All around us are these tiny warriors dealing with things that we could only imagine, and doing so with such strength and determination. Behind them are their loved ones just learning how to manage all the things that may come with their diagnosis. Through all of that, we know how important photos are, but with everything going on, professional photos usually get pushed to the side. It’s just not at the forefront. I want to give parents of tiny warriors photos to treasure, a way to tell their story, and an avenue to get the word out about their favorite charity. So, once a month, I’ll pick one tiny warrior from any submissions to gift a session.
To start this program, Cole is going to be our ambassador! I met Cole the first time when he was a few months old for his family photos. Y’all, I adore this little boy and his family so much! You’d never know how much he has going on. I asked his mom to tell his story and this is what she has to say:
Tell me about Cole:
Cole has Teleology of the Fallot, pulmonary artesia, major collateral vessel, and was diagnosed with 22q.11 deletion. At our 20 week ultrasound the doctor noticed that Cole’s feet looked turned in towards each other. My doctor decided to send us to Texas Children’s for a more in depth ultrasound. At Texas Children’s they noticed the blood flow was mixed together, a hole in his heart, and bilateral club feet. It was that day that my whole world changed. They suspected that Cole had a genetic disorder, and we needed to do more testing. Jared and I agreed to do NIPT, but not Amniocentesis. We did not want to jeopardize Cole's chances of survival. We did not care about possible genetic disorders he might have. At 33 weeks I was diagnosed with pre-eclampsia and almost had to deliver at 34 weeks. My blood pressure went back down without medication, so my doctor decided to hold off. I made it to 37 weeks before my doctor said it was time to deliver. On April 20th, 2018 a sweet baby.boy was born at 1:35 PM! He weighed 5 lbs 4 oz and was 19 inches tall. We held him for a minute before he was rushed off to NICU. There we spent a week and a half before it was determined that Cole could go home to grow! We didn’t have his first open heart surgery until 10 months old. We struggle with Cole being able to gain weight. He is 13 months old now, and weighs 13 lbs 2 oz. He probably won't gain the weight they want until his full repair. Cole will have to have multiple surgeries to replace the conduit that will eventually be put in.
.We've been very blessed! Having a baby with 22q is very hard, especially since both my husband and I work 40+ hours a week. We don't have near enough vacation either. My mom helps us a lot by making sure Cole makes his doctor appointments and she keeps him during the day while we are at work! We would be lost without her! 22q can have a variety of issues health wise and developmental. No two babies are the same! In fact there are some people who don't know they have the syndrome. It is very much a wait and see game with Cole. So far health wise and developmental Cole has had very mild set backs (even with his heart condition). He's our heart warrior!
Do you have any advice for parents/families in your situation?
Don't ever give up hope! These babies are so brave and happy even in the hardest of times! Also, always turn to God! Even when we don’t feel him, he is there with us!
Is there anyone you'd like to publicly thank?
I would like to give a shout out to God, my mom, my mother in law, my best friends, my church family, to my favorite photographer, to the doctors that take special care of Cole! It truly does take a village to raise a baby!
Is there an organization that you'd like people to donate to?
Any heart charities!
Here are some of Cole’s photos from his session. He is hanging out with his stuffies from the video that explains his surgery for his heart. You can see his scar from his first open heart surgery that is healing beautifully, his sweet little feet that have more circulation after his surgery, his little braces to help correct his turned feet, and his big blue eyes, and his adorable smile!
If you know someone with a tiny warrior, age one year or younger, have them contact me through email at firstname.lastname@example.org to be considered for one of the monthly sessions. My hope is that this program allows families to tell their stories with the added bonus of beautiful photographs of their little one.