Day 16 is a special day for one of Xavier's heart brothers...BODIE turns 3 today!!! Read all about his journey!!!
HAPPY BIRTHDAY BODIE!!!!!!
MEET BODIE!!!
Today, my son turns 3. Like every mom of a toddler-turning-into-a-boy, I look at my son and wonder where the time went. I look at this amazing little man and consider myself incredibly lucky to be his mom. I delight in his silliness and roll my eyes when he does silly boy things. But unlike most moms, I don't just see my little boy. I see my hero. I see the bravest, most courageous little boy I've ever met. I see hours spent by his bedside, just willing him to keep fighting one more day, begging God for the medicines to keep working, to keep him alive, to give me a chance to meet my son. I see so many miracles in every step my son takes. Everytime he tell me "mama, I love you," I am reminded how blessed I am.
My son's story began on October 1, 2009, when 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 low 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.
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 6 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! He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home! On at a few days shy of 7 months old, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. Although he came out of surgery intubated and on nitric oxide (to help with his “twitchy” pulmonary beds), by all accounts the surgery was a success. He was extubated the next day and home 5 days later!
That surgery was in September of 2010. In the over 3 years since then, Bodie has spent exactly 4 nights in the hospital, all related to medicine changes to treat arrhythmias, and that's it!
He has celebrated his first birthday
And his second birthday
And today he turns 3! So yes, please forgive me if I walk a little taller today, smile a little bigger and tell everyone who looks my way how incredible my son is, what a blessing it is that today, he turns 3. What an incredible journey he has had after such a rough start! I have to be honest. I know a lot of kids, like Bodie, who aren't just surviving, but THRIVING, with HLHS. I know a lot of kids where, like Bodie, you'd never know what they'd been through if they didn't show you their scars. But I don't know anyone who had the kind of complications my son has had and yet has battled through to live such a "typical" life. I don't know why we got so lucky, but suffice it to say, we are beyond blessed. Today, Bodie's life is blissfully, wonderfully, normal. He goes to a pre-preschool program 3 mornings a week, loves to play at the park, talks a mile a minute, is smarter than a whip, is obsessed with cars, trains and most of all, garbage trucks, adores his big sister and loves to DESTROY anything and everything. He is ALL BOY. And we are beyond grateful. He is truly a modern day miracle and we never forget that, particularly today of all days. We know that things can change at any time, so today, we revel in how great things are.
Bodie's Fontan surgery, the "final" open-heart surgery in the 3-stage palliative surgeries used to treat HLHS, will be this coming summer. It frightens me to a point I cannot quite put into words. But I know that God is in charge of my son's destiny. I know that God is in control. So we carry on with optimism. We focus on how much better his life will be after this next surgery, on how many heart warriors have walked this path before us and done SO WELL with this surgery, on how, once we're past it, for the first time in almost 4 years, we won't have surgery hanging over our heads!
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! Happy Birthday to the bravest little miracle I know. Thank you my sweet boy for coming into our family and blessing us so profoundly with YOU. We love you!
"You never know how strong you are until being strong is the only choice you have."
www.hopeforbabybennett.com - how the journey to mend our son's broken heart changed our family forever...
www.sisters-by-heart.org - supporting newly-diagnosed HLHS families...one precious heart at a time...
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