread years ago everything from a flu onto a medical condition like Samuel's was treated by bleeding the individual; a procedure that did more harm than good. Of course, such archaic tecniques have been substituted with more informed treatment that have not only cured the ill, but with frequent success. Samuel's situation is much more severe than you hoped it would be to be sure, but this procedure is not some hair-brained scheme some doctor thought up a day in advance; its a treatment that, while it still carries a large risk, the medical community (which, don't let their handwritting fool you, consists of very smart people) has used succesfully many times in the past. Samuel's situation may be quite scary, but this treatment has proved to be effective in the past and, if it works, he should be able to live out his years as a perfectly normal child.

    However, I know the medical jargon can only be so comforting when your son's life is on the line. Tommorow is going to be a massive trial; the culmination of everything you've faced over the past few months. Every step of the way something could have gone wrong that could've jeopordized his life and force the doctors to perform more risky procedures. Yet both of you have made it this far. While there have been some shocks the past few days, Samuel is in the position doctors expected him to be in and have a plan to save his life ready to be executed. Its truely a miracle of several consecutive miracles that nothing catostrophic occured the past few months that would kill him before he was even born; that sure doesn't mean one more miracle won't happen tommorow.

    I know I'm not the only one who has you in their thoughts and prayers right now. I hope that, whatever happens tommorow, everything happens that allows Wolfie to live a long and happy life. Just remember that, no matter how grim the situation looks tomorow, your AP Lit class (along with many, many others) will be with you, hiding in the walls, ready to amplify the succeses and help bear the burdons that come when the doctor comes through the door.

    Good luck, Mrs. Leclaire and Wolfie!

    -Austin D.

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  12. I really really hope the surgery goes well for Sam tomorrow! And I'm so glad he was able to be held today without getting "Too comfortable".

    My reasoning is this:
    -Mr Leclaire is awesome
    -As a result, his son is awesome (Lets assume that being awesome is a genetic trait)
    -Therefore, his awesome son has to get through this surgery! How else would he spread his awesomness to the world?

    Haha, that was my sad attempt at a joke hoping to cheer you guys up.
    Hoping for the best!

    -Kenzie Berry

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  13. He is absolutely adorable, you had us all in tears reading the blog. We will be thinking about you all day tomorrow and you willl be in our prayers.

    Mallory, Brynn and Donna Holstein

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  14. I woke up this morning and the only thing I thought of was this big day for Wofie. He will be in my thoughts all day. As I sit here in your fathers house taking care of the dogs and the house I can't help thinking of your mother. I know SJ has her strength, as so do u. You have alot of love from family and friends coming your way.

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  15. Kristen, we don't know each other but as you probably have read, I'm from the Netherlands. I came here via Bowen's Heart.
    I am full of admiration for you and your husband ... you two are such a strong and courageous couple!
    Today I've been praying for Sam, you and the doctors who will be working on him.

    I hope that, in spite of all the turmoil and stress of the operation, you will have a good day.

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  16. KK-I'm glad you are back on the blog...however, I am mightly impressed with Jason's blogs as well. We have gotten bad results when Jon takes over the blog :)

    I woke up this morning praying for you all and wishing that we could be there. I will be watching the blog all day waiting for updates (no pressure though :) We love you all!

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  17. I was amazed as I watched the two of you on Friday how you both have taken the role of parent with such grace, love, and fierce intensity. People at school have asked me, "How are they?" All I can reply is, "They're parents; they are in the role 100 percent."

    I dedicated my yoga practice to little Sam yesterday. Yogis (and Hindus for that matter) believe in a force called jivan. Which literally means breath, but a better translation is the life force God gives us through our breath. As I watched Kristin and Jason breathe on little Sam's face to startle him, this is what I thought about. The jivan you are providing, the life force, the will to stick around.

    We are here for you...let us know what you need.

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  18. Dear Aunt Kristin and Uncle Jason,
    Good luck on the surgery and tell Wolfie that we love him and we hope that he comes out O.K.
    Love,
    Tyler, Kibby,Stephanie, and Susan

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  19. Kristin, Jason, and Sam,
    Speaking of March Madness, it's been a good week for underdogs, who've proved that if you keep fighting and keep believing, you can defeat any foe. Keeping fingers crossed for Sam's surgery.

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  20. Dear Jason, Kristin, and Samuel,

    My heart is full as I think of each of you experiencing "the best of times and the worst of times." Life is such a series of contrasts, and today, as you endure what will possibly be one of the most excruciating times of your lives, I pray you will find the strength to feel the comfort, love, and support sent by all of us who care so deeply about you.

    Jason, you have been a rock throughout these past few days, and don't worry about Samuel not appreciating Shakespeare...yet. Remember, Samuel is a Lion (and a Wolfie), and when he grows stronger, I will be honored to tell him, "True hope is swift, and flies with swallow's wings; Kings it makes gods, and meaner creatures kings" (King Richard III). And I will remind Samuel how hope transformed his parents into a noble realm that has inspired us all.

    Kristin, like so many others, I was also moved to tears while reading your most recent blog post. As I read about your terrifying experience of holding Samuel and feeling his body go limp, I remembered a similar experience I endured two days after my daughter was born. I was feeding her some water when suddenly she stopped breathing and turned blue. Fortunately, a nurse was in the room at the time and grabbed her, but she could not get her breathing right away. She ran to the window and said, "My God, this baby is turning black," and then she pounded on her back, again and again. Frozen in terror, I could only watch helplessly until finally my precious Meredith started breathing. Jason and Kristen, I don't know how you have survived countless episodes like these. I can't begin to understand the nightmarish moments you have endured again and again. But I feel a strong sense of hope that today's surgery will give Samuel the fighting chance he needs to live a long and healthy life; and today, every hour on the hour I will remember that the name Samuel means "God heard," and I will ask God to make Samuel's heart strong and to bring you and Jason peace.

    So Samuel, we are all rooting for you, and our hearts beat hopefully as we wait until we can hold you and welcome you into our lives.

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  21. Hey there little Sam!

    Good luck today, buddy! There's a whole big world out there for you to see, (and a lot of great books to read!) and everyone's pulling for you today! If you're anything like your mama, I know you have more than enough strength to power though! Even those of us who have never met you know that! Today is your day Mr. Sam!!

    Hang in there Mr. and Mrs. Leclaire! Sending lots of love, prayers, and happy thoughts your way!! xoxox

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  22. Hi!

    Greetings from Susan's much younger sister, Neill Ann. Although we have never met I have been keeping abreast of you and Little Wolfie for ever so long. The name is incredibly wonderful. Having a Ludwig in our family, I can doubly appreciate such a unique name. My prayers are with your family today as they have been since learning about Wolfie's many challenges ahead. I hope to get to meet all of you this coming summer at The Schultz Compound. GO WOLFIE!!!

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