Being a nicu mama is one of the hardest experiences to go through.

When I started this journey, I had no idea what I was in for. July 2017, almost a year after we got married, my husband and I decided to try to have a baby. We have two kids from his previous marriage but we wanted an “ours” baby. I’m not sure why but my gut always said that having a baby would be difficult for me . So when I went off the pill and got a positive pregnancy test in August 2017, I was both scared and and happily shocked – only to find out very soon after that it was a chemical pregnancy. Disappointed, but following my gut, I decided to start working with a fertility doctor. After all the blood work and testing for both me and my husband came back, I was given no explanation as to why I couldn’t get pregnant except “unexplained infertility,” an extremely frustrating diagnosis.  

We tried a few months of clomid and timed intercourse, two failed IUIs, and then we decided to move to IVF. I was only 32, and my doctor was very confident that IVF would be the answer to our prayers. After the round of IVF, I had horrible results and still no explanation. I didn’t even have one healthy embryo to attempt implantation with. So I took matters into my own hands . I decided to give my body a rest for two months before trying again and tried anything to get a different result the next time. I did acupuncture with a fertility specialist, went gluten free, took metformin, worked out everyday, etc. In July 2018, I went to the doctor to start round 2, to do the blood work to get the go ahead to start injecting, when I got a phone call from my doctor – I was pregnant! I couldn’t believe it.  

I was so scared that I’d lose the baby, or that it wasn’t real again, but week after week, I’d go for monitoring and there he was: a heartbeat, ten fingers and ten toes. Everything had been going pretty effortlessly, until our 20 week growth scan. He had measured a little small (20th percentile) and since I had high blood pressure before even getting pregnant, my doctor decided I would get growth scans every four weeks. At 24 weeks, he measured in the 40th percentile and we were thrilled ! At 27 weeks, he was back down to the 11th percentile and we were very worried that he had IUGR ( intrauterine growth restriction). At 29 weeks, he measured in the 7th percentile and since it was so low, they decided to scan my umbilical cord flow which showed abnormal levels. That day I was admitted to the hospital and was told I wasn’t leaving until I had our baby, whenever that may be. I was on strict hospital bed rest and the baby and my cord were monitored twice a day. At 31 weeks, my cord flow went into reverse and was told I was having an emergency c-section. Hearing I was going to have our baby who was measuring so small at 31 weeks was the scariest day of my life.  On Jan 19, 2019, we welcomed our gorgeous, strong, tough son, Carter Gray. Once he was born, he needed to be intubated because his lungs were so underdeveloped. He weighed 3 pounds 2 ounces and while 3 pounds is SO small, it turned out he never had IUGR as he was born in the 26th percentile. My doctor later told me that Carter and I must have angels looking out for us because his misdiagnosis of IUGR literally saved his life and likely mine too. Two days after having Carter, I developed postpartum preeclampsia. I was on 3 magnesium drips in 4 days. The doctor was surprised I didn’t have a stroke or seizure – angels watching out again. 

nicu baby suffering from heart complications

Carter was intubated for the first 2 1/2 weeks of his life, and I didn’t get to hold him until he was three weeks old. We knew he had some health concerns (a droopy eyelid that will be fixed in the future and a VSD or hole in his heart) but nothing to be overly concerned about. #nicumamas deserve the utmost support, compassion and love because being a nicu mama is one of the hardest experiences to go through.  I spent 74 days in the nicu with Carter. I didn’t miss a single day. I sat there for 12 hours a day, and I moved to be closer to the hospital and lived out of a suitcase for 74 days. On April 3, 2019, the nicu told us we could bring our boy home and we couldn’t have been more excited! We couldn’t wait for my step kids to meet him, to bring him home and start life as a family of 5. 

Within hours of being home, I knew something was wrong with Carter. Two days later, I rushed him back to the emergency room and found out he was in total heart failure. Yes, you are reading that correctly- one of the best hospitals / nicus in NYC sent us home with a baby in total heart failure. That then became the scariest day of my life.  They said if I didn’t follow my gut and bring him back that night, he very possibly could have died in his sleep in our home. He was admitted to the picu, placed back on oxygen and we found out shortly after that it was inevitable he needed to have open heart surgery within the next few days. On April 15, 2019, Carter had open heart surgery to repair the hole in his heart. There’s no way to describe the feeling a mother has handing over her 7 pound sick baby to people to cut him open, scar his chest, stop his heart and place him on the bypass machine. I was shaking and crying in fear all day.  After 46 minutes on bypass, the surgery was over they told us all went well. They would take the breathing tube out 24-48 hours post surgery and his recovery would rapidly continue. Carter was on the breathing tube for 10 days. He wasn’t recovering the way they anticipated. I would look at my sweet beautiful son laying swollen, bruised, with tubes and wires all over and unable to breathe on his own and felt totally helpless. They even brought the heart failure team in to talk to us about potential needs for a heart transplant. But 10 days post surgery, Carter decided it was time. Time to recover and get better. Everything apparently has always been on Carter’s time.  My fighter woke up. They took the breathing tube out and 2 weeks later, they felt certain Carter was totally fine and ready to come home again – for real this time. 

Carter came home on May 3, 2019, exactly one month after he was discharged from the nicu the first time – and this time we haven’t gone back. Our angel , our miracle, has made an amazingly miraculous recovery and is a totally normal (slightly tiny) 5-month-old baby. We follow up with all his doctors and they all say his heart looks perfect – and he is perfect. I had a pretty difficult entrance into Motherhood. One I’ll carry with me everyday for the rest of my life. But what I learned more than anything throughout this whole, long journey, is that you never really know how tough and strong you can be until you have no choice but to be that tough and strong. I fought everyday for Carter before he was born and most certainly after he was born, and I will fight for him everyday I’m on this earth. He is my angel, my miracle. He is one amazingly sweet and very special little boy who I have already learned so much from. Never give up hope no matter how dark things may seem- there’s always a light – sometimes it just takes longer to see it.