Tuesday, August 24, 2010

The Half a Heart that Changed our Family Forever (Bodie's Journey)

Every Heart Has a Story
A fellow heart mom created a special event for all of us - the "Every Heart Has a Story" event. It is a wonderful forum for heart moms to share our stories with each other and meet those with similar challenges, hopes and fears. For more details, click here.

I know many of you have heard our heart story already, but for those of you who haven’t, I wanted to share it…

On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously slow resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7lb13oz and 20.5in.

He had his first open heart surgery, the Norwood, on February 22, 2010.

He had a fairly rough recovery, spending 3 weeks in the CTICU and an additional 2 weeks on the step-down floor, before finally coming home at 5 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds by mouth (they were thickened), to the utter astonishment of all of his doctors and nurses. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. By the next day, he was satting in the 60's and they didn't know why, so they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor stepped in and decided to put Bodie on an external pacemaker. Within an hour, he turned around. A week later, he had his second surgery, to install a permanent pacemaker and take down his sano shunt and give him a BT shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed down to the cticu and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the cticu again in critical condition. He was again intubated and given medical support as they determined that he had an infection in his blood which turned out to be MRSA. He then spent 6 weeks in the hospital on iv antibiotics (5 of those weeks were spent in the cticu as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections). The day he finished his antibiotics, he was discharged (July 21st)!

Bodie has been home since then and is thriving. He is gaining weight, growing teeth (and hair!) and LOVING life. He will have his next open heart surgery, the bi-directional Glenn, sometime in the next month to 2 months. After that, we hope to get a reprieve from hospital stays until the Fontan (sometime between 2 and 3 years old), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS.
Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family. We could not be more blessed to have him in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love.

We love our little man and would walk this journey again in a heartbeat!


  1. Wow.. I know that I was following your blog through most of Bodie's journey so far but when you wrote it all together in one post..unbelievable. He is one strong little boy! I can't believe the rough road he has fought his way down. Always keeping Bodie in our thoughts and prayers!

  2. What a journey Bodie and all of you have been on thus far. I am so glad that he is such a fighter and has overcome so many obstacles.

    Thanks for sharing his amazing story and for participating in my blog event!

  3. It's unbelievable what Bodie and your family went through. I could never wrap my brain around what it would be like in your shoes.
    I prayed constantly for a miracle that would make it all go away, for a miraculous healing for Bodie. It was so scary and sad. So many close calls where you didn't know if he would make it through the challenges he was faced with. But he did and it is so amazing!
    I am still in awe every time I see pictures of him out and about and with his big sister. I am especially in awe at the sight of him at church with all of the people who prayed fervently for the day when he could be healthy enough to leave the hospital and be part of everyday life.

    God is good and is constantly showing His love to us. Bodie is a living testimony of that love.

  4. Wow! My Bodie! You are my miracle and I seriously could not love you more if you were truly mine! You have blessed my family as well through your journey and our children love you so much! God bless you, baby! Loads of love: Nairi, Michael and kids

  5. I'm a parent of a baby boy who also has HLHS. I know what you were going through. He was born 7lbs 12oz. We live in NJ and we had too tke him too NYC. driving back and forth everyday for 5 weeks. Day and Night. Seeing all those little one's NICU make u look at life so differently. We as adults dont think too much about life until we see things like that. Our Aiden is now 4 month weighting 11lbs 1oz. May god bless you and your family. Your son will be just fine. he has fought all this time and he will keep on fighting. our son goes for his second surgery in jan/Feb.

  6. We found out today that our unborn daughter has this same condition. We are born again christians as well and are in a state of shock at this point. We are praying that our little girl will grow the other half of her heart but are trusting that God will walk us through this path regardless. I would love to be able to ask you questions as we go through if you'd be willing. amyakoslowski@gmail.com