“Your daughter has a rare congenital heart defect known as Ebstein’s Anomaly.” These were the words that turned my world upside down. I never thought my child would be born with something like this because these things happen to other people. Right?
No. This is where God humbles us and reminds us that He is in control.
Over the last several months, I’ve learned A LOT about my daughter’s heart condition. I’ve been through counseling, chiropractic, and even trauma releasing bodywork… and I’m still learning what our new normal looks like.
This process is hard.. it’s scary… and sometimes I wonder if I’ll ever feel okay again. What inspires me is the stories of other mommas who have already walked this path. It gives me hope, that I can get through it too.
My intention for this post is to make you feel less alone. Maybe hearing my daughter’s story will bring your heart the comfort, peace, and strength it needs to keep going.
Finding Out My Daughter has CHD
After an uneventful pregnancy, we were so excited to bring our second baby girl into this world. In the weeks leading up to birth, we grew more and more ready to meet this little person who had become a familiar stranger, in my womb.
I ended up going into spontaneous labor at 39 weeks pregnant and to our surprise, she was born just 5 hours later!
She came out with the cord wrapped around her neck, so she looked a bit blue. Truthfully, I wasn’t worried at this point because my first daughter was also born blue because she had TTN.
After a few seconds our baby girl, Josie, began to cry…. It was like music to my ears. She laid her head on my chest and I just wept. I was finally holding her.
As I looked down to study her precious face, her color didn’t seem to be improving. But, when I mentioned something to the midwife she assured me that she would ‘pinken up.’ I guess this was the first moment that I knew something wasn’t right, but I held on to the belief that I was worrying for nothing.
Looking back, Josie didn’t have much energy once she was born. As I mentioned earlier, she laid her head on my chest, but more in like a tired.. worn out kind of way. She couldn’t seem to keep her eyes open, which felt odd to me – but I didn’t get to see my first daughter after she was born, so I assumed this was all normal.
The First 48 Hours After Birth
We packed her up in the car and headed home. My husband and I kept looking at each other as if we were dreaming because it felt incredibly beautiful that we were bringing our daughter home just 2 hours after birth.
The midwife called that evening and asked us a long list of questions to ensure we were doing okay. I brought to her attention that she still looked a bit blueish, but she reassured me that it was normal. She explained that some babies’ hands and feet look this way for up to 24 hours after birth.
The next day, the midwife was supposed to do a routine home visit but ended up getting called in for a birth. That next morning she came out to check in on us.
The first thing she needed to do was a blood oxygen test. She said this screens all babies for heart defects.
74. Josie’s blood oxygen was 74.
My heart sank. Panic overtook my body and I just knew something was wrong.
She advised us to take her to urgent care to ensure that her machine wasn’t off. So we packed bags knowing this meant we would probably be going to the NICU.
We Arrive at Urgent Care
My husband goes in and asks if they would be willing to check our daughter’s blood oxygen levels. He explains the situation and they told him to go to the hospital and call 911.
He gets back in the car and tells me to put her in the car seat so we can go to the emergency room.
Just as we began to pull out, the nurse came running out and told us not to go anywhere. They called an ambulance and we needed to stay put. I quickly unbuckled Josie from her car seat and before I knew it, they whisked her off into a room and tried to give her oxygen.
Although it wasn’t intentional, that fact that she took my baby….. and then I never got to hold her again for 10 days.. still haunts me to this day.
The ambulance arrived and we made our way to the NICU.
The Emergency Room
Once we arrived at the local hospital, they rushed her into a room that had obviously been prepared for her. There was a team of doctors and nurses waiting for us.
They immediately started interrogating me with a thousand questions, but nothing hurt more than them stating I had inadequate prenatal care. That phrase has stuck with me ever since.
In between questions, I would lose focus as I stared at the commotion of all the nurses and doctors tending to my daughter. There were things I watched, that no mother should ever have to go through. Listening to her cry and not being able to do a thing, broke me. All I wanted to do was hug her precious body and reassure her that everything was going to be okay.
They quickly moved us to the NICU, where they got her hooked up to more machines and wires. One of the nurses allowed my husband and I to sit in the room next door, so I could pump while they did an ECHO, EKG, X-ray, and about a thousand other tests.
We waited… we cried… and waited some more.
Finally, the doctor came in and said…
“Your daughter has a rare congenital heart defect known as Ebstein’s Anomaly.”
About a million thoughts crossed my mind. I was scared and had no idea what this meant. The doctors answered our questions to the best of their abilities, but truthfully everyone had a different answer… that’s how we knew this wasn’t something they saw every day.
