What’s your story?
We are a young family from a city just outside of Vancouver, Canada. My husband, James, and I are high school sweethearts and we have been married for 7 years this summer. In April of 2016, I found myself in preterm labour, with our second child, and our world turned upside down. I stayed on bedrest for a week, while the maternal-fetal medicine doctors at our local Women’s Hospital attempted to keep our medically fragile baby girl inside. Despite our efforts, though, Evelyn Faith made her dramatic appearance at my 32-week pregnancy mark. We spent four months in the NICU before bringing her home for the first time. Since this past spring, we’ve had eight hospital admissions, ranging from one night to a six-week stay following complications from her first open heart surgery. In our new life journey balancing a marriage, a very busy 4-year-old son, Noah, and a child with such medical complexities, we attempt to find silver linings in each day, and just take it all one step at a time.
Tell us about Evelyn and her medical complexities.
Evelyn was born eight weeks prematurely, weighing just 1530 grams (roughly 3lbs), with a variety of medical complexities. She currently has no diagnosis, just a list of anomalies that have occurred in her body. It’s most likely something called VACTERLS Association. However, even this query diagnosis does not encompass all of her. These complexities range from a complex Congenital Heart Defect to a difficult airway (as a result of Pierre Robin Sequence which resulted in a tracheostomy), a cleft palate, an H-type tracheolesphogeal fistula (a hole between her esophagus and trachea), a missing rib set and butterfly vertebrae. This is all pretty rare. For these issues to exist together in one body certainly makes Evelyn one of a kind! Despite these medical details, though, she is a feisty and strong-willed baby girl who continues to push through statistics and assumptions set against her. She is bright and funny and she is growing in personality and strength each day.
It is difficult adjusting to life at home…you’re essentially caring for Evelyn at all hours. What has it been like transitioning from the NICU to real life at home?
My husband and I both care for Evelyn when he is home from work. And we are also given a set number of hours each week for respite, most of which occur overnight so we can sleep uninterrupted. Having this nursing in place is often mandatory for caregivers bringing home a child with a tracheostomy, as their needs and possible risks are so much more than an average baby.
With that said, most days it is just me and Evelyn. And on the days that I do have a nurse to help me, we usually have to get to an appointment (Evelyn often has 2–3 specialist appointments each week), and a nurse is required to sit in the backseat when we travel.
Those days when it is just me at home though, specifically those early days when we were newly home from the NICU, were incredibly difficult. On the one hand I had people telling me how happy and lucky I must feel to finally bring home my baby, and on the other hand, I felt abandoned from the support, community, and routine that being in the hospital brought. Now I am the hospital. I am the mom, nurse, doctor, RT, therapist, manager, supply stocker and housekeeper. I often felt isolated and lonely, and disappointment in my lack of involvement with my older child. But eventually, we settled into it. We created some routines and got more and more used to our “new normal”. My in-laws support me on a daily basis with caring for my son, and as Evelyn becomes less critical and older, we all can enjoy each other so much better.
I think transitioning from hospital life to home life has been a constant thing for us though. Likely because coming home from the NICU was only just one discharge, out of almost a dozen over the course of a year. Each time we come home from the hospital, whether from a couple of days or many weeks, our perspective shifts and her care needs are slightly different. There’s more grief in our hearts to carry and we adapt all over again to our ever-changing routines and mindsets.
What helps you wind down, relax, or clear your mind?
I TRY practicing yoga once a day. But I have yet to go a full week where that actually happens each day. I often get ten minutes in and an alarm will go off in Evelyn’s room, or I remember I forgot to put wet laundry in the dryer! But I still come back to it throughout the week. Moving my body and focusing on the breath is a healing, strengthening process for me.
The best, most consistent way I’ve found to wind down is by putting my thoughts into words. Whether it is in a public post that I share on my own social media channels or private journaling that I do, writing has helped me process my own feelings. I’m also really grateful to have these memories (even the difficult ones) accessible for me to look back on.
I’m curious, with all the medical equipment you use for Evelyn, does your home feel a bit like an ICU room? If so, have you taken any steps to make your house feel more like a home?
I’ve been conscious of this from the beginning, and I make adjustments regularly so our home does not feel like a hospital. There is a lot of equipment we can’t escape, namely her suction machine and feeding pump. Our floors seem to be littered with suction catheters and syringes (both because of their frequent use and because she enjoys them as toys!) Home is for healing, growth, and family bonding. And for someone who spends so much time in a hospital, I want Evelyn to know that there is a genuine difference between home and hospital.
While she was in the hospital for a long stint this past spring, I took to creating a new nursery space for her. We previously had her sleeping in the living room, which was an ideal set up given her fragile state and lack of mobility at the time. But I wanted her to have a fresh start when she came home from the ICU this year, a space just for her, and a living room that felt homier and inspiring for developmental growth. There are so many supplies that Evelyn’s needs require, from her Emergency Trach kit, a bagger, to gauze and syringes and meds. I keep out the items that are used the most frequently on a cart by her crib and put the rest in decorative containers or organized clearly in her dresser. Where most baby girls have drawers full of pretty dresses and shoes, hers mostly holds all these medical items. She hasn’t had time for parties anyway, and she always pulls shoes off her feet! There’s a desk in her room for her nurses to do their charting and notes, and binders organized with all of Evelyn’s specialists’ notes, supply order forms, and details from each of her ICU admittances.
It’s not perfect. Our home certainly doesn’t reflect an average home with young kids and babies. But I think we’ve found a good balance.
What are some things that have given you hope, or anything that has been life-giving on your journey as a caregiver?
Generosity from our community! The number of meals that we had at our doorstep after a long day in the hospital. We’ve received so many gifts, care packages, Starbucks cards, and gas vouchers. Each act of generosity seemed to come at just the right moment, just as we needed it, and it has touched us greatly! There has been no act or note or prayer left unnoticed or unneeded. I’m certain I’ll never be able to properly thank each person for their contribution to our journey.
On a more intimate level, we gain hope from following other people’s journeys on various social media channels. There are a lot of us “medically complex” moms, but not so many in any one city. But social media has allowed us to share, encourage, and offer hope to each other, from cities or even countries apart. Following others that are currently walking similar paths, or some who are perhaps a few steps ahead and have walked through the fire already continually gives me hope and strength.
Also, my husband. I couldn’t do any of this without him. And I know he would say the same of me. Having a partner throughout this, someone else who “gets it” and shares in each grief and celebration, setback and overcoming, has been the most life-giving.
– Laesa Kim, Springible Contributor