WHAT WAS YOUR NICU JOURNEY? WHAT ADVICE WOULD YOU OFFER TO MOTHERS WHO HAVE A SIMILAR EXPERIENCE?
I have to start my NICU journey with a full disclosure that my son was my first child and my first hospital experience, I feel lucky that I have no other comparison. I also am lucky that I am one of the mothers who had a baby to bring home from the NICU, I am continually filled with gratitude for that fact alone.
My NICU journey started in the delivery room, we were fortunate to know our son would be born with his condition and as a result we had a NICU doctor and team of nurses ready to tend to him. After delivery, he was immediately handed to this team and stayed in their care for the next 21 days. In all honesty, they were the longest 21 days of my life – I recall my husband and I having conversations that we couldn’t believe it had only been (x) number of days. I remember every song that was popular on the radio because of the trips to and from the hospital – specifically Boy by Lee Brice (it still makes me tear up).
At 36 hours old our son underwent an 11 hour surgery and 2 blood transfusions, he was fully ‘under’ for the following 3 days, followed by a week with morphine withdraw and under the jaundice light. His pelvis has been cut in half on both sides and as a result was pinned back together, with his legs also bound together. We were not able to pick him up for (just shy of) 3 weeks following his surgery.
Some days I felt like his recovery was going great, and other days it felt like we were taking 5 steps back and encountering unforeseen complications. I diligently set my alarm for every three hours of the day and night and pumped, tracked production and labeled the milk ready to be taken in each day – I felt like it was the only good thing I could give to my new baby. We sat by his bed, tried to take part in any care, wound cleaning, diaper changes and eventually bottle feeds (we would prop his head up in his bed since he couldn’t be lifted out) that we could. There were days when we would leave the hospital and not speak, if only for the reason we had nothing left in us.
During this time, I was unable to talk to friends or family. I carried a sense of guilt that maybe there was something I did to cause this to happen to my baby (in fact, what my son has is an unexplained rare condition that affects 1 in 50,000) – but my mind couldn’t reason this at the time. Moreover, I knew that what I needed for my new baby was strength so the survival mode / adrenaline took over – I would process it all later but at that time it was not about me (and really in hindsight it never was).
If I could offer advice to another mother or parents with a similar experience it would be to remember to eat – it is such simple advice – but as a new mom you are still recovering, you need nourishment. Thankfully I have a husband who knew this and was able to be strong for me and our new baby. He reminded me to eat, made sure we left the hospital to get lunch and always made sure I had a smoothie on the way out the door in the morning. The only other advice I would offer would be to seek help when you are ready – the experience is a lot to process for anyone and it will make a world of difference.
There is a quote that has helped me navigate the fear that comes with having a child that will endure many doctors visits and potential surgeries as well as the fear of having a second baby. From Paulo Coelho’s novel The Fifth Mountain - “Fear reaches only to the point the unavoidable happens, after that it loses all meaning.” For me it emphasizes the concept that fear is pointless and wasteful - when we come upon the challenges and obstacles we fear the only choice we have is to overcome.
I can’t write about the NICU without mentioning one very special nurse – she became my son’s primary care nurse towards the end of our stay. Once he was able to be picked up I would find her holding him (with all his tube and cords in tow). She gave him his first bath and I felt like he was loved when I couldn’t be there. I will forever be thankful for the kindness, love and compassion she showed my son and our family. Additionally, my amazing sister made a last minute trip to NC when I was in labor and arrived shortly after my son had been born – without her I don’t think I would have figured out the pumping thing or laughed during such a difficult time.
WHAT WAS THE INSPIRATION BEHIND CREATING A TRIBE CALLED MOTHER?
I truthfully believe you create what you need. I created A TRIBE CALLED MOTHER because I was looking to connect with other mothers on a deeper level. I wanted to hear the raw honest stories of motherhood and everything in between. I had been privileged to hear different women’s experiences with things like infertility, divorce, co-parenting, miscarriage, depression etc. I knew that we were all fighting some kind of battle and that maybe I could create something that would help women see that someone else had also been there and made it through. I also craved stories of wisdom from older women who had experienced motherhood and the years beyond – the women who carry a silent strength and sparkle in their eye because they remember being there. I created it so women can show their vulnerability and the resulting strength that accompanies all the beautiful chaos.
WHAT WAS YOUR EXPERIENCE WITH PPD?
We brought my son home from the hospital just shy of one month old – his legs bound together for the following 4 weeks and two tubes coming from his body. Once he was cleared medically we moved – from North Carolina to Texas – where we lived in a small apartment with our new baby, dog and no extended family – 3 months later we moved once again to Minnesota. I felt isolated, alone, guilty, angry and basically any other range of negative emotions one can feel. The long story short, I was struggling with some form of postpartum depression / anxiety / and or PTSD (I never sought traditional help to formally diagnose it). I knew something was not right because I truly felt my only purpose was to nurse my son – and if I could just switch him to formula then I really was not needed (it is hard for me to be vulnerable enough to admit that). I started seeking healing in every alternative form I could get my hands on – crystals, tarot cards, oils, reiki etc. I felt that I had to undo my sons trauma from everything he had gone through (it’s funny how projection works like that – I needed to heal my own trauma and stories). Finally, when my son was 8 months old I told my husband I needed help. Like the amazing rock he, his response was, “of course – whatever it takes we will do.”
HOW HAS MOTHERHOOD CHANGED YOUR PERSPECTIVE?
Motherhood has completely shifted the lens through which I view the world. I carry more compassion and empathy than I ever knew possible. I have experienced a love greater that I previously knew existed. I have a level of patience for my son that doesn’t match any part of my impatient personality. I want a better world, filled with kindness and clean air. I know how idealistic this all sounds and of course I have my difficult days where I use all the single use plastics, cuss at my husband, and say eff you world, but my worst day as a mother is better than my best day before I became one.
ARE THERE ANY RESOURCES YOU WOULD RECOMMEND THAT HAVE SIGNIFICANTLY AIDED YOU ON YOUR MOTHERHOOD JOURNEY?
There have been a few big game changers for me –
1. The help I sought for my guilt, stories and issues regarding my son’s condition was a life coach named Shelli Lawrence. Shelli changed my life, literally. She helped me come to a place that I can honestly say that my story is not one of trauma but one of beauty, lessons and strength. That I was given this son as a gift and that this is his journey – my job is to love and support him and see him for whoever he chooses to be. The story of his birth and the time following it, is a gift that gave my husband and I gratitude, strength individually and in our marriage. There is no bad and that the universe has been kind to us. It has lead us across the USA giving us access to medical care and hospitals people dream of being able seek treatment at. I am able to see how I felt through the difficult times with compassion and acceptance for who I was in that moment – and truly with an ease that who I am writing this is also fluid.
2. I have moved a lot as a new mom, living in Minnesota I came across THE MOMMA TRIBE on a MN Facebook moms group and I thought – what a similar name to what I created – I want to meet this person and learn more. Its funny how the world can be so serendipitous – I met a woman named Meggie who had created a beautiful community where mothers meet virtually, discuss the challenges of motherhood alongside experts in areas of childhood development, marriage and self-care. I joined this community and it has been life changing. It has given me a sense of belonging and confidence and helped me to meet and make some beautiful friends.