last year and this in 2014.
Our Evin Kate was born at 8:06pm on Wednesday, March 20th, 2013. We had a perfect newborn baby. The newborn nurse detected a slight murmur right after birth, but said it was not a huge concern and that they would keep an eye on it. We spent Wednesday night, Thursday, and Thursday night cuddling and loving on our girl. It did seem like she spent most of her time asleep, but that's what newborn babies did, right? They like to sleep. Her skin did seem to have darker coloring, but I was somewhat dark complected when I was a baby, so again, I didn't think much of it. Everyone commented on her pretty pink lips. But it never occurred to me that she might not be getting enough oxygen. No one showed any concern that these signs could potentially mean that something was wrong.
We had NO IDEA that our baby was critically ill. We had no idea that her little body wasn't getting enough oxygen. We had no idea that she would have to have multiple life-saving surgeries. We had no idea what the next few weeks would hold for Evin.
Congenital Heart Defects occur in 1 out of every 110 births. That means a baby with a CHD is born every 15 minutes. It just so happened that OUR baby was the one that was born during that 15 minutes. I never dreamed it would happen to us, but it did.
Basic facts about CHDs:
-A Congenital Heart Defect is when part of the heart, or several parts of the heart, form abnormally during the early weeks of pregnancy.
-CHDs are the leading cause of birth-defect related death.
-More children die each year from a CHD, than die from childhood cancer.
-1/3 of children born with a CHD need a life-saving treatment before they are 1 year old.
-Today more than 1 million American adults are living with a CHD.
The most important fact I can share, and the one I wish I had known about before Evin was born, is this:
-Heart defects can be detected (if they were not detected in utero) with a simple, painless, noninvasive test called a pulse oximetry test. Many states are passing laws that require this test to be administered when the baby is 24 hours old. Even still, don't assume that it is just going to be done; ask for one within the first 24 hours of your baby's life.
I am FOREVER thankful for our nurse, Rachel, who noticed that Evin's coloring was "off" during her newborn tests that she gave early Friday morning, the day that we were scheduled to go home. This prompted her to administer a pulse ox test, which lead to the discovery of her heart defect. What if Rachel hadn't picked up on that? Just a few hours later, we would have taken our critically ill newborn home, and didn't have a clue that she was sick. I cringe at the thought of what could have been.
The few days after Evin was diagnosed were a complete blur. Mitch and I were hanging on by a thread as we watched Evin, hooked up to so many machines. Machines that were keeping her alive. She was sedated, had a breathing tube, and looked so tiny and fragile. I was pumping religiously every three hours, praying, that one day soon, Evin would get to eat.
She had her first surgery at 6 days old. Her heart was the size of a strawberry. She had some very scary blood pressure issues immediately following surgery, but we were discharged from the PICU to the NICU after several days. We stayed in the NICU until she was 24 days old. We were lucky enough to get to come home for several months before her next surgery. Some sweet babies and their families don't get that opportunity.
For the next few months, eating proved to be the biggest obstacle for Evin. The combination of breathing and sucking simultaneously made it feel like she was running a marathon every time she ate. In an effort to get her to gain weight, she was on an every 3 hours eating schedule. It was more work for her to breastfeed than to bottle feed, so I pumped exclusively. We fortified breastmilk with a little bit of formula to boost up her caloric intake. It took her an hour to take a bottle, and she was eating every three hours. So basically, she was eating constantly. I also pumped for 30 minutes, every three hours. Between the bottles and pumping, it seemed like there was about 1 hour in between each feeding/pumping session. For 5 months, our lives and schedules revolved around Evin eating. We worked so hard to get her to gain weight so she would be strong for her second surgery. She went in for her repair surgery at 5 1/2 months old, weighing in at 13 pounds.
She did great during surgery and had few complications during recovery.
We took her home from the hospital following her second surgery after just 1 week at Cook Children's. This homecoming was almost as sweet as the first.
Now, our Heart Hero, our Heart Warrior, Evin Kate is almost 3. She surprises us every day with the funny things she says and does. We can't imagine our lives without her sweet and sassy personality.
I am so thankful that God chose us to be her Mommy and Daddy. I am thankful that we get to experience so many incredible days with our baby. She visits the cardiologist once a year for a full heart check up, and is doing very well so far.
Evin's heart is "repaired" but she will have to have a valve replacement surgery in the future. Hopefully the surgery is 10-15 years out, but we will have to keep an eye on her heart to see when the surgery will be necessary. I do see signs of her mended heart from time to time. Her lips, fingers and toes will turn purple when she gets cold. She seems to get out of breath quickly when running and playing. She gets sick easily, and when she does get sick, it seems to take her forever to get well. I certainly try to be positive and thankful for Evin's health, because things could have turned out so much differently than they did.
My favorite Bible verse hangs in her room and will forever be written on my heart.
Everytime I think of you, I give thanks to my God.
Congenital Heart Disease is severely underfunded relative to the prevalence of the disease.
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Wear red this week to support little heart warriors everywhere!