Ivy Heart Memorial

Ivy Evans Neuman was born on November 21, 2022 with a rare heart condition known as Truncus Arteriosus. This is her story.

We (Ashley and Austin) found out we were expecting Ivy on April 2, 2022! We were thrilled, but scared. We had 3 previous miscarriages, so knew going into this pregnancy, things don’t always work out the way we plan for it to.

Early on I had bleeding. We found at at 6 weeks we not only had Ivy, but another little baby in there with her. Nothing about the twins looked promising though. There were talks of conjoined twins, but ultimately the doctor told us she thought my body was trying to miscarry the babies. We waited and we prayed a lot for our babies to make it through.

At 9 weeks (and a couple sonograms later) the bleeding had slowed, and we saw a perfectly healthy little baby swimming around. We were beyond excited. We knew from early on that our Ivy was going to be a fighter.

The next 10 weeks were pretty boring. Our favorite word when being pregnant. We made it past that first trimester. The 20 week anatomy scam came around. Before the appointment I told Austin, I felt like something was wrong. I was so nervous going into this sonogram, but we were ready. During the sonogram, they brought in two other nurses. I knew right away something wasn’t right. They told us they just couldn’t get all the pictures and sent us back to the waiting room. Sitting there I knew something was off. Austin stayed hopeful and said don’t worry he was sure everything was fine. When we met with our doctor after what seemed like 17 hours (it was maybe 5 minutes), she told us our little girl had something wrong with her heart. She needed to send us over to a cardiologist ASAP as she has never seen a heart that looked like our Ivy’s before.

Since our appointment was on a Friday, we waited until first thing Monday morning for that first ECG. We researched CHD and prepared ourselves for something like a VSD (hole in the heart) or a simple fix that would most likely require heart surgery.

Monday we received her official diagnosis. The ECG was around 2 hours. I remember my heart sinking down into the ground as the Cardiologist walked in with a binder that read “Heart Surgery” on the front. Ivy would be born with a rare heart condition known as Truncus Arteriosus. She also had a hole in her heart, and mild thickness around her truncal valve. We were told she would need multiple heart surgeries throughout her life. The first one starting within the first couple of days of being born, but would be able to live a healthy, normal life. You would never be able to know she had this condition. We had additional genetic testing done, and were referred to Cardiology at St. Louis Childrens, as well as MFM at Barnes-Jewish. I also had a condition known as UGR (uterine Growth Restriction), which meant she would not grow as big as most babies. (Her sister was only 5lbs 7oz).

As the pregnancy progressed, we added some additional complications which included gestational diabetes, and prehypertension. She was growing, but very slowly. Ultimately we prepared ourselves for her early arrival. While they wanted to take her at 36 weeks for not growing, we ultimately settled on being admitted to the hospital until we could reach 37 weeks of pregnancy and bring her into the world full term.

We planned for EVERYTHING. Even the doctors, nurses, everyone, complimented us on how well prepared we were. We rented an airbnb close to the hospital for 8 weeks. We planned to move our entire lives down to St. Louis until we were able to bring our girl home with us. The plan was heart surgery within the first week of life, recover, and be home in 6 weeks until her next surgery! We expected that a few years out. Austin, Everly, and the dogs, Taz and Babz, would stay at the air bnb, while I would stay at the Hospital with my Ivy girl. We were ready for everything.

On November 21st, our sweet angel made her arrival weighing 4lbs 6oz and 17.5 inches tall. She didn’t cry immediately, but after a couple of minutes we were able to hear her sweet cry. I wish I would’ve recorded every single cry. I had no idea that within the next 15 days, she would be gone.

Since I had a C-Section, Austin went with Ivy as they finished closing me up. I still think about how brave he was that day. My C-Section was not going well as they had to take Ivy away. He was scared, his wife was puking, and he had a sick baby he needed to be with. He kissed me and headed out the door. The doctors said I could see her after about 8 hours when I was able to get up and walk. I made it by her side in under 4. Since she was so small, she started out in the NICU with the hopes to get her to grow a little bit before sending her away for open heart surgery.

She was the most beautiful baby. You would have no idea she was so sick. We had no idea she was so sick. She immediately had an ECG to confirm her diagnosis. We were prepared for everything, but we were not prepared to hear how much worst her heart was then we had initially expected. On top of the original diagnosis, her truncal valve was almost closed. She would possibly need a full repair. The first 24 hours were a whirlwind. She was moved from the NICU to the CICU within 24 hours.

She was immediately intubated in the CICU to try and give her body a rest since her heart was trying to work so hard. Her lactic acid was on the rise (over 13), she had blood drawn every two hours, CT, X-rays, ECG’s. We needed to find out as much information about what her body was doing and quick.

The cardiologists, surgeons, doctors, nurses all had a meeting about Ivy on day two and how we could help her. This meeting was four hours long. According to her surgeon, they had never seen a heart like hers before. We already knew how special she was, but we didn’t know just how special. She was too sick and small for them to immediately open her up. She would not survive open heart surgery. To buy us time, they came up with a game plan. We would put restrictors on her arteries to help flow blood better throughout her body. Right now all the blood was going to her lungs, and we needed it to flow to the rest of her body as well. This had never been done on a baby so small in the US. The cath surgery was risky. After speaking to the Dr. who would be doing the surgery, he was confident this would buy us time, and we were confident with him. Within 24 hours, our baby girl was whisked away and taken to her first surgery.

