This week’s brave story is from a young mom I had the privilege of getting to know through MOPs. Her story is incredible. She is being brave in the face of uncertainties and nont-normal-ness and she is rocking it. I hope you are inspired by her story!
Stories from San Antonio
When have I had to be brave? Well I’m not sure if I can call it being brave, scared, or just thrown into a situation that I had absolutely no control over. You might call it bravery, but I call it my life.
When I was in my second trimester with my daughter, I found out that she had what’s called a two-vessel umbilical cord. This means that she only had one artery and one vein, as opposed to two arteries and two veins found in a healthy umbilical cord. My OB doctor told me there was nothing to worry about, but after my mom did some research on it and found out that there’s a chance my baby could have heart or kidney problems, I asked to see a specialist.
That first appointment with the specialist did not go as well as I could have hoped. The doctor found out she had a Ventricular Septal Defect (VSD), which meant that the ventricle wall had a hole in it, which also means poor circulation. The size of this hole would determine if she was going to need surgery or not when she was born. At this appointment, I also agreed to an amniocentesis because if anything else was wrong I just wanted to know. Knowing was good because that gave me time before baby was born to prepare my mind and my heart. Thankfully my daughter did not have any chromosomal abnormalities. All was well except her poor little heart.
For the rest of my pregnancy, I had ultrasounds at every appointment, as well as an echocardiogram to make sure my little angel was okay and to monitor the progress of her heart, whether that was good or bad. We suspected that she had a second defect, but could never get a good enough view because her sweet little arms always covered her heart. We were hoping that she was just going to surprise us with no more defects when she was born, and that it was her way of keeping it a surprise!
Lydia Sharee’ Hancock was born January 29, 2013, four weeks early at 4 lbs., 10 oz. I saw her for five minutes before they whisked her away to the Neonatal Intensive Care Unit (NICU) to do another echocardiogram so that they could check her heart again. Finding out if your newborn’s circulation is healthy is not something you wait to do. It turned out Lydia had VSD as well as coarctation of the aorta. The Mayo Clinic defines this as “a narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body.” We found out soon afterwards that Lydia had a severe case. She was given an IV and later a PICC line that delivered a constant dose of prostin to keep an extra valve in her heart open that otherwise closes soon after birth. This valve is used in utero to deliver oxygen to the rest of the body while the lungs are not in use.
We decided about two weeks later that Lydia needed heart surgery sooner rather than later. Long story short, she had open heart surgery with bypass on February 19, 2013. They had to reopen her chest as soon as they got to the PICU after surgery because the edema was so severe. She went into cardiac arrest three days later, had CPR and an AED used on her for over 30 minutes with no oxygen to her brain. She was on ECMO (bypass) for three days because she went into heart, lung and kidney failure, had her chest open for 8 days, had numerous drainage tubes sticking out of her chest, and she had to have peritoneal dialysis.
Looking back, I know it was the grace of God that got me through those hard times. Right now, almost two years later I am still performing daily acts of bravery. Lydia is lovely, and she is doing the best she has ever been, but she still has so many things going on right now: brain damage, severe developmental delay, hydrocephalus with a VP shunt, epilepsy, tracheotomy, ventilator, gtube, reflux, ketogenic diet, up to 6+ meds twice a day, nurses at my house almost around the clock to help me take care of her, occupational, physical and speech therapy, case managers, monthly medical supply orders–the list is endless! I am constantly seeking out God’s help.
22 Because of the Lord’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The Lord is my portion;
therefore I will wait for him.”
17 For the Lord your God is living among you.
He is a mighty savior.
He will take delight in you with gladness.
With his love, he will calm all your fears.[a]
He will rejoice over you with joyful songs.”
6 So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor. 7 Give all your worries and cares to God, for he cares about you.
11 “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”