Ruby Schupbach

Ruby Jane Schupach _ SmalAt 24 weeks pregnant, we learned that our 4th child had a congenital heart defect – we were diagnosed with Pulmonary Atresia with VSD. We decided to transfer our care to C.S. Mott’s Children’s Hospital after the initial diagnosis, as we are located in Lansing.

Four days before we were scheduled to be induced at Mott’s, my water broke in the middle of the night, so we rushed to Sparrow and awaited meeting our newest addition. Ruby Jane was born on October 23, 2015 and weighed 6lb 3oz. When the doctor said “It’s a girl” we started crying- I had wanted another girl to name after my beloved Grandma and we had 1 girl and 2 boys already. Ruby spent the first 3 days of her life at Sparrow in the NICU because they did not know how to take care of her, and because she was born on a Friday, we had to wait until Monday to be transferred to Mott’s. We did not get to hold her until later in the evening on her birthday, and that was extremely difficult. Her brothers and sister only got to meet her through Facetime until we got to Mott’s. 

Ruby spent the first week of her life at Mott’s for observation and then we were able to go home and let her just be a baby. At one month old, she had her first open heart surgery by Dr. Romano to place a shunt in her pulmonary arteries to help them grow. We only had to stay in the hospital for one week before being discharged. At 5 months old, she had a brief scare and we were rushed to Mott’s for observation and a heart cath. It was then determined that she needed a larger shunt, so we were scheduled for our next open heart surgery 3 weeks later. Ruby has had 2 heart caths and she is scheduled for another heart cath at the end of January. For the moment, we are at a standstill and just waiting for her to grow so she is ready for her full repair. 

Ruby is a little behind in her milestones, but overall she is doing great. She just started walking and she loves ice cream! Overall, we are so amazed at how strong she is, just like all heart babies. There are not enough words of thanks to Dr. Romano, Dr. Goble, or any of the other doctors and nurses at Mott for saving our baby girls life.

Ava Petz

Ava PetzThis is Ava. After an exhausting pregnancy, we were excited to welcome her on February 17, 2013. The joy was short-lived, as the nurse heard a heart murmur during her exam. My husband and I each held her for a few minutes and then the nurse took her to the nursery to be checked further. She never came back. After what seemed like hours I had my husband, Marc, go there to see what was going on. He came back and said that they were still working on her. I immediately had a terrible feeling that something was very wrong. On my way to recovery from the delivery room, my nurse took me to the NICU to see Ava. She was hooked up to many lines and cords and had an oxygen hood over her head. Her oxygen level was only in the upper 70’s despite being on the oxygen. My visit there was a blur but I do remember a very angry Ava kicking her feet as the nurse was trying to poke her foot for a blood draw. It was overwhelming and scary.  Around 3 am, Dr. Grifka came into my room and told us that Ava had Pulmonary Atresia with Intact Ventricular Septum as well as an Atrial Septal Defect.  Her right ventricle was small and her Tricuspid valve was small and malformed.  It was absolutely devastating.  We had no idea that anything was wrong during the pregnancy.

 

She was airlifted to University of Michigan Mott Children’s hospital right away the next morning and had her first open heart surgery at 3 days old. After almost 4 weeks at Mott’s we were home! She had a bumpy road after coming home. She developed an infection in her incision, formula and reflux issues, as well as tubes in her ears at 3 months. But she has shown her strength and feistiness from the very beginning.  She had her second open heart surgery at 13 months and is now thriving. She will be turning 4 soon and you would never know she has a CHD.  She is full of LIFE, energy and spunk.  She definitely keeps me on my toes and does not let her CHD define her!

Owen

Owen was born on July 16, 2012, a healthy baby boy. He passed all his newborn tests and we were both sent home with the elation of new parents.

After a few weeks, I noticed that nursing was getting quite difficult, as Owen would nurse for only a few minutes, then fall asleep. As soon as I would burp him, he’d wake up and cry because he was hungry. I was literally nursing him every 45-90 minutes.

I had a gut feeling that something just wasn’t right. I took him to see our pediatrician and she discovered he was not gaining any weight, approaching failure to thrive. She suggested I give him a bottle of pumped milk after nursing and come back in a week, which I did, and he had gained over a pound! At that point, we just assumed I wasn’t making enough milk for him.

Our pediatrician then did a once over on him, since we were so close to his 6 week well child check up. It was then she heard a slight heart murmur. It was so slight she wasn’t even sure she heard it, but she insisted that we go see a pediatric cardiologist.

Miraculously, we were contacted by the cardiologists office the very next day, asking if we could come in due to a cancellation. We decided to go in, thinking this would be a quick visit. Well, we sure were wrong! After an EKG and an ECHO, it was determined that Owen had aortic stenosis and coarctation of the aorta. It was so severe, they couldn’t detect a pulse on the bottom of his feet!

We were immediately referred to Motts Children’s hospital in Ann Arbor, MI and surgery was scheduled for 5 days later. We were in shock as we headed to Ann Arbor, but somehow we both survived the 5 hour open heart surgery. He had the Ross procedure done to correct the stenosis. We were told that his current conduit pulmonary valve will need to be replaced again around his 5th birthday.

We are so very grateful to Dr. Ohye and his team, as well as the nurses at Mott’s for saving Owen’s life, and putting up with crazy, uptight parents full of questions every 5 minutes! So far, Owen has had a great life- full of energy and not showing any signs of slowing down! He has his yearly cardiologist appointment in February, where it will be determined when or if he will require another open heart surgery to replace his conduit pulmonary valve.

Caleb Dougherty

Caleb Dougherty 1

We found out that our fourth child was going to be born with a heart defect when we learned that his twin had miscarried. Caleb was diagnosed with Tricuspid Atresia and Double Outlet Right Ventricle that resulted in a hypoplastic right ventricle. Caleb was born at U of M Mott Children’s Hospital and had his first surgery at two days old. Things were pretty rough the first week and it was decided that he needed another surgery to replace a shunt a shunt that wasn’t working for him. One week later, he got some new plumbing. After the second surgery, he was stable, but still unable to come off the ventilator. It was determined that the left side of his diaphragm was paralyzed, so the next week, he had surgery to hold the left side of his diaphragm down. He was finally able to come off the ventilator, but he was still in heart failure. After about two months in the hospital, it was determined that Goldilocks needed another tweak to his shunt. The first one was too small, the second was too big and the third was just right. We were able to go home 10 days after downsizing his shunt.

Caleb did very well with his second stage surgery at 5 months old. We struggled with feeding issues, but were finally able to eliminate the NG tube when he was nine months old. He rocked his Fontan surgery at 2 1/2 years, coming home in just 7 days. We joke that he is getting better at having heart surgery.

Now, Caleb is doing amazing! He is a very strong, active and happy six year old. He loves dirt, mud, trucks, and destroying things. He is in kindergarten and loves gym and recess.