The Cath surgery was a success. Her Lactic Acid started coming down again and she was stabilizing. Day 3 all of our hopes came back. When knew this was going to be a rollercoaster ride. Just when everything was looking great, she crashed 2 times that night and had to be bagged. We held on as they brought her back. I remember looking over at Neuman (who was sleeping on the floor at this time) and we both had fear in our eyes. Were we really about to lose our baby girl? No, not yet. Ivy persisted on and made it through the night.

The next couple of days were spent just trying to figure out what kind of support she needed. On Day 5 daddy was FINALLY able to hold his little girl. It was such a magical moment. Everly was there with us and she was even able to love her up a little bit. We stayed positive that things would start to turn around for our girl.

Looking back, we were so convinced that Ivy girl was going to pull through, we never even let the worst case cross our minds. We had to be strong, not only for Ivy, but our two year old was living this with us as well. We needed to make the best of our worst situation and that’s what we were doing. That night the Dr. came into the room. We called him Dr. Ezra, but that was not his name. We had nicknames for all of the Doctors. He told me “you are so positive about everything, I’ve never seen anyone so happy” I told him we were prepared for everything and ready to do anything for our girl.

The next few days the roller coaster continued. Just as we thought we was doing better, something bad would happen. Removing her morphine caused her calcium to go crazy, lactic acid would rise and then come down, her breathing tube would need to be adjusted. Our goal was just to start getting her milk so we could get her to grow. Finally on day 8, my girl was able to start drinking some of mommy’s milk. It was such a great moment. Even if it was a small amount, we were excited she was moving in the right direction.

The milk started and stopped more times than I can remember. She would start to tolerate things well, then she would end up super sick. At one point she had turned completely pale and I thought this is the end. She kept pulling through and giving us more time with her. By day 11 she had more, ECG, X-rays, blood transfusions, pokes, shots, Ivs, medicines, EKGs then I can really even keep count of. I remember one night just looking at the Dr’s as asking them to please just stop and give her a minute. She was crying (a silent cry since she was intubated), they were trying to get a new line into one of her tiny veins, and I just felt awful. They gave us some time that night.

Watching her suffer or cry silently was the worst. The nurses always told me I had the magic touch. Since we were unable to let her get to upset without hurting her heart, they had to use morphine often to calm her down. Most of the time, I was able to calm her down just by rubbing her head or her little feet. She loved when I would get super close to her face and just shushh shushhh shushh shushh. The days we held her, she fully relaxed.

On day 12, we finally heard the words we had been dreading to hear. Ivy girl would be heading to surgery in 2 days. The weekend was suppose to be a quiet one, but Ivy kept us on our toes. A whole lot more ECG, EKG, X-rays and everything to try to give the surgeon as many pictures as possible before he went into surgery. Our biggest obstacle was her truncal valve. The Surgeon feared it would need fully replaced, but was confident he would do it if needed. We had plan A, B, and C. We were again prepared and ready, but we were not ready for plan D.

The day before surgery, Ivy crashed hard. We almost lost her around 11AM on December 4th. 15 doctors coming into the room. I was just rubbing her little head while they tried to figure out what was happening. She was fully sedated, yet her heart kept racing. We brought her back and she seemed stable again. The rest of the day was boring. Surgery would be 7AM on December 5th. We did everything we needed to get her ready. Daddy and I held her until around 11PM that night. She slept peacefully in both of our arms. We finally went to sleep, only to wake up about an hour later. While fully sedated her resting heart rate was over 210 beats per minute. She was crashing on and off. I once again just held onto her little head and told her everything would be okay.

I will never forget this moment. She had not opened her eyes much at all the last couple of days. Around 3AM she opened them up super wide. She looked at me and I knew. I think a mother always knows, even that small, what your child is thinking. I knew she was done fighting. I knew surgery was not going to happen. I sobbed as I told her it was okay and how much I loved her. Dad was right there with us. As she calmed back down, and went back to a normal heart rate, I asked the Dr. if she was still going to be able to go to surgery? This was around 3AM, surgery was 7AM. She told me she was talking to the surgeon and she would let us know.

I woke up a few hours later and immediately loved up Ivy. I told Austin how she had looked at me. That I knew she was done fighting and how I thought surgery would be cancelled. Shortly later the cardiologist came in. He told me if we went through with surgery, she would not live a normal life. She would know more pain in life, and ultimately never leave the hospital. It was time to call whoever we needed to tell our girl goodbye. We went over what goodbye would look like. We could keep her hooked up to her monitors for as long as we would like, and when it was time, they would take everything off besides morphine to make her comfortable, and she would pass naturally.

We made the dreaded calls to all of her grandparents and our siblings, sent out texts to our friends to let them know surgery was off, and spent the day loving up Ivy. I never wanted to let her go. As family arrived, they said hello, but ultimately had to say goodbye the same day. We had pictures taken, foot prints, handprints, everything they offered, I said yes too. I never wanted to forget any part of my sweet girl. Around 3pm we sent the family away. They brought a bed in our room. Austin and I snuggled Ivy, until ultimately removing her tubes around 4 pm. It was the first time we were able to see her cord free since birth. She was beautiful. We snuggled her for 11 full hours until she died peacefully in our arms. I had never held her on my belly, something her sister loved as an infant, it was a moment ill never forget.

Ivy changed every single part of our lives. The pain we felt those next few weeks cannot be described. Only if you have lived through that kind of hell do you truely understand what its like to lose a child. But I knew immediately I didn’t want Ivy to be remembered as just a death, or a sad part of our lives. I wanted her life to mean something. To be more then just those 15 days.

So began the Ivy Heart Memorial. Ivy forever changed our lives, and because of her, we hope to change the lives of many people in her honor. Ivy will be remembered as the fighter she was and help others who are also fighting a similar fight.