At the end of our conversation with the head doctor, she explained that we would need to go to a hospital that specialized in pediatric cardiology. She told us that the closest hospital didn’t have rooms available, but they were waiting on a callback. If we couldn’t get in, they would need to send her to Seattle.
We were so grateful that the PICU at the closer hospital had a room available.
A Helicopter Ride
If I’m being honest, I still have no idea why they needed to airlift her and why they couldn’t drive her… but they didn’t give us an option.
My sister-in-law drove with me to the hospital, while my husband rode with our daughter in the helicopter.
We Arrive at the PICU
After what felt like an eternity, they got her all situated in her bed… with all her wires in place. They finally called us back to see her and talk with the doctor.
Seeing her little body laying there, I felt absolutely helpless. Everything in me wanted to rip out the wires and take her home with me.
The doctor began to explain her condition and what he gathered from her scans. The prognosis was good, she had a mild form of Ebstein’s Anomaly but we would need to talk to the cardiologist in the morning.
We went home to get some rest, so we could talk to the cardiologist in the morning with a clear head.
Day 1 in the PICU
We arrived early that next morning and met with about a thousand different people. Truthfully, it was overwhelming. There was nothing we could really do for Josie except getting all our ducks in a row and for me to pump around the clock.
When we met with the cardiologist, he explained her condition in great detail. To sum it up… Ebstein’s Anomaly is when the right side of the heart is enlarged which causes the valve to be malformed. So the valve’s flaps cause the blood to leak and go in the wrong direction. This makes the heart work less efficiently.
If you are reading this because your child was diagnosed with Ebstein’s Anomaly, let me give you advice. Don’t google it. That’s probably how you found this post… but don’t google anymore. It’s not worth it.
After a long day, we decided to go home and have dinner with our oldest daughter.
Day 2 in the PICU
I got up early and headed to the hospital because we got the okay to do some skin-to-skin. I was so excited to hold my sweet baby girl again.
The room she was in was small and truthfully there was only room for me to sit and pump. So, my husband came in the afternoon to bring me lunch and then to talk to the doctor.
Just before the doctor came in, my husband got a phone call from his sister. He looked panicked as he listened.
“My sister has COVID. We have to tell the nurses.”
I ran. I literally ran out of the room and down to the car. I couldn’t get out fast enough. My husband followed shortly behind, after telling the nurses about our situation.
We couldn’t see our baby for 14 days.
9 Days of Isolation
For the next 9 days, I stayed at home (by myself) while my husband went to be with our oldest daughter at my mother-in-law’s house. Since my sister-in-law had been watching Emmie (my oldest), we were worried she would get sick too.
Being alone.. in your own thoughts for 9 days is like living in a nightmare. I actually felt like I was dreaming most of the time. Every time I called my husband, I begged him to wake me up.
I passed the time by re-watching Gilmore girls, eating ice cream, and pumping.
About 5 times a day, I would talk to either the doctors or nurses to get an update on our sweet girl. I’m grateful that we never received a bad phone call. Each time we became more hopeful that she would be coming home soon.
9 Days after isolation, the doctor called and said Josie would be coming home the next day on oxygen. Truthfully, we weren’t ready or prepared because they told us we couldn’t come to the hospital for 14 days…. So how would we be able to pick her up?
On another note, I knew nothing about bringing a child home on oxygen… so I was scared.
The center for disease called and said that if we went to get a rapid PCR test done and it was negative, we could bring her home.
Thankfully we were still negative and were able to go to the hospital.
That next morning I went to the hospital to FINALLY hold my baby girl. When I walked in she wasn’t wearing oxygen. To our surprise, the doctors tested taking her off the night before and she was doing really well.
After a full day of being oxygen-free, she was cleared to go home!
Bringing Josie home was exciting and terrifying all at the same time. She did have to wear a pulse oxygen meter, which made the whole situation a bit more complex. But all-in-all, I was just so happy to hold my baby girl again…. And start to live a normal life again.
What’s the Plan?
The last cardiology appointment was 2 weeks after we brought her home. Her EKG came back good and her blood oxygen levels rose to 95….. which is very promising.
Her cardiologist thinks that we will be able to push off surgery for a while longer. Obviously, this will really depend on how her heart grows, which we will find out more about as time goes on.
With that being said, now it’s just a waiting game. The doctors are monitoring her for arrhythmias, which would mean she needs medication.
All we can do is pray and love her.
I decided to share our story because I thought that it might help someone who is going through a similar situation. Our hope is that Josie’s diagnosis would be a light for the Lord. Each step of the way is testing our faith and I pray that this would only continue to spread His goodness
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