i figured it was time for an official update on my daughter, Sparrow. (if you’re prone to cry – get some tissues.)
from the beginning:
Sparrow was born August 16th, 2010 via c-section. she had been diagnosed in the womb with several heart defects a few months prior and we were in the right hospital, with the right doctors, surgeons and cardiologists for her to receive the very best care possible. after 4 days of tests and living in a little box in the NICU, Sparrow was given the following diagnoses:
- double-inlet left ventricle
- transposition of the great vessels
- interrupted aortic arch
at 4 days old she had her first major heart surgery. the machines seen below sustained her life post-op for 2+ weeks.
unlike most mother’s of newborns, i rarely was able to hold my new baby. for almost 3 weeks i drove home in tears leaving my newborn at the hospital. moments like the one below were sacred.
she stayed in the hospital for almost 3 weeks, then we finally were able to bring her home. Sparrow was one month old.
however she still had an NG (nasal gastric) tube down her nose for feedings because during surgery her vocal chords were damaged and she was left unable to swallow – or make any sounds. i couldn’t nurse my baby or feed her with a bottle. we fed Sparrow through a syringe, through the tube that went down her nose – for 4 months. she also didn’t cry. her vocal chords were paralyzed and thus making it impossible to hear her cry. if things weren’t hard enough, Sparrow also came home on oxygen. the repairs done to her heart only helped her to live longer, they didn’t “fix” her heart. so the oxygen was necessary for her life. i brought home my silent, sweet, baby girl with an oxygen tank and a feeding tube. the four months that followed were a blur, but i’m thankful i photograph nearly everything, because i have the photos to remind me. to say that life was hard is a massive under statement. it was the hardest thing i have ever gone through – hand’s down. we also were caring for an almost 2 year old – my sweet Noah Fox – who was emotional and uncertain of all that was going on. i did the best i could with what i was given.
that December (2010), Sparrow had her second major heart surgery. ”the Glenn”
it went as planned, with only a few set backs post-op, but she recovered quickly. all i wanted for Christmas was to have my baby girl home with me – and hopefully off oxygen. both my wishes were granted. she also slowly learned how to drink out of a bottle after we found out her vocal chords were working again. Christmas miracles: a voice, drinking out of a bottle, and no more oxygen tubes!
after the second surgery, we were told that from here on out she would grow and be a relatively “normal” toddler. she sees her cardiologist every 6 months, receives echo cardiograms (fancy ultrasounds of her heart), and has normal check-ups with her pediatrician.
until she turns 3.
once Sparrow turns 3 (or weighs around 30+ pounds) she will have outgrown the repairs done in Dec. 2010 to her heart and will need one final surgery – for the rest of her life. we are now approaching that date – August 2013 – and i am looking at this coming summer, to cram it with as much fun and adventure as i can provide for an almost 3 year old.
for Spring Break i’m trying to put together a trip to Disney for her. she just LOVES Mickey, Nemo and the Princesses. currently we’ll be crashing on friend’s couches and people’s floors throughout Florida to make it happen, but i’m such an optimist, i’m just thankful to have somewhere to stay in Florida. then, this summer I’m trying to plan a big week-long (or longer) beach trip somewhere on the Carolina coast, where we can invite all her closest friends and family to make some summer memories with her before surgery #3 in August. i just want to make my daughter’s dreams come true. what parent doesn’t want that for their child? i know in my guts she’s going to be ok through this next surgery, but i can’t help feeling like we should still go big this summer and try and have the most fun possible – for Sparrow.
for those who have followed her story/her life from the beginning, and have been a friend to me – thank you. for those of you who pray, keep praying – i do every night. i thought i’d update you all on who she is and what she’s into – so you can feel even the tiniest fleck of love i feel for her. her health is great! if you never saw the scar on her chest, you’d never know there was anything wrong with her. to me, she is an epic example of grace and love. she has and will always be the biggest miracle i have ever witnessed first-hand. Sparrow is full of sass and spunk and beauty and silliness, she is my fearless bird. her favorite things are kitties (specifically Hello Kitty), lambs, singing songs, Nemo, swimming, dancing, going to the beach, Mickey Mouse and the Disney Princesses.
ladies and gentlemen, i give you……Sparrow Song Mathis
first birthday
she loves her Daddy
Sparrow’s best friend Isabel who is my best friend’s little girl
second birthday
below is Sparrow’s pediatric cardiology appointment last August
she loves her cardiologist Dr. Bensky – who she calls “Dr. Bandaid”
getting her echo cardiogram – such a good patient
the scar she will have forever. my beauty.
her most recent appointment with Dr. Bensky – February 2013
xo/jm
ps. any help i can get to get this girl to Disney for spring break and give her a beach vacation this July before surgery would be awesome! thanks for loving her. thanks for loving me.
