Baby Jordyn was just two-weeks old when she had her first open-heart surgery.
On Dec. 2, 2019, she underwent her second surgery when she was five-months-old, and by the time she turns three-years-old, she will have had her third open-heart surgery.
“She has amazed me in so many ways,” said mom Lindsey Terrell. “She’s the toughest little girl and the one who teaches me about life and who saves me.”
When Terrell found out she was pregnant with her second child, she was overjoyed, but little did she know the journey she was about to embark on.
After losing her father in 2017, Terrell said she was excited to honor him and name her beautiful little girl after him.
“Jordyn comes from a song he sang me when I was little, ‘Swing Low, Sweet Chariot’ that mentions looking over Jordan,” said Terrell. “His middle name also started with a ‘J,’ and the biblical reference has turned out to be quite fitting as I believe God and many prayers from a lot of people are the source of her doing so well thus far.”
During her pregnancy, Terrell said there were no signs that anything was wrong, but it was, in fact, during a sonogram when they couldn’t identify the chambers of her heart that we were referred to the Fetal Care Center of Dallas.
“The Fetal Care Center did a sonogram of her anatomy and an echocardiogram of her heart and told me what appeared to be wrong with her,” explained Terrell. “They went through what possibilities could be expected and also that I would have to give birth to her in Dallas due to her condition.”
Terrell learned that her unborn daughter had ‘heterotaxy,’ which means her organs are abnormally arranged in her body. The diagnosis is also the cause of her CHDs or congenital heart defects.
“It is also the cause of her spleen (immune system) not functioning property and her intestines being malrotated (twisted),” said Terrell. “It was also then when I learned that her CHDs included hypoplastic left heart syndrome, which is a rare and complex defect that means the left side of her heart is severely underdeveloped.”
Terrell explained that there is no cure for Jordyn’s condition, but there is a set of three surgeries that could take the stress off the left side of her heart. If the operations don’t help, a heart transplant is her next option.
Devastated at what she learned, Terrell, a nurse herself, said she felt relieved to know what was going on ahead of time and that there was a plan in place to give Jordyn the best possible fighting chance.
On June 25, 2019, at 11:42 p.m., Terrell gave birth to a beautiful baby girl, Jordyn Elyse.
Terrell said when Jordyn was born, her PDA (patent ductus arteriosus) remained open, allowing better blood flow to get to her lungs. Her oxygen saturation was lower than average, but doctors said it was reasonable for her condition.
“PDA is an extra blood vessel found in babies before birth and just after,” explained Terrell. “In most babies who have a normal heart, the PDA will shrink and close on its own. As the PDA started closing, doctors were hopeful, but when she was two weeks old, it completely closed. Her oxygen levels became critically low, and she was sedated and placed on oxygen and transferred to another hospital.”
At just two weeks old, Jordyn underwent open-heart surgery.
“This for us is when all calm was lost. Handing over your baby to a stranger knowing that they are about to spend four to six hours in an operating room, cutting her sternum in two, placing her on a heart/lung machine (breathing for her and pumping blood for her) with the risk of not being able to regain this ability to do it herself, placing a shunt to ensure that blood flow is controlled enough to prevent damage to the heart and lungs and that enough blood is reaching the lungs to keep her alive until the second surgery is terrifying.”
And while those hours felt like days for Terrell, her strong baby girl proved just how much of a fighter she is.
“She did great with surgery,” said Terrell. “She does get exhausted and has a feeding tube because she becomes too tired and burns too many calories trying to eat, but she is gaining weight well and fights hard to thrive daily.
A fight she faces every single day with a smile.
“Derek, her big brother, Jensen, and I couldn’t be more proud of her. She is the one that teaches us so much about life and how fragile it can be but mostly to enjoy it and live each day to the fullest.”
Four months after her first surgery, doctors decided to move forward with her second open heart surgery after the shunt that was placed during the first surgery began failing. During this surgery, they bypassed the left side of Jordyn’s heart to take the stress off and create a new way to get blood to her lungs.
“She is doing well since surgery,” said Terrell. “She is still on sternal precautions due to recutting open her sternum, and she is still sore at times. She also has PTSD moments and needs extra loving. Of course, we have to be cautious to keep her from getting an infection, and she will be on antibiotics for a long time. Still, regardless of everything she goes through, the regular tests for her heart and shots for her immune system, we haven’t met a happier baby and couldn’t love her any more than we do.”
After conquering her second open heart surgery, Jordyn will now wait until she is three-years-old when she will undergo her third surgery.
“There are no guarantees as to her survival, although the doctors said she is a very strong little girl with a lot of fight.”
Now, locals are stepping up and fighting for Jordyn in another way.
“February is CHD Awareness month and Mended Little Hearts is raising awareness for CHDs and also encouraging those with scars to show them off and be proud of their journey and their fight never to be embarrassed or discouraged by their scar.”
‘Rock Your Scar 2020’ is a photo contest, and YOU can help by going to bit.ly/2FNxP2v and voting for Jordyn.
“Everyone’s journey with CHD is different, but we all gain scars along the way both emotionally and physically. When survivors come through procedures or pass certain milestones, whether it be an echocardiogram, a catheterization, or open-heart surgery, we say they handled it “like a rock star”! We want every child and adult with CHD to feel good about themselves and be proud of who they are-they ARE – Rock Stars! So come on, show us how you rock your scar,” said the organization.
Voting is now open and closes on Jan. 31, 2020.
“There will always be things we have to protect her from, but we have great hopes as to her growing up to be an amazing person with an amazing story who can accomplish anything she sets her mind to.”
