No mom wants to see the concern on an ultrasound technician’s face, no mom wants to learn that her baby will have Down Syndrome, prenatal diagnosis of heart defects and will likely have to have double surgeries…

I will probably never forget the day in May 2016 when I found out my sweet little baby had a heart defect. At our 19 week ultrasound, I knew there was a problem. The ultrasound tech was taking such a long time. She had me roll to each side, get up and take a walk, drink cold water and still, she was not happy with the images she was getting. This is my third baby. I’ve had plenty of ultrasounds before and I knew that in this particular one there was something wrong.

The anxious pit in my stomach grew as my husband and I waited in the waiting room with our 2 little girls for the tech to come back and talk to us. Five minutes felt like an eternity and when she finally came out she simply said, “Someone from our San Francisco office will call you on Monday.” It was at that moment, my world stopped. My heart sank, deep.

My midwife called me on Sunday morning. She had been off a couple of days and was on call that particular Sunday. She started off the conversation by saying that I must be a mess with everything that’s going on. I told her that I had no idea what was going on but I had noticed the ultrasound tech focusing a great deal on our baby’s heart. She read through the notes and confirmed they needed better pictures of the baby’s heart. The tech was only able to locate two out of the four chambers of the heart. I cried hard. What does this mean? What is wrong with my baby’s heart?

The following week, we went down to SF for a higher level ultrasound. It was confirmed that our baby girl did indeed have a hole in her heart. There was also speculation of Down Syndrome because of the heart defect as well as a couple of other soft markers. The perinatologist referred us to a pediatric cardiologist and by the following week, we were back down in SF, meeting with her to have a closer look at Bernadette’s heart.

That week we found out that our sweet Bernadette had a complete AV canal defect and we were told it would require surgical repair between 2-4 months of her life. The hole appeared to be quite large but once she was born they would do an echo to see just how large it really was.

That summer was hard. Lots of appointments, lots of worry of the unknown, lots of new terminologies I didn’t even know existed, lots of things out of my control. I was a mess. I cried so much that summer. I felt like everything was slipping through my fingers. I didn’t know much about Down Syndrome or heart surgeries. But I knew God was in control. He had created our baby girl perfectly in His image. I clung hard to Him. We started preparing our girls and telling them that their little sister was sick and she would need to stay in the hospital for awhile. We prayed together for her together but nothing we could have said could have prepared any of us fully for the journey ahead.

Bernadette arrived October 4. I was set to deliver in SF but I delivered her at our local hospital instead. When things kicked in and I realized I was in labor, it was too late to make the drive to SF. Immediately after birth, she was evaluated by the pediatrician and taken to the Intermediate Nursery. The on-call pediatrician kept telling us that Bernadette was probably going to be transferred to SF so she could receive a higher level of care. But she did great and we were home in 3 days.

Things changed for us when Bernadette was a week old. At her first echo, it was discovered she had another heart defect, the coarctation of the aorta. This meant she was going to require more immediate surgery and when she was 2 1/2 weeks old we were admitted to Benioff Children’s hospital at UCSF to the NICU before her first heart surgery. She had already become symptomatic and was breathing rapidly. Her skin color was blueish and mottled some of the time and she was having a hard time gaining weight. She would tire easily when feeding and she would sleep so hard she wouldn’t wake up to feed. We were not prepared to be admitted for surgery so soon. And I honestly didn’t understand exactly what was happening until the day before the surgery when we were signing the consent for surgery form. It was scary! The nurse practitioner came in our small NICU room where I was snuggling my little baby to explain the procedure. I fought the tears hard as I thought about the intubation, the anesthesia, the procedure itself. It was a lot.

The hardest part for me was immediately following the first surgery. We went in to see her after the handful of hours from being away from her. I didn’t even recognize her. I wasn’t prepared to see my tiny newborn laying there sedated with all the tubes and IVs and everything else that was attached to her. I only knew it was her from her ginger hair sticking up. I was not allowed to hold her for a couple of days which pained my mama heart even deeper. I looked at my tiny baby and all I wanted to do was scoop her up and comfort her the only way I knew how, but instead, I held her hand and talked to her and prayed for her with tears streaming down my face.

The original plan was to go home 7-10 days post-op and gain weight at home to prepare for her second surgery. But we soon realized while we were in the Cardiac ICU her little heart was sicker than anyone originally thought. She started having some scary episodes related to her pulmonary hypertension and was unable to wean off of respiratory support. From the CICU we were transferred back to the NICU where we waited for days… for weeks… until finally, it was time for her second heart surgery, only this time open heart surgery.

I felt a little more ready for this one, but of course, it’s not easy to send your 8-week-old newborn into open heart surgery. We had already been through one surgery though and I knew how badly she needed the second. She was suffering. Her skin was always blue and mottled, she breathed so fast that she was nicknamed “Dragon” even on respiratory support, and she was still struggling to put on weight. After 5 1/2 weeks post-op, it was once again time to kiss our little babe goodbye as we handed her off for OHS.

I had a better handle on what was going to happen this time around. I knew more or less what to expect because we had just been there. I had learned very quickly in our time in the NICU and CICU to ask all the questions. Multiple times. To everyone. I wanted to know, why are you doing that, what exactly are you doing, and please tell me everything you are thinking. The more knowledge I had the more equipped I felt. I knew the ins and outs of the beeping monitors keeping watch on her heart rate, the various noises coming from the machines pushing her meds, I knew what the numbers flashing on the screen meant and I knew I could still be there for my baby even if that meant I couldn’t hold her for a couple of days. I understood how critical the time period immediately following the surgery and into recovery was going to be. Over and over, I kept repeating what our cardiologist had told me: “She’s in the very best of hands. And, she’s in God’s hands.”

We survived our second heart surgery, my little tiny fragile 8-week-old, and my mama heart. As it’s been said before, kids are resilient. Her recovery time from this surgery to repair the complete AV Canal was quicker. After 2 months of being in the hospital, only 11 days after her open heart surgery, we finally left those hospital walls!

We have been told her repairs look good! Praise God for that! We go back soon for her next checkup with the pediatric cardiologist and hopefully from there we will get to the place where Bernadette’s heart is stronger and we can start seeing her cardiologist less often than every couple of months. She should not need another heart surgery. She has leakage in her valves that is to be expected after this kind of repair and will not need intervention unless she becomes symptomatic. Her biggest hurdle now is overcoming the nasogastric tube that was placed after her first surgery.

By the grace of God, we are on the other side of heart surgeries. We have seen scary, we have walked through hard. I am incredibly thankful for the community of friends and family that have surrounded us every step of the way. I am thankful for my sweet daughter. She is so tough and she has the scars to prove it! Already, at 6 months old, I see the sweetest little thing I have ever laid my eyes on. She has the most beautiful heart, a smile that will melt away even the hardest of days. She is the most perfect gift and has rocked my world in the wildest of ways with her perfect designer genes!