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A Letter from One NICU Mom to Another

Editor’s note: This is the second in a two-part series of articles guest-written by UAB Medicine patient Laura Winston, who gave birth to a premature baby and spent an extended amount of time in our Neonatal Intensive Care Unit (NICU). Her daughter, Margot, is now healthy and happy at home, where she celebrated her first birthday in August.

Momma, if you’ve found five minutes in your unpredictable schedule to read this, I want you to take a deep breath and repeat these words: “I am not alone.”

I bet you’re thinking, “Well it sure does feel like it.” I was where you are once, so I’m hoping my experience can you lend you some comfort during this unsettling time of mixed emotions and uncertainties.

The second phrase I want you to repeat to yourself is, “I am not to blame.” This feeling was so hard for me, and I still don’t think I’m quite over it. But what I can tell you is this: You did not cause your baby to come early, and there is nothing different you could have done to keep him or her inside of your womb longer. Nothing. It was her time. How can it be her time when she still has growing to do? Only God knows that answer, and it’s not up to us to second guess that one.

It is completely understandable to grieve your pregnancy. You thought you had 40 weeks, right? Well, I only had 28, and let me tell you how much I loved every week of it. It was my only shot at pregnancy. My husband and I were committed to the IVF process. We created embryos, and after a miscarriage and several embryos left to try, we decided to biopsy them, in hopes of finding a viable one. We did. And we only had one. So this was my last chance. I wanted to make the most of it, so I followed all the rules and did everything by the book. I was so proud of my little baby bump. Maybe you were like me and loved every minute of pregnancy. Having your pregnancy cut short is devastating. So let’s acknowledge that being taken away from you and grieve.

Reach Out

This is a scary time full of unknowns, but you can do this, Momma. Somehow your fight or flight response kicks in, and all of your focus is on the child. It may be later on when you start feeling a range of emotions. Let yourself feel these emotions, and let those tears flow. That’s your healing rain. Keep a journal to jot down your emotions and let yourself heal. And most importantly, give yourself some grace. It is so easy to hole yourself up in the NICU and go without talking to anyone but medical staff all day. Reach out to someone, even if you aren’t feeling overwhelmed or down, just to talk. Seek out your OB/GYN, counselor, pastor, or friends. Do not be afraid to be vulnerable – this is a sign of strength!

I was thankful that I had so many people reach out to me and vice-versa. I was able to discuss what was going on in my day-to-day life, vent my frustrations, and share my innermost feelings. This is so important for your mental health. If you take away nothing else from this article besides this point, I feel better knowing that I have at least made you think about it. Forget the stigma and remember that talking to someone is for you and your baby’s well-being. Post-partum depression and anxiety are very real and can occur at any time after pregnancy. If you’re a friend or family member of a NICU mom (or any new mom, for that matter) and you’re reading this, please reach out regularly and check in. Then check in again. It is becoming way too common to hear about women who are struggling with post-partum depression and post-partum anxiety who never showed any signs until it was too late. There may be signs, if you know what to look for. Have the conversation, please.

Take time to focus on yourself as well as your baby. You are recovering from major surgery. My best piece of advice for recovery is to sleep in your own bed at home if you can. If you are staying close by the hospital, sleep in a bed. Trying to sleep in a hospital (because the NICU is still a hospital) is impossible at times. You need uninterrupted sleep for your recovery. I tried to sleep in the NICU room with my child the first night, and needless to say, I didn’t sleep. One of the nurses asked me, “Are you local?” I told her I was, and she said “Go home! You cannot be your best for your child without proper sleep.” I explained to her that I didn’t think I could leave my baby alone. The nurse said, “She isn’t alone! She is in good hands Momma, and you have to take care of yourself too. Let us help you.” And I never looked back.

Accept the Help

This brings me to my next point: Let others help you. The NICU is a special place with a talented staff and infinite resources to assist you. I was so fortunate to be at a hospital that had full-time lactation services, daily snack bags, and amazing March of Dimes classes. There was always someone willing and available to help. Take the help. You are not serving yourself well if you think you can do it all on your own, because you can’t. Accept the help and know that it is from the heart. Remember the saying, “It takes a village to raise a child?” Well this is your village. Take advantage of it.

If you are producing milk, try to time your pumping schedule with your baby’s feeding schedule. Let your nurses know your plan, and they will do their best to try and time feedings with you. Meet with lactation consultants and other resources to guide you through the journey. If you are having trouble producing, try not to stress out. Your baby needs you healthy, and the added pressure to produce breast milk can be overwhelming. You have too much going on to suffer from guilt and shame on this subject. If you have done all you can and have given it your all, then that is all you can do. Make peace with it and move on. Remember: Fed is best!

In the midst of all these emotions you are feeling is an amazing miracle of life. Not only have you just become Mom, you have also become Advocate. Your Momma Bear instincts are kicking in, and you have doctors and nurses controlling your child’s existence when all you want to do is hold and love her. The NICU is full of brilliantly skilled people who are doing everything in the best interest of your child. But that doesn’t mean you can’t ask questions. The NICU staff is more than willing to answer questions and help you understand what is happening. If you feel that something seems off, or if you have questions, speak up. The old saying, “If you see something, say something” rings true.

Educate Yourself

I remember having the feeling that my daughter may still be hungry. It’s hard to even imagine how you could validate this concern when your baby is getting all of her food through a feeding tube, but I just couldn’t shake the feeling. She was still gaining weight, but it seemed to be slowing down and I was getting worried. I spoke with our neonatologist and asked if there was anything we could do to give her more food. It is a delicate balance between fluids and milk. She was getting the appropriate amount of nourishment based on her plan. However, my team of doctors sat down with me to hear my concerns. After assessing the plan and my request, the team decided to double the fortifier. Eventually, her weight gain started to pick up, and I felt like I had accomplished a small victory in the midst of constant setbacks.

The only way you are going to feel comfortable in this environment is to become educated. Ask questions, and you’ll get answers. I kept a journal and wrote down questions I had throughout the day. You will be asking a lot of “whys,” and that’s okay. Don’t apologize for your ignorance. You didn’t think you would need to read a guide to the NICU along with all your other baby books. Your knowledge will give you confidence, and you won’t feel as helpless as you did in the beginning. You have unknowingly signed up for a crash course in neonatology. Embrace it.

The journey is unknown. You cannot speculate on how long your baby will be in the NICU. The best thing you can do is to not have any expectations. Leave them at the door. There’s no room for them here. Once you accept that you are living this journey day by day, only then will your focus become clear. You start taking the good with the bad, the victories with the setbacks. And as the days go by, you start to see progress. Remember that your baby has left his or her home early, and they have to have a place to thrive outside your womb. Embrace the journey as best you can. You’ll look back on it one day with amazement – at yourself and your strength, and mostly with immense gratitude for the people who made a difference in your baby’s life.

Learn more about UAB Medicine’s Regional Neonatal Intensive Care Unit.