We went in for our gender and anatomy ultrasound at about 20 weeks and found out we were having a baby girl! The ultrasound tech went on to say how stubborn our baby girl was. Eva would not move into a position that allowed the tech to get a good look at her heart, we thought nothing of it! The tech recommended we return in a couple weeks to out OB and try again.
Our next ultrasound came and we were in the same boat. Eva was still being stubborn, and would not allow the tech to take pictures of her heart! Once again the tech recommended a return visit when the baby gets a little bigger, still we thought nothing of it. It wasn’t until about the fourth ultrasound they made a referral to Iowa City for an HD ultrasound. At that point, we kind of thought they may be concerned!
Finally at around 28 weeks, we had our first of many ultrasounds. It was a day our lives were turned upside down! I will never forget the feeling, the horror, and the devastation I felt hearing the word CONGENITAL HEART DEFECT!! Eva was diagnosed with Double Inlet left Ventricle at that appointment. We were told that was pretty much a guess and they couldn’t be certain until she was born what her actual diagnosis was. We had many more appointments that day and all I could do was cry! We were in shock for a while after that. Our baby girl we had worked so hard to conceive may now be taken from us before we even got to meet her!
Eva was born on October 11, 2018 and from the outside she looked perfect! Shortly after birth, she was diagnosed with Double Inlet Left Ventricle, Double Outlet Right Ventricle, ASD, VSD, Malposed Great Vessel, and Pulmonary Stenosis. We got to enjoy about a month of normal before our nightmare rollercoaster began.
On November 13, 2018, Eva went in to have her first open heart surgery. The surgery itself went great, but when they went to take her off bypass her heart didn’t start back up! Eva ended up on ECMO with a VAD.
Over the next two weeks, she underwent three more open heart surgeries, one of them being experimental to get her off ECMO. To everyone’s surprise, Eva made a pretty decent recovery and we began to work on our checklist to go home.
Unfortunately, we never made it that far. During an ECHO, the doctors discovered she had an aneurysm on her one ventricle she had. At that point, it was decided she would need a heart transplant due to not being able to operate on the aneurysm. We were put on the transplant list on February 5, 2019.
In the following weeks, Eva’s health declined to the point she had to go back on ECMO. She had a VAD placed to bridge her to the transplant. This time she underwent many more operations which included gallbladder sludge and liver failure, all of which she overcame. We waited almost seven months exactly (all inpatient) for her to get her new heart.
On August 31, 2019, we received the news they had a heart for our baby girl!! We were so excited, nervous, and scared all at the same time! Eva received her new heart on September 1, 2019. She did amazing, after a CODE event due to receiving a heart that was too large.
A few days later, Eva began to move towards the road to recovery. The heart Eva received was too large for her, so the doctors were not able to close her chest. This caused her chest to remain open for 80 days, at which point she had to have plastic surgery. They took the skin and muscle from her abdomen and placed it over her heart.
About three weeks after transplant, her kidneys began to fail which landed her on dialysis. Unfortunately, dialysis did not work as well as they hoped! Shortly after Eva received her plastic surgery, she contracted two major bacterias that she just couldn’t fight due to her suppressed immune system. This was the point where my husband and I were forced to make some unbearable decisions.
The doctors pulled us in and informed us that they had reached the point we feared for 14 months now! There was nothing more that could be done to help Eva. At that point, we were doing things to her and not for her. My husband and I took the next six days to just be with Eva. We did all the things we waited to do for 14 months. We took her outside for the second time in her life, to a Christmas concert, Santa came to see her, and my favorite we slept together all three of us! December 14, 2019, was the worst day of our lives! Eva passed away peacefully in mine and my husband’s arms watching her favorite movie Moana!
We are still trying to get back to life and find a new norm. As hard as it is not having Eva physically present, we find peace in knowing she will never experience another shred of pain! Although we are sad we did not get longer with her, we are happy to have had 14 beautiful months with our beautiful baby girl. Eva touched and inspired so many in her short life and we are proud of her willpower and strength she showed us all! She will forever be our Diva Eva!