There are so many new things to overcome when becoming a NICU parent. It’s an experience you don’t wish on anyone else. It takes all your emotions and rolls them into one: you are excited because your baby is here, nervous because she is so small, scared because your baby is fighting for her life and overwhelmed because there are so many new terms, rules and guidelines.
One thing I was not prepared for when we started our NICU journey were the multiple surgeries. I knew that having our twin girls so early was going to bring on a lot of challenges that we were going to have to overcome. Kendall was in the hospital for the first 11 months of her life. While she was in the hospital she went through five surgeries. Yes, that is right; I said five. I know when we first started our journey we were not prepared for any type of surgery to come and when we found out Kendall was going to need one we were devastated. Being a NICU parent is hard enough and then to learn that your baby that is so tiny (1lb 5oz.) has to be sedated to have surgery is one of the scariest things we ever had to do. Kendall has been sedated six times, all before she was one, and every time the surgery became more and more intense and scarier because she was being sedated each time.
Kendall’s first surgery didn’t make it any easier to relax; she was having a PDA closure (surgery to close a hole in her heart). The thing to keep in mind is that the doctors know what they are doing and, ultimately we had to put all our faith and trust in them. Her second surgery was on her eyes. Kendall developed retinopathy of prematurity (ROP). She was having trouble with her eyes so they had to go in and do a surgery to fix it. Eyes are sort of a scary situation for me. I am legally blind in one eye so to hear that she was having eye surgery I was both nervous and happy. I was nervous because she was having another surgery, but happy because I didn’t want either of my girls to go through what I did with my eyes. If the doctors were going to fix it, I was more than happy for her to have the surgery. Her third surgery was the one that put me over the top. I was a new parent and a new NICU parent so everything at this point was overwhelming to me. Kendall had been transferred to another hospital because the one she was at said there was nothing else they could do for her. When I got there, I was already feeling down and thought I was going to lose my daughter. We then found out that Kendall was going to have another heart surgery. She had what was called collaterals of the heart which meant her blood was not being oxygenized and was causing her lungs to be wet. Her fourth, fifth, and sixth surgeries were a series of surgeries. Kendall had her first stomach surgery because she needed a g-tube to help her with feedings because she wasn’t eating well. A few days later she had to have emergency surgery because the doctors thought her bowels were coming through her stomach lining. She had actually pulled her g-tube out and the formula was coming through because it hadn’t had enough time to heal. The last surgery happened after she had been home and we had taken her g-tube out, it didn’t heal correctly so she had to have another surgery to seal her opening.
The one thing I learned? Stay positive. For me, the hardest part about being a NICU parent was the fear of losing our child. It is something that some of us go through and it is something that some of us escape. Staying positive is what helped me through all the surgeries and praying that my daughter came out of each surgery alive and better, or even well. My husband was my rock, he was always positive and kept me believing that our little girl was a fighter and was going to bounce back from all these surgeries. Kendall will be three on May 31 and is slightly delayed in speech. Her twin, Brooklynn, endured no surgeries or developmental delays.
For all those parents out there that are going through a series of surgeries, STAY POSITIVE! It is the most important thing for you, your family and your baby.