NICU Awareness Month: A Mother’s Story

I am so excited to welcome a guest post to our site today, for a very special reason.

I grew up with cousins who are like sisters to me. Bradie is one of them. She lives in British Columbia and has two beautiful children. Many wonder about the experience of families who have had children in the NICU, and Bradie was kind enough to let me share her words with all of you. Thank you for sharing your story, Bee. Love you guys so much❤️.

September 1 is the first day of NICU Awareness Month. “NICU Awareness Month is designed to honor families experiencing a stay in the neonatal intensive care unit and the health professionals who care for them (https://www.nicuawareness.org). It has also been almost 1 year since my son, Brock Dickson, was born at 27 weeks +1 on September 15, 2020 at 1.5 pounds. Therefore, this post will try to cover both groups mentioned in the quote, and will be written from the perspective of a mother who spent 6 months in the NICU. 

To the health care professionals that care for these sweet angels: 

Where would families be without you? I still remember so clearly laying down scared shitless during my caesarean section, and a nurse leaning down to me and telling me that everything was going to be okay, and that they were going to take great care of my baby. I was instantly relieved and calm. And after I got to see him, they rolled him away in basically a large ziploc bag and saved his life. The nurses, neonatologists, respiratory therapists, and several other important staff showed up every day for my son and for our family. They were always very professional and I remember being so intimidated by them at first (and those that know me know that I do not shy easily). Those feelings went away quickly though, and I was overcome with tears of gratitude during my first rounds. Fourteen people were there. FOURTEEN. Fourteen people cared enough about my baby to meet about him every morning and make a plan. I remember when Brock was 3 months old and came back from one of his surgeries. The surgeon dropped him off personally. He told me that things went very well, and then he went off to his next patient. It was so matter-of-fact. It was just his job. Did he realize he just fixed 3 hernias in a 4 pound baby? It was like he just dropped off my Skip-the-Dishes order. Does this man know how incredible he is? Like do these professionals honestly know the impact they have on families and their community? Always professional…but also human. I laughed, ate with, shared stories, and shed many tears with Brock’s nurses and doctors throughout our stay. On a recent visit to the NICU for follow-up appointments, I ran into two of Brock’s nurses. They were so happy to see him doing so well. The one nurse said that it had been a really hard summer in the NICU. They were short-staffed and there were so many sick babies and babies that did not make it. Who else besides members of a NICU team go to work every day knowing that their best might not be enough? Who goes to work to have their heart broken over and over? Perhaps babies aren’t the only angels in a NICU. 

To families who have stayed in the NICU:

Despite being in the NICU for 6 months, I have no idea what you went through. A NICU experience is like one’s fingerprint. No two are the same. I know people are just trying to help when they say “Oh I had a baby at 32 weeks”, or “I had twins at 36 weeks and spent 2 months there”, or anything similar. But they don’t know. They have no idea what I went through or what you went through. Someone can stay in the NICU for 3 weeks and perceive it as the most traumatizing experience ever, and someone could stay for 6 months and have a “good” experience like myself. I say “good” in quotations for the obvious reason that some days were not so good…So my advice is to continue to reach out for support if and when you need it, but don’t let anyone tell you that they know how you feel. Because they don’t. It might not bug you in the moment, but trust me, it will annoy you when you think about it later. And your annoyance will come out at the wrong time, such as when a stranger on the street asked me about Brock and I told her that he was premature, and she said her daughter was premature and she knew EXACTLY what I went through. Since we were stopped at a crosswalk waiting for the light, I proceeded to ask her if she was in the NICU during a global pandemic when absolutely no one was allowed to visit? Did she live in Ronald McDonald House 4 hours from home for 6 months while her other child stayed with grandparents in another province? Did she watch her baby be intubated three times? Did they have to put her baby in an induced coma for a few weeks? Did her baby go home with BiPAP and a Gtube? Did she also have a breakdown when her NICU neighbor’s baby passed away after 90 days? Nope, she did not. I felt so bad after because her intentions were kind, but I just couldn’t smile, nod, and walk away that day as I had done so many other times. I now take the time to correct people politely.

I also think it is okay that no one knows how you feel, and likely never will. I have kept so much inside about my experience, not because I am bottling it up or have troubles communicating, but because I don’t want to share with others, including my husband. Things that I experienced with my son in his first 6 months of life, and the feelings that I had during and after our time in the NICU, are very precious to me. The experiences and feelings are mine, and mine alone (and Brock’s!). I feel slightly possessive over them. My son and I have a bond that is explainable, but I don’t want to explain it. I want to keep these private moments between myself and him. I kept a journal for him so that he can read about them when he is older. Besides myself, he really is the only one privy to them. 

To those staying in the NICU right now: 

Trust your doctors and nurses. It can be so hard to do, but they have helped hundreds and thousands of babies. They know more than you. With that being said, you will learn your baby’s habits and quirks, and you will know them better than anyone in the NICU. This will make you their biggest advocate. Make sure you speak up for your baby, and you should ask lots of questions when you are uncomfortable or unsure what is going on. I have a largely scientific background, and I got told a lot that they never had a patient as “confident” as me. I am a teacher, and I know that “confident” is a nice way of saying “challenging”. I challenged them daily. But at the end of the day, I trusted their decisions and I am so glad I did. There are still things I second guess in hindsight, and I’m sure the doctors do, too. They are, afterall, human and constantly learning. I still have questions that they are unable to answer. Brock’s hernia surgery set his breathing back so much. Should we have waited another month? Should we have used a stronger dose of fluticasone the first time he was on it? Would it have helped or been too much? Well the professionals don’t know, but does it really matter? My son is excelling now. 

Share your story with others, or don’t share it. It’s yours and your baby’s. The only advice I will give is to take lots of videos and pictures, because no matter when your baby was born, you will be amazed at the changes and progress over the first year and you will want those photos to look back on. Perhaps next year at this time you will be writing your own NICU Awareness post, and like every mother’s stay in the NICU, your reflections will be different from mine and everyone else’s. I look forward to hearing about yours. 

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