Rich shares some tips and strategies that helped him take care of his mental while his daughter was on the neonatal unit.
“We can’t guarantee you will go home with a live baby.”
These words from the consultant a few minutes after Nancy was born at 24+5 weeks set the tone for a very stressful time at the NICU. The mixture of emotions experienced - the anxiety, anger, disappointment, frustration, sadness - were sometimes amplified by the “mood lighting” of the NICU, the symphony of beeps, and the fatigue and hunger due to us initially neglecting our own wellbeing.
Alongside using the fantastic nurses and practitioners as a means for support, we very quickly aimed to cope better.
Some of the strategies we found useful were:
Each evening we’d plan the next day, ensuring we included time for breaks from the NICU. We accepted that we may not do what we want to do at the specific times – but by writing the plan down, each task or activity most often got done at some point during the day.
We talked over a coffee each morning, allowing each other time to vent. We made a rule: “No interrupting each other and no judging what the other person says”. This helped us get everything off our chest without penalty.
We were at first reluctant to accept help from our immediate family, but their support through doing our laundry, cleaning and sometimes preparing food was invaluable – it allowed us to focus on supporting Nancy.
We insisted that the practitioners discussed what the plans were for Nancy the next day or week, which constantly reassured us.
Our family were vising many times a day because we had told them that the NICU had an “open visiting schedule”. Escorting them up to the ward regularly became stressful as we didn’t have as much time for ourselves. We then dictated the schedule that worked for us.
The dimmed lighting of the NICU can be draining, especially when tired and hungry. Sitting all day in one place also causes exhaustion and back ache. We got outside a few times a day to get some light and exercise. We walked around the hospital grounds, took the stairs, whatever we were capable of doing. We reminded ourselves to put such activities into each day, which helped pick up our mood.
We cooked our food in the slow cooker early in the morning. We’d cook enough for dinner that day and lunch the next day. This removed the demands of eating poorly and not having food ready.
We engaged with Family Integrated Care, made our “area” in the NICU our own by buying a memory box for all of Nancy’s milestones and by reading to Nancy each morning and night. This helped us normalise the very weird situation we were in, and connect with Nancy.
Uncertainty was the biggest cause of anxiety for us, so we asked questions all the time – writing them down in advance of the ward rounds.
Feeling the need to respond to family and friends can add to stress. We created a Whatsapp group and included everyone who messaged us to update all in one go. We then enjoyed reading all the lovely responses on the group.
These are some of the things we did to cope and we acknowledge they’re not for everyone, but they definitely helped to keep our wellbeing in check when caring for our beautiful girl.
After seven weeks in the NICU Nancy was moved to a HDU in another hospital for a further seven weeks, where she was allowed home without oxygen support late September 2017. The stress has continued of late though, where Nancy underwent a transcatheter closure of her PDA at Bristol Children’s Hospital. Thankfully, that operation went well and her breathing has improved considerably. She also has a hemangioma on her inner thigh that ulcerates regularly and affects her sleep – the longest she’s slept in one block since being home has been three hours. Again, the NHS has supported her treatment.
A few things have been reinforced throughout this experience. The first is how wonderful the NHS staff are. The system is not perfect, it can improve (with funding), but there is so much good being done by highly knowledgeable and competent staff that are overworked, underpaid, yet continuously pleasant and