“When I went for my 20-week anatomy scan, my OB stated he couldn’t see all four chambers of her heart, but she was so wiggly that we decided to just do another anatomy scan later on. During that scan, the concern was still there, so we were referred to an MFM. We couldn’t get an appointment for weeks out.

The day of my appointment, I went into preterm labor. We did everything we could to keep her in there. Despite this, Ellie was born at 32 weeks and we had no idea about her diagnosis. I was blissfully living in the “it’s nothing until it’s something” world. I didn’t even get to see her but for a second after she was born. They quickly rushed her to the NICU and then off to the NICU at Children’s Dallas, where she has had all of her care. It was there that they determined she had hypoplastic left heart syndrome.

Ellie was not only born with CHD, but also with malrotation of her intestines. When she was a few weeks old they whisked her away to surgery to put her intestines in the right spot so she could eat and be healthy for her first planned surgery, the Norwood. Just a couple of short weeks after her first surgery, she went in for pulmonary banding so she could grow some more for her Norwood. She did well after this and we watched her grow and become more like herself. She had a few setbacks while waiting for her Norwood. One of them landed her on ECMO on New Years Eve, but she was quickly able to come off and recover.

In February (heart month!) she was finally ready. We waited what felt like an eternity for her surgery to be done, even though it only took around 2.5 hours. When she was rolled back, I instantly knew something was wrong. She looked pale. She looked like she wasn’t even in her body. We had nights and days of terror and Ellie eventually ended up on ECMO for the second time. She was diagnosed with severe pulmonary hypertension. “The most severe they’ve ever seen.” We were told she shouldn’t even be alive with the pressures she had. But, God. She was expected to be on ECMO for at least 8 weeks, but after just several days, she came off. She did so amazingly well for a short time.

Then, we were back with some days of terror. Multiple cath labs, a GJ procedure, several blood transfusions, sepsis and a bowel perforation surgery later, we decided the best thing for her growth would be a tracheostomy. Me and dad battled so much with this. It would change our lives with Ellie. Nurses in our home, constant monitoring, and not having the normal baby life we were hoping we would get a little piece of. We prayed and prayed and God said “no”. After a couple of weeks, we randomly prayed and felt at peace with giving her a trach to help her lungs. That day I had went to the hospital and while me and Ellie were playing, she said “mama”. I knew right then that was why God was telling me no. It wasn’t really a no, it was a “not yet”. He knew I needed to hear those words knowing she wouldn’t be able to talk for a while having a trach.

After that, we got her sano shunt upsized to get her ready to go home. A few minor complications later, she came home for the first time at 18 months old. We’re now hoping for a transplant in the future. She’s been happy and thriving ever since. We are so grateful to God for blessing us with this beautiful baby. He has shown Himself faithful through and through. Ellie is a reminder of true strength and happiness no matter what her situation is. She never cries and is always ready to face what comes next. She is our little warrior baby. I wouldn’t trade all of the pain we went through for anything. I am blessed to be her mama and blessed to be loved by God.”