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 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.
Our sweet boy, Bodie Isaac Bennett, was born on February 16,
2010 at a hefty 7lb13oz and 20.5in.
He had a fairly rough recovery before finally coming home at
6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds
(thickened) by mouth. 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. The next day, 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 decided to try pacing
Bodie externally. Within an hour, he turned around. A week later, he had his
second open-heart surgery, to install a permanent pacemaker and change out his
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 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 MRSA infection in his blood. 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 September 13, 2010, at 7 months old, Bodie underwent his
third open heart surgery, the Bi-Directional Glenn. By all accounts the surgery
was a success. He was extubated the next day and home 4 days later!
Bodie has been home since then (other than a 1 night stay
for a virus induced tachycardia (high heart rate) in August 2011) and is
thriving. He is now a rambunctious almost 2 year-old. He LOVES to climb (on
ANYTHING) and is in a perpetual state of motion – we call him the “tornado with
legs.” Honestly, other than getting more winded than your average kid (which he
doesn’t let stop him AT ALL) and giving him meds 3 times a day (which is no
harder than giving a kid Motrin or Tylenol – it’s not nearly as bad as it
sounds), he’s just like any other little boy. If you don’t see his scars, you’d
never know what he has been through. He is a ball of fire and keeps us laughing
all day long. We are loving watching him grow up with his big sister.
We know Bodie has at least one more surgery in his future,
the Fontan (probably Spring/Summer 2013, although it’s really up to his body
and when he needs it), the "final" surgery in the 3-stage palliative
surgeries used to treat HLHS. And he will need pacemaker maintenance for life.
But our lives are so normal right
now. When we embarked on this journey, I could never have hoped our lives would
be this good. 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 Bodie 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!
Click here to read more about Bodie!
Click here to read more about Bodie!
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