I see you in your hospital gown and tear soaked cheeks being wheeled down to see your baby for the first time. I see you crying while the nurses give you that first flood of information and start explaining to you what this journey might entail. I have watched you as the days have gone on and you’ve been released from the hospital. I saw you load up your car with nothing more than what you brought in.
You don’t get to take your baby home.
You may not live close to the hospital. I have seen you in the weeks since your baby got here, in line in the cafeteria looking defeated as you order a grilled cheese. I have seen you crying in the waiting room on the phone with your loved ones. I have watched you as you muddle through the first days of this experience and you look sad and scared and overwhelmed. I want you to know I see you, I know your pain and I pray for you.
When my son was born at 24 weeks and 6 days, I had no experience with a NICU. In my hometown there are no babies on ventilators in the NICU. The NICU is a place where you go to get anitbiotics and belly lights; it’s not a place where you find yourself fighting the most challenging battle of your life.
But here’s what you should know:
This experience might be scary. It might test all of your patience, your strength and your faith. There might be days when you want to sit in your car and scream because you can’t bear the thought of watching your child struggle any more. There might be days when you spend the entire day crying. I know, I have been there.
There might be times when you think you’ll never get over the hump you’re facing, when you think your baby might never get off of the oscillator, or you’ll never be able to hold them.
For every day you can’t stop crying or feel as if this might never end, there will probably be days when you can celebrate small victories! And you need to celebrate them. Celebrate the first time you get little foot prints given to you — that’s a keepsake your can treasure forever. Celebrate the days when you only cry part of the day. And soak up every second of the days when the really good things happen, because there will come a day when they will put your sweet baby in your arms and it will be the most magical experience of your life. And on the days when things feel easier, and good stuff is happening, I still prayed.
Get to know the NICU nurses. I can remember my first weeks in the unit feeling alone and scared and not knowing where to turn. Unless you are fortunate enough to get a primary right off the bat, you need to get to know the people caring for your baby so you can choose a primary. If you like one of them, ask them if they would take care of your baby regularly. These nurses are your life-line, they will be there to talk you down on the bad days and to soak up the happiness with you on the good days. They know how to take care of your baby in ways you cannot. There cannot be enough emphasis put on that statement either, they will physically keep your child alive when all you might be able to do is stand by and watch.
My son and I would not be where we are today if not for our daytime primary nurse. She understands me as a mother, my concerns for my son, and she cares. She cares so much that she listened when I told her about the other nurses I liked and she went around and asked them to sign up to care for my son on the days she was not there. They have kept me calm, and more importantly, kept my son alive — I am forever grateful for all the wonderful women who love him.
So find a nurse you like and let them know you appreciate them.
Educate yourself. Don’t just sit back and let this experience happen to you, be a part of it. Learn what every number on that monitor means. Understand why they think your baby needs a certain medical intervention. When they tell you something, listen and then educate yourself on it. For some people, this might seem scary, but it is better to be informed and understand what medical professionals are saying. When you aren’t sure about a decision, feel empowered enough to ask about it. You are the parent, and you have a right to ask questions. However, with the ferocity with which you seek knowledge about your child’s health, you must also trust your doctor. I know this is hard, but you have to trust in the people making medical decisions for your child. Know that your baby is a priority for them and they are basing their decisions on fact and experience. They have seen this before and they know what is best.
If you educate yourself on the process, you might feel comfortable enough to ask questions so you can make informed decisions together. When it was time for my son to be vaccinated, I was worried. I read up on vaccinations and vaccine injuries and I wanted my son to get vaccinated, but since he was premature and only weighed 3-pounds 8-ounces when he was 2 months old, I asked that we wait until he got bigger and weight more before he got them. The doctor and I talked it out, put together a plan, and I felt we both respected each other all the more for that conversation.
Lastly, don’t allow yourself to feel inadequate or guilty about the situation you are in. You have no reason to feel guilty. You are a mother and you love your child; you would never do anything to knowingly harm your baby. Don’t allow yourself to sink into the grief and the emotions that come with guilt. It doesn’t help you — it doesn’t make you feel better. But it might impede your ability to love and bond with your baby; it might cloud your mind and affect your ability to make decisions when your baby needs you. And there might be a day when you have to make a decision and you might finally feel needed, so never feel inadequate.
You are a mother, you naturally want to be the caregiver and when you can’t, you might start to feel inadequate. Don’t! You may not be able to bag your baby when they are apneic, you may not be able to hold your baby or even change their diaper, but what you can do is love your baby. Love your baby through this experience, love your baby through the hard times and on the easy days — and try not to feel inadequate.
You are not alone. You are wonderful, beautiful, smart and strong. I believe with faith you will make it through this, and you will be a better woman. And more importantly, a better mother.
Thinkstock image by mvaligursky