Wednesday, May 11, 2011

heart day

It's one thing to be sick or physically hurting yourself. When I was nine, I broke my back, requiring a backbrace, therapy-you name it. That event set off a long struggle of back issues. I am certainly no stranger to pain. From very young, I have never been able to swallow pills-tic tacs-m&ms (it was an absolute crime to have to practicing swallowing on m&ms...such a waste). As a result, I became a big fan of simply toughing it out which extended into my childbirth experience where I chose to go without an epidural (this was while being induced...for 31 hours). When I am sick or hurting, I simply keep going because that's all I know.

It's an entirely different matter when your spouse is sick. Aaron is perhaps the worst sick person that I know. He is a go-go-go type of person, so when his body crashes, the whole world around us shakes from the fall of the workaholic giant. He insists that he's fine, but he's not. He won't let me feed him or baby him-because oh by the way he's fine. "Doctors are for the weak" and I'm pretty sure Aaron hasn't been to a doctor since he dislocated his shoulder skiing a couple winters ago (after which I practically had to dislocate his other shoulder just to get him to slow down and take care of himself).

But no matter how tough it is working through a physical ailment of your own-or reminding yourself that marriage is forever when trying to reason with a sick spouse-all of that drama absolutely pales in comparison when it comes to your child being hurt, or sick, or even uncomfortable in the slightest.

I'm convinced that part of the reason child birth is so painful is because your heart is using the opportunity to grow an extra chamber-to feel emotions that you've never felt before as you strive to take the very best care possible of this tiny infant intrusted to you. This new chamber of your heart houses concern, love, fear, an incredible imagination that always pictures worse case scenario, a fierce protective nature willing to do whatever it takes to ensure the safety of your child.

And yes, Addison is sick right now. She is miserable and I wish I could take away her pain and get my happy toddler back, but that's not even what I'm primarily talking about right now.

One year ago today, I handed my tiny daughter to an anesthesiologist who in turn handed her to a heart surgeon who was attempting to close a very large hole in my baby's heart. It's ironic because if this was any normal child's heart, they would have let the holes close slowly over time (they only did one with this first surgery)-letting it take years if necessary. But because of her high pulmonary hypertension, they knew they needed to close the hole to ease some of the pressures that were at sky high levels inside her very little chest. They went in from her back-from behind her left arm knowing that they had to do the surgery as quickly as possible to minimize the risk of death on the operating table (high pressures aren't something you want to mess with).

There is absolutely nothing that compares to the feeling of having your baby in surgery. Knowing that the life of your child is in the hands of medical professionals-there's nothing you can do to assure yourself a positive outcome or even tip the scale in your favor. Even just the fear of being put under and all of the risks associated with it are nothing compared to the thought that the very organ that pumps life into your baby's body is being handled with the hope of making it better but the risk of losing it all is so real you can taste it.

Imagining the open and exposed body of the small body that you have nurtured and loved, at the mercy of the surgical team-praying and hoping that this won't just another number to them that might end as one of the failures where the patient leaves the OR lying completely under a sheet.

That new chamber of your own heart that was grown just to feel all of the new emotions that accompany motherhood is filled with so much pain that it makes you want to rip your own heart and give it to your child whose body struggles to function on her own.  When those blue eyes bright with pain slowly blink open in the Cardiac Intensive Unit-the frustration from being unable to take your child's hurt away-the fact that you can't even hold or move her due to all of the tubes and wires connected to make sure that a machine breathes for her even when she can't on her own-the knowledge and fear that it isn't over, that these next hours are so critical whether she lives or dies-the relief that you are able to see your child alive again, that motherhood is not over for you, that hopefully this means that your daughter can finally come off of 24 hours of oxygen a day-all of these emotions combine to create more pain for yourself than you ever thought physically possible.

There is truly nothing like having a child in surgery-the fear, the hoping, the desperate prayers.

But in all reality, it's one of the best experiences for a parent, any parent. Because each of us recognizes somewhere in our knowledge base that we can't control whether our child lives or dies. We do the best we can, but the ultimate care and safety of our child is not up to us.

Trust. Trust in an almighty God who created the life of our child to sustain that little life as he sees fit. Trust that the outcome of whatever the circumstances that there is a bigger plan set into motion by someone much bigger than ourselves.

Every parent should know this, but the ones who hand over their child's life to a surgeon-that parent is forced to face the bitter reality. Their child's life is not their own. That parent is put under fire to see if the trust is really truly there. The Lord has a plan for each of our kids, and sometimes the hardest thing to do is to stop doing and simply trust.

That is what surgery taught me. One year ago today. That is what I remember each time I look at the scar on my baby's back. The memories flash through my mind every time the doctors now listens to her heart and says they can't even hear her murmur anymore. The thankfulness that floods my heart every time I remember the oxygen battle and how that surgery got us closer to being done with it.

I am thankful-for the brilliant surgeon and medical team at Boston Children's Hospital, but more importantly, I'm thankful to the Lord for choosing to bring my little Chubbs through her heart surgery successfully. Because he is good. All the time. Even when your baby needs heart surgery.

Happy heart day, sweet Addison.


  1. Ohmygosh, a new chamber of your heart!!! So beautifully, eloquently put. I love that imagery, and would love to believe that it's true. And it is true that after Samantha was born I discovered that I felt things I had never felt before.

    This is a fabulous post.

    Happy heart day, beautiful girl (and feel better soon!)!! This will be a day you'll celebrate forever. :-)

  2. so well written!!! Yes that is what it is like exactly! Happy Heart Day Addison! I think I will always celebrate Reagan's heart day too.

  3. Wow! I can't say much more than that. We, my husband, Lydia and I, are facing open heart surgery in the very near future, and quite honestly, when I stop to let myself think about it, it TERRIFIES me. I remember so clearly when my 13 year old had his tonsils taken out a few years back. How scared I was (even though I had mine taken out when I was much younger than he was) and how in the days following, when he would wake up each morning crying because it hurt so bad, my heart hurt because i couldn't take that pain away. That was his TONSILS! I read so many stories about babies who have had this surgery and they all come out just fine, but those babies are not MY baby. My sweet, huggable, cuddly baby girl. Thanks for being honest..and letting me know that I am not alone in my fears. I know that God is good, He's already brought us so far.....happy heart day, baby Addison!

  4. Beautiful post...I too, loved the new chamber of your heart phrase. You have a wonderful way of expressing yourself and your feelings Deanna. That picture of Addison has me in tears. I cant even begin to imagine how difficult that would be to watch your child go through.
    Happy Heart Day Chubbs!! Feel better soon!

  5. So intense! I am so grateful, just like you...Poor little girl and poor stressed out parents who were just fearful of loosing someone precious and dear.

  6. Happy Heart Day Addison!

    was this a PDA repair? Claire's was fixed at 9 days old to try and get her a little bigger for her OHS. Still, even a 'little' heart surgery is scary!

  7. Well written!
    You know, I remember bloggin’ and praying about nothing but the surgery before Eslea's. I even wrote that I had to come to peace with the fact that by the time it was over Eslea "would be in the hands of her father. Whether it be her earthly father or heavenly one." I do think that surgery changed me as a person, a mom, and a Christian.
    Beautiful Deanna!

  8. I absolutely love the notion of childbirth being a time to grow a new part of your heart.

    I completely agree. It is the single most transforming thing I've ever gone through.


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