“Being Discharged From the Hospital While My Baby Was in the NICU“ originally appeared on The Mighty, and was reprinted with permission.
It was a warm day on July 23, and I was still in a bit of pain. I woke up knowing what the day would bring and a part of me felt ready, but anxious. I had spent the night before preparing to be discharged from the hospital, after spending 10 days in Labor & Delivery. I would be going home to start my new normal. I was officially a “NICU Mom” to a micro preemie baby boy. Wow! While I looked forward to recovering from my c-section in the comfort of my own home, a part of me felt sad. I had to leave my new baby in the hospital, with people I didn’t know but had to trust. It felt awkward and unsettling. How would I cope? How would I be able to relax? How would I be able to sleep at night being away from my first born who was fighting for his life?
My husband and I were told we could call and come visit anytime we wanted. We also only lived about 12 minutes from the hospital, which was very comforting. The first few days were a blur. I was numb and on autopilot. I don’t remember crying very much until day nine when things took a turn with our son’s health. I felt like I was aging so quickly and trying to keep it together for my family. People would always ask how my son Jaxson was doing; no one every really asked how I was doing. Did that bother me? A little but naturally everyone was worried about my 22-week preemie. Also, if someone had asked me how I was doing, I may have fallen apart. I gained strength I never knew existed. People would comment on “how well” we were handling our circumstances. Little did they know I was aching inside.
Not many understand the emotional toll that parents experience when it comes to leaving their baby in the NICU. There was no manual for it, and not many people talk about it. For days, weeks and months it felt like we were living on edge. One day could be great and then the next everything could change. Our brains were constantly in learning mode, soaking up medical terms and numbers nonstop. There was no time to curl up in bed and be sad. Nope, I was pumping around the clock, going back and forth to the hospital and trying to create some sort of balance. One of Jaxson’s doctors always encouraged my husband and I to spend time together and do fun things.
The first couple of months were hard because I was still recovering from my c-section and Jaxson was still a bit medically fragile. We spent time together by Jaxson’s bedside and it made us happy, comfortable so to speak. Prior to having Jaxson, I wasn’t fond of hospitals, so it was interesting to me that I found comfort in a place that used to freak me out. I think the peace of mind came from just being present and not having to worry about the hospital calling us with an emergency … we were right there. Let me tell you, the fear I had going to bed at night was so real. Although Jaxson was pretty stable after the first couple of months, going to bed was still the hardest.
So many parents are experiencing the NICU for the first time and trying to process their new normal. Being sad, afraid, anxious, stressed, unsure, etc., is normal. If you are feeling any of these things, let me give you a little advice.
1. Are people telling you you’re overreacting? Has someone said, “Stop being sad”? Do you feel like no one understands?
The people in your village and your circle have got to understand that what you are going through can be physically, emotionally, mentally and even spiritually draining. If they don’t understand that, please share this post with them! Of course your family and friends want what’s best for you and some may not understand. You may start crying or feel sad and depressed. That’s OK, you miss your baby. What you are going through isn’t easy. Having a moment is OK. Once you have your moment, pick yourself up and keep going.
I encourage you to tell your family and friends what kind of support you need from them. If you don’t feel like talking or want visitors, let them know in a nice way. If you need help, be honest about it. If you just need someone to listen to you vent, there are great support groups on Facebook and maybe even at your hospital, with other parents who will understand what you are going through. And for the strangers and coworkers who may say something unsupportive, it’s OK to correct them and let them know if they need to mind their own business.
2. Balance: Create a schedule and routine that works for you.
I found having a (mostly) consistent schedule was not only good for me and my husband, but Jaxson also. For the first couple of weeks we were kind of winging it, but I always made sure to go once or twice a day and spent a few hours. Some may not agree with me, but sitting by my son’s bedside for 24 hours wasn’t healthy for me. I was consistently staring at the monitor and often times unable to just chill. Also it seemed like Jaxson could feel our presence, and sometimes he wouldn’t rest like he needed to. As time went on, we really found our groove. My husband loved going first thing in the morning to be a part of rounds before he went to work. This allowed us to know the plan for the day — he would relay the message to me and I would go later in the afternoon, and sometimes we would go back together at night. We also made concessions for times when Jaxson may have had a rough day or a procedure being done.
Create a schedule and routine that works for you. I believe this is a great way to navigate during this journey. If your schedule allows, go at the times you know your baby will be awake and at the time when you can participate in their care. Know that it is OK to take a day of rest. The back-and-forth trips can be draining — it’s OK to call throughout the day and check in if you can’t go. Please don’t let the guilt of not going for a visit get to you. Being in the NICU is so different from being outside. It can be easy to lose track of time and get totally consumed. Take breaks, go outside and get some air. Have lunch away from the hospital, take a walk, take a nap. Having creative projects kept me occupied outside of the NICU.
3. Make every moment count and participate.
Life is so precious, and having a child admitted in the NICU or PICU can certainly make you put things into perspective. During this time, I discovered who and what really matters. I didn’t sweat the small things any longer because I understood just how quickly things can change.
Stay in the moment. When you visit your child, really allow yourself to be present. I shut out the world when I was in Jaxson’s room. There was no talking on the phone or texting really unless I was sending a message to my husband to give an update. We took photos and video to share and keep for our personal memories. But while we were in his room, we tried our very best to focus on him; the world could wait.
If possible, help with their care, such as bath time, taking their temperature, changing their diaper and feedings. But if your baby does need the care of nurses and doctors, remember they still need your love. Your child may be being cared for by others, but you are their parent. I read books to my son, and I prayed over him daily. I rested my hands on Jaxson’s incubator and poured out my heart to God. I would even lay hands on my son through the two small openings. If possible, play music and talk to your child.
4. Self-care: treat yourself.
At seven days postpartum, before going to visit Jaxson for the day, we went to the beach. I desperately needed the vitamin D and a moment to just breathe in the fresh air. Doing this before going to the hospital put me in a good mood and head space to face the NICU and what the day would bring.
And lastly, remember to take care of yourself. Please don’t let guilt consume you if you need to take a break, everyone needs one! I hope these words encourage you.