MOTHER'S HOSPITAL BAG: 5 often Overlooked self-care Essentials

When your child is awaiting surgery, or any procedure for that matter, everything else becomes irrelevant. While the entire focus of a hospitalization is on the child, it's easy to forget about yourself as a parent. I remember my hands bleeding from disinfectant. The hospital air made my lips crack, and my face felt like the skin was too tight.

My neglect of myself started as soon as the diagnosis sank in. I read so much about it all that by the time I gave birth, I would have probably been able to pass a paediatric cardiology exam with flying colours. But I did not read a single book on giving birth. I knew I should probably attend some prenatal classes, but instead, I set up meetings with paediatric medical staff and visited cardiac wards. In a way, that was helping myself - mentally. But looking back, I realize I should have also been kinder to my body. However, that didn't seem important at the time. I didn't care much about the state of my skin or discomfort; I didn't care much about whether I ate or, if I did, what food I chose... Everything I did for myself served only for me to survive, not to nurture. Nurturing was reserved for my baby, who was the one fighting for life.

However, this is not a post about everything I did wrong. It turns out, an airplane rule of putting the mask on yourself first makes a lot of sense in a hospital setting too: an "unconscious" parent is no good to a child.

And while I also remember how little I cared for advice back then, I still think it's important to encourage parents to do exactly what feels undoable.

To kickstart the topic of self-care, here's a list of a few little things that might not be the first to come to mind when packing a hospital bag for a parent, but could make the toughest times a tiny bit easier.

Diary / Journal

And a pen, of course. If you're anything like me, then a whole pouch of markers and ballpoint pens in a variety of colours.

Writing Emanuela's daily stats and comparing them after a while, when I felt most discouraged and when it seemed like her recovery was not progressing, assured me that things were moving in the right direction, albeit extremely slowly between all the ups and downs. Some of the pages served as a notebook to put down notes from my research, make a list of questions for doctors, and mark their answers to go back to them when my ability to think returned. This way I felt as part of my daughter's care team, included in the treatment process.

During the hospital stay, mothers and fathers grappled with the concept of not being good parents. Feelings of mastery decreased, and feelings of helplessness increased.
(conclusions of the study*: "Parental experiences of their infant’s hospital admission undergoing cardiac surgery")

As I struggled with my role as a first-time mom, writing a diary and journaling gave me the feeling of having at least some control when it seemed I had none.

Paper handled my anger, frustration, sadness, loneliness, and guilt, as well as Emanuela's victories. Today, the diary reveals some forgotten moments, and looking back, it sometimes makes us smile. It helps the healing process.

Hand Cream & Lip Balm

After using hand disinfectant for weeks, for every entry and exit from the Intensive Care Unit (ICU), and later from my baby's room, my knuckles were all dried out. The thought of leaving my baby alone to run to buy some hand and face cream, and a lip balm was absurd. If Emanuela can manage every invasion into her body, me complaining about dry skin was shameful, at least. It never occurred to me that firstly, she would not be left alone. Nurses were attending to her more than me, anyway. And secondly, the pharmacy where I could have gotten the moisturizer was on the ground floor of the hospital. It would have taken me literally less than five minutes. But that already felt like too much. So, I borrowed some from nurses, and eventually, someone from our "support team" brought what I needed. Still, as I was caring for myself, it felt like nonsense.

Research has shown that parents of children with more severe diagnoses are at high risk for psychological problems, particularly in the first weeks and months after their child's cardiac surgery. Approximately 30% of these parents showed symptoms of post-traumatic stress disorder. In addition, 30%–80% reported experiencing psychological distress, and another 25%–50% of these parents have reported clinically elevated symptoms of anxiety and/or depression.
(conclusions of the study: "Parental experiences of their infant’s hospital admission undergoing cardiac surgery")

Six years later, I know better. Applying moisturizing eye drops, and attending to dry skin and an exhausted body might just as well be the first step to ensuring a parent comes out of that hospital stronger to care for the child at home and face the challenges of a life different than imagined.

Coffee Mug

Depending on where you live and the hospital your child is admitted to, you will (or won't) have access to the basics. We started our medical journey in a place where I had to bring my own roll of toilet paper for a hospitalization... These days, however, I barely have to bring anything. Although, a pocket knife is always practical. It makes it easier to peel and cut fruit, for example.

Having a favourite coffee mug is both soothing and energizing. While our current hospital provides paper cups next to the coffee machine in the parents' corner in the hallway, I always find those too small for my needs after a sleep broken by the night action of the ward. And leaving my girl alone twice to go for a refill already feels selfish. That is the same reason why I always carry a big water bottle.

As I am not a big fan of instant coffee, I recently also made coffee and tea I like most as part of my hospital bag. This way, my rituals smell and taste the same wherever I am, and that makes it easier to handle just how very different they actually are within the hospital walls.

Pillow

Sleeping on chairs, bent, head resting on folded arms or, when the baby allows mom to move away for a step or two, sweating on those thin, plastic, wanna-be pillows is excruciating. Those were months that accumulated into years of discomfort for which I am still paying with back, shoulder, and neck pains. It took me a while to stop reducing the amount of hospital luggage at the expense of my comfort. Within our context of living without a village to help, far from our families, and with busy friends, I prefer packing more.

A good pillow not only enhances comfort but in my case also helps with the inevitable headache. Stress, fear, crying, and lack of fresh air take their toll. That's why I always carry around painkillers and rehydration powders. Oh, and sunglasses for moments I find to go out and soak in the natural light that always turns out to be too strong after days spent indoors.

A better quality inflatable travel pillow might save some packing space and could be used for back support, as well as to rest the head on it. When it comes to earplugs, to silence the beeping monitors and the ward's night action, it took time for me to muster the courage to start using them. Although the medical staff was in charge, I always feared I would miss something important and I preferred being woken up. Only years later, when I gained enough experience and confidence, did I realize it was okay to use them. When in doubt, however, I'd use only one and lay down on an "open ear".

After accompanying our daughter through multiple hospitals in different countries, I've learned what they all have in common - the room is always either too cold or too warm. Thus, a blanket and a pair of sleeping socks can never be in vain. Also, I found dressing in layers to be the most practical.

Token of Hope

Whether religious or not, it helps to have something visible and tangible close by the baby's bed - to keep hope alive. When facing a rollercoaster of emotions; when despair from the whole situation intertwines with the joy from the smallest progress, a token of hope to focus on or a conversation with a parent next door can provide mental rest.

Parents tried to adapt effectively to this situation by finding positive meaning in the process of coping (...) Some parents found meaning and spiritual connections in their circumstances. They were able to make sense of the situation. Parents felt their strength grew when they talked to other parents who had the same experiences. It helped them create some distance from their own emotions.
(conclusions of the study: "Parental experiences of their infant’s hospital admission undergoing cardiac surgery")

When we first received a diagnosis, during the early stage of my pregnancy, we lived in Lebanon. So, it was only natural for us to find an emotional refuge with Saint Charbel, known within the Catholic Church for his miracles. And we needed one. Or two. And got a few more.

Hoogen, A. van D. (2021). Parental experiences of their infant’s hospital admission undergoing cardiac surgery: A systematic review. Acta Paediatrica. [online]