Part 1 of Zayn’s heart journey: He was perfectly imperfect

Hi, my name is Suzie, I am a Mama to 3 amazing kids. Makenna 12, Giancarlo 11, and my heart warrior Zayn 2. Our life has been pretty good, my older two have had some minor health issues growing up, ear tubes, and food allergies (I remember thinking nothing can be worse than having a child with life-threatening food allergies!) yikes was I wrong. I quickly learned you have NO idea how hard having a medically complex child is until you are quite literally thrown into it, as much as you try and prepare it’s nothing like that, it’s both parts devastating and beautiful.

We found out in January 2020 we (my husband Chris and I) were expecting that this would be our first child together. We both have two healthy children from previous marriages, so why would this be any different? When I started to go to my first couple of appointments COVID was rearing its ugly head and my husband was not allowed to come to any appointments so I always went alone and updated him after.

Everything was going very well I had almost no symptoms, no nausea, and I felt fantastic compared to my other pregnancies. At 18 weeks they sent me for my anatomy scan, I remember watching the tech going back to the heart many times but never seeming nervous or letting on to anything abnormal but I knew it didn’t look right from seeing this twice before.

We asked for the sex of the baby to be put in an envelope and we were going to have a gender reveal party later that day with close family, she gladly did so and wished me good luck! I called my husband after and told him how she went back to the heart many times and he asked if she said anything I said no, and we brushed it off. An hour before friends and family came we got a phone call from the Dr. and she specifically said to get my husband for the conversation, she told us that our son had the worst heart defect a baby could have and to prepare for the worst. She referred us to a hospital in New Hampshire that would do genetics and a more specific ultrasound so we could hear our options.

I remember hitting the floor and sobbing, the next few days were a blur and I didn’t leave the bed and I cried and cried, I couldn’t even search on google because I wasn’t given a name of the defect.

Two hospitals later and a diagnosis of Hypoplastic Left Heart Syndrome we were strongly advised to terminate but it was never an option for me, our little boy was already such a presence and I knew he’d be a force to reckon with. We chose life and so has he.

Zayn Grand made a 2-week early entrance on September 2, 2020. He was perfectly imperfect, the most beautiful shade of purple, and was screaming his head off until they brought him close and I got to kiss that beautiful head and snuggle him head to head, he almost instantly calmed, then just like that he was gone, rushed to Boston children's and I wouldn’t see him again for 12 ish hours. He didn’t last long breathing on his own and was rushed to the cath lab. When I saw him the next day, I waddled on over from my hospital to his, freshly postpartum with a catheter still in he was intubated and they were asking me to consent for his first open heart surgery which would be the next day. I couldn’t help but lose it, seeing my newborn with tubes and wires and IV’s connected to every part of him.

On September 4, 2020, Zayn went in for his first open heart surgery, The Norwood. It went exactly as planned and he rocked it. In the coming weeks, they would try to extubate him 4 times and he failed every time, each time breaking my heart all over again. Zayn needed his diaphragm to be plicated 2 times before he would successfully extubate. After being extubated Zayn suffered a stroke that caused brain damage but we wouldn't know how that would effect him until he was older. Our next hurdle became feeding, I asked for a g-tube and they gladly gave it(don’t fight this parents, it is a lifesaver) One more thing I did learn as a pumping Mama of a CHD baby is they almost always add formula to your breast milk to give your baby calories.

Feeding became one of the biggest issues and still is to this day. We stayed inpatient for a month and a half and we only got home for a few days before we were readmitted for feeding Intolerance and GI bleeding. This and vomiting continued for 3 months, with many appointments and remittance to Boston children’s before they ultimately decided Zayn was ready for his next open heart surgery The Glenn on December 9, 2020.

Christmas donations will be open until Christmas day. Please if you can find it in your heart to donate to our Wisconsin Children's Hospital CICU families we would appreciate it so very much! The money goes DIRECTLY to our families and helps with expenses while they are in the hospital for the holidays.

https://www.mightycause.com/story/Helpaheartwarrior

Stay safe and HAPPY HOLIDAYS EVERYONE!!