Monday, May 4, 2015

Stepping into Spring

As spring sprung, the dogwoods reared their heads and Georgians were showered with yellow-greenish pollen for the past several weeks.  At the same time, Brayleigh turned six months old, and the meaning of her journey took on a whole new dimension.  In essence, we had previously planted our own seeds, and last month was definitely the time to see our story manifest and grow.

The month began with a wonderful news segment produced by the medical team at Fox 5 Atlanta on Brayleigh's life with Trisomy 18.  Medical correspondent, Beth Galvin, featured the challenges that babies have with the disorder and the ways in which Brayleigh is thriving through it all. The story was so fittingly labeled, "Loving Brayleigh," because in the midst of the ups and downs, the medical challenges that force her into the hospital or the joys of watching her laugh at her big sister, through it all we are just loving our precious girl.  The news story can be found here: 
"Loving Brayleigh" on My Fox 5 Atlanta

Since the Fox story aired, I have been overwhelmed with people reaching out to me for inspiration, strength and even just to keep me encouraged to hang in there and continue loving our baby girl. All of these moms have children with a Trisomy disorder, many of whom are thriving as older children. Some of the moms only had the opportunity to hold their little ones for a few days or even hours. I have exchanged emails and spoken to a few of them, and it is so wonderful to know that a community has been created for Trisomy parents to share their experiences with one another. The story was so big that it even made it to the Trisomy 18 Foundation's Facebook page, which has over 45,000 followers.  Just days later, the Georgia Department of Public Health posted a story on Brayleigh's journey as part of the March of Dimes' March for Babies Walk.  The story can be found here:  Dept of Public Health March for Babies Article

Brayleigh also had the opportunity to enjoy an Easter brunch outing with the family at the posh Commerce Club in downtown Atlanta's 191 Peachtree building.  It was her first time out of the house socially, and not for a doctor's appointment.  It was a huge milestone for our family, and we had the chance to "show her off" to familiar faces and those we met. 
We also built a successful fundraising team for the March for Babies walk in support of Team Brayleigh.  Wearing custom tee shirts that displayed "Her Story and Her Footprints," we had a small army of supporters who proudly walked 3 miles through the streets of downtown Atlanta during the threat of thunderstorms and tornadoes in support of our baby girl. God was certainly moving last month. The conversation has begun. Trisomy disorders do not have to be a family secret. These are real babies with a real message of God's love regardless of how long we get to hold them in our arms. I never knew what Brayleigh's journey would ultimately mean as the future was so uncertain, but what I do know is that God has His hands all in it!

The month, though, was not all roses.  Brayleigh had to have emergency surgery on April 13th for Meckel's diverticulitis and intussesception, or basically a blockage in her small instestines that was preventing her bowels from passing through. After noticing what appeared to be fairly extreme gastrointestinal issues, she ended up at the children's hospital for what would turn into a  five-day stay. Apparently, a small percentage of the general population is diagnosed with this condition, and often times it is discovered by the age of two. Brayleigh recovered well from surgery.  She was extubated shortly after the procedure and despite a little fussiness from time to time, her overall spirits were pretty upbeat. For the first time ever, she was moved from the critical care unit and onto the regular "floor" where children of all ages had everything from a broken leg to surgery to repair their vocal chords. 
Brayleigh somehow managed to prove that she was more stable and did not require the "around-the-clock" care, although I quite honestly missed the attention from the pediatric intensive care unit.

We were elated, nonetheless, to bring our baby girl home. We no longer had to worry about hospital shifts, dining options and shuffling big sister from place to place while we made sure Brayleigh was ok.

God is obviously working miracles through this little girl, and Chris and I as parents are here to be her voice.  We clearly moved waves this past month in trying to bring awareness to Trisomy 18. In our own way, we are watching our seeds bloom and are fortunate that our gift can be a blessing to others.

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