Benjamin Miller filmed his son’s first year, posted the video online on his wife’s birthday and the beautiful touching story went viral on YouTube with currently more than 7 million views. Ward finally got to go home after spending more than 100 days in our NICU. This is Lyndsey’s advice for all the parents out there going through the same thing right at this moment.
I hear you are on the same journey that I have been on. I would like to offer you some encouragement, advice, and tips from my own NICU experience.
I am pretty sure right now you have the most overwhelming feelings of guilt. I blamed myself for a long time. My body failed me at its most important time. I racked my brain to figure out what I might have done to make this happen. I finally had to come to the realization that the guilt I felt over my son’s preterm birth was not helping him get better. I had to make my son my main focus, stay positive, and cling to my faith in God. From the very beginning we had prayed for a healthy baby, and I still believed that is what He blessed us with, he just came earlier than we expected.
As you already know, there are good days and bad days, ups and downs, and many, many bumps in the road. I know it’s hard to stay positive when you are given unfavorable statistics and test results, but this is when you need to be the strongest. People would ask me, “How do you do it?” and I would say, “He is my baby. I am doing what any mommy would do.” But, more importantly, I would tell them that I HAVE to be strong for him because he is being so strong for me! Preemies are fighters! Don’t forget that!
Kangaroo your baby as much as you can. Along with prayer, I truly believe Ward was healed through all the skin to skin time. Not only did it heal him, it healed me as well. On a daily basis Ward was kangaroo’d no less than 5 hours/day between my husband and me, and even longer on the weekends. Nationwide Children’s nurses are huge proponents for kangarooing. Do it! It works! I know it may be intimidating the first few times, but you will get used to it.
Get as involved with your baby’s care as you are allowed. Even if it’s only holding his head or feet, you need to be touching him and talking to him. I was allowed to do Ward’s care (changing his diaper, cleaning his eyes and mouth, and bathing him). Doing his care made me feel more like his mommy even if I was doing it through his isolette.
Be an Advocate
One of the most important things I can tell you is to stay informed and ask questions! I made sure I never missed the doctor’s rounds. This is essential, this is where you find out what exactly is going on with your baby and what that day’s plan is. They know you are not a doctor, so ask them questions. If you don’t agree with or understand something, say so. You are your baby’s advocate. We had many discussions with his doctors about our concerns and plans for his care.
Team up with your favorite nurses
Find a nurse that you connect with who shares your same love for your baby. Ask them to be your primary care nurse. I truly believe that it was Ward’s primary care nurse who helped him come home when he did. I never had to worry when I knew she was there. I knew she had my son’s best interest at heart. I knew she loved him as if he were her child. She called him her prince and always told him how beautiful he was. I knew she would be an advocate for my son if I was not there. She was the best resource and sounding board. She has become part of our family since our stay in the NICU and she even came to Ward’s 1st birthday party. We visit her, at the hospital from time to time and I often send her pictures and updates.
Make a Schedule
Find a routine that works for you. As hard as it is to leave, you need a break. I had a hard time with this too, but you really need a breather, and there is nothing wrong with that. Being a NICU mommy is draining emotionally, mentally, physically, and spiritually. Take some time for yourself and don’t forget to take care of you. We also had a visitors schedule, mainly for my sanity. I needed days where it was just me, my husband and my son. I didn’t have to answer a 1000 questions from visitors. It was just us. It was so hard to tell our family and friends that they couldn’t come to visit on certain days, but it was so good for me, my lucidity, and my marriage.
Don’t forget about your spouse/significant other. Talk. Cry. Stay connected. This is such a stressful time. Do not take it out on each other. Do not blame one another. Draw on each other’s strengths and pray together. This time could rip you apart if you let it. You need to give your relationship the attention it requires to make it through together.
Remember God is good and always faithful! Draw on Him for strength, comfort, and peace. He will carry you through this!
Our journeys will differ but we are all in the ‘preemie parents club.’ This is a life changer. But, I honestly would not have changed it for the world. Yes, I do wish I could take away the pain my son endured, but this journey made me a better mommy and an all around better person. Stay strong! You will make it through this!