First, I want to tell you congratulations on your precious baby. This is not how anyone expects the whole “having a baby” thing to go. When we get pregnant for the first time, it does not occur to us that we might have a baby way too early. We don’t plan for it.
I would like to tell you so much, but for now, I want you to know a few things.
You are a wonderful mother. When my daughter was born at 26 weeks, I felt incredibly guilty. I had done everything in my power to keep her healthy and inside as long as possible, but even though I tried so desperately hard, she still came early. Just because your baby came early does not mean you did something wrong. You are a wonderful mother.
You are your baby’s advocate. Sometimes it will not be easy, but please remember to speak up if you are not comfortable with something. Ask the doctor or nurse to explain what is going on and why. Stay informed. If you feel like something is wrong with your baby, bring it up. This is your baby, and honestly, no one knows your baby better than you do.
It may be a long, difficult road. A lot of people describe the NICU as a rollercoaster because there are so many ups and downs. Celebrate the “ups” no matter how small they are. Find the “ups” whenever you can. When the “downs” come around, and they will, lean on your friends and family. You don’t always have to be strong. The best advice I received while my daughter Ellie was in the NICU was from my mom. It was the day I was discharged from the hospital. I was distraught about leaving Ellie and going home. I didn’t want to leave with empty arms. I just could not figure out how we were going to do it. How were we possibly going to get through the next several months with Ellie in the NICU? Here is what my mom said: “We will get through this. One day at a time.”
Take a lot of pictures. There were days we were not allowed to take pictures of Ellie because they were afraid the flash and having her isolette uncovered would be too much for her. So, whenever we could, we made sure to take pictures. Take pictures the first time you get to hold her. Even if you have to insist on having someone right there with you to take the picture, have the picture taken. I almost did not get a picture of my first time holding Ellie because my first time holding her was skin to skin. They did not want anyone else in the little closed-off space I was in; they thought it should be a “private moment.” I will never regret having those pictures taken. I treasure those pictures. Take pictures of the first time your baby gets to wear clothes. Take pictures of your baby when she is wearing her mask for the bili lights. Take pictures of the tiny diapers she is wearing. Have pictures taken of you doing diaper changes and temperature checks. Have pictures taken of you just sitting by her isolette. I don’t believe you will ever look back and think you took too many pictures.
Life will never be the same. Having a baby in the NICU will change you forever. There is not a day that goes by that I do not think about the advanced medical technology that helped save my 1-pound, 12-ounce baby girl. I think about all of the days I spent sitting by and staring at her completely covered isolette. She was so early and required so much oxygen assistance that the cover had to stay on. Those were hard days, but we did what was best for Ellie. I think about all of the tests she underwent, all of the heel pricks, brain scans, chest x-rays, intubations, hearing tests, eye exams, bradycardia episodes and so much more. I think about and can still hear in my mind all of the beeping from the machines that were keeping her alive. I think about how terrified I was each time I left the hospital, afraid that it would be the last time I would get to see her alive. Above all, I think about how it was totally worth it all and how blessed we are to have our now, nearly 4-year-old, healthy and active little girl.
Find ways that make you feel like you are contributing. When my daughter was in the NICU, I felt as if she was not my own. I tried to do everything I possibly could to feel like I was contributing to her care. I lived for the diaper changes and temperature checks. When I was unable to have her isolette cover off, I would read her books with the cover on. There were days they told me not to talk because it would be too much stimulation, so I just sat there and silently prayed. When she finally hit the weight that she could wear clothes, I made sure I was there to pick out her clothes. I even wrote notes to different nurses that would come on duty later on to tell them a little bit about Ellie. We rarely had the same nurse, so it made me feel better to leave a note for the nurse who would be taking care of her while I was sleeping.
Having a baby in the NICU is not easy, but you will get through this — one day at a time.
Your friend and the mother of a NICU baby
This article originally appeared at The Mighty.