February 7-14 is
Congenital Heart Defect Awareness Week. To help raise awareness, spread
knowledge and share the effects of this disease, Jayme of The Paper Deer
Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home
are each sharing one story of a child with CHD every day to showcase the
trials, triumphs, journey and heartache of this devastating disease. We invite
you to read and share this project to further our voices. Thank you. #Facesof
CHD
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At Logan's two week check-up, I knew something wasn't right
when my son's primary practitioner looked concerned as she listened to
my baby boy's heart. She let me know she had heard a murmur. She was
going to have another doctor take a listen and check his oxygen levels.
She mentioned maybe making a three hour trip to The Children's Hospital
in Minneapolis some time that weekend.
Four
pulse-oximeter machines came and went from our room. I cried when I read
76. Nobody could seem to understand as he wasn't retracting, he wasn't
distressed and he wasn't blue. However, it quickly went from "you may
have to drive this weekend, to your child is being flown out, and the
flight crew is it's way now."
It happened so fast
when they arrived. They put an IV in my baby's tiny hand, strapped him
down inside big isolate and took off. We left immediately after, still
having no idea what, if anything, was wrong. I watched the blinking
lights of the helicopter for a good fifteen minutes and when it finally
left my sight I remember thinking "he will be there in about 20 minutes
and I still have a two and a half hour drive" It was the most agonizing
drive of my life. When they called to update they said Logan had a
really rough flight. His oxygen saturation's dropped in the 30's and he
at one point quit breathing. It wrecked me not being able to be there
for him.
Tetralogy of Fallot was the diagnosis
shortly after he landed. He will need heart surgery in the next couple
days the Cardiologist said. I couldn't fathom any of it. I cried so hard
I couldn't reiterate anything I was just told to my husband and mom who
were in the car with me. The rest of the weekend was spent in the
hospital monitoring Logan and keeping his oxygen saturation's stable.
Our
four (and a HALF) year old, Emma, was able to visit most days in the
hospital. If her playful and sweet personality can't make a person
smile, I don't know what will.
Logan underwent his first open heart surgery on Monday 10/13/14. The surgeons began at 9:28 and he was in recovery exactly two hours later at 11:28. A shunt was placed, which was a temporary repair.
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Nothing
can quite prepare you for seeing your child after a surgery like that. I
have never had such mixed emotions, happiness and relief he was out
with no serious complications, and unexplainable heartache that he was
even in this position to begin with. I hardly recognized my own baby
with all of the swelling from fluid accumulation and tubes coming from
his tiny body. With the help of the amazing Cardiac team at The
Children's Hospital, Logan made a beautiful recovery and was home just
seven days later.
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A month later and we had almost
forgotten about the DiGeorge syndrome testing. When we got the call
they had great news, the 22q testing was negative. Then, we received
some not so great news. We were told Logan is missing a piece of his
16th chromosome that no one has ever been documented missing before.
This means they have no idea how it may (or may not) affect his health
and development in the future. I took this especially hard for a couple
of weeks, how could they not know ANYTHING. The unknown truly IS
frightening. After a trip to the Geneticist I was feeling much better as
she couldn't get over how wonderful Logan is doing now. There is still
fear, but it gives our family hope.
Our little miracle is now four months old and sweet as can
be. We are enjoying every day with him as he grows at his own pace and
hits new milestones. However, there is always concern as he outgrows his
shunt that it may fail.
Logan's saturations
have been dropping quite low recently and has become a concern to his
team of cardiologists and surgeons. He will be going in for his second
open heart surgery on February 19th for the full repair of his heart
defect (that's less than a week from now!).
We are so incredibly thankful for the
outpouring love and support from our family, community, and even
strangers. We are extremely humbled and our hearts, too, are forever
changed. We will be so happy once Logan's heart is completely repaired
and healed and we can put this chapter in our lives behind us.
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CHD
awareness is so very important. Early detection is critical in order for
successful treatment. The more awareness spread the more possibilities
for new and improved treatment. Encourage newborn pulse oximeter tests
as this can be an early indicator. I also cannot stress enough the
importance of well child check-up's. I hate to think what could have
happened if I didn't bring my baby boy to his two week well child check
and if it weren't for our incredible family practitioner.
- Courtney (Logan's mom)
- Courtney (Logan's mom)
You are welcome to follow the Boysen family on Instagram: @courtneyboysen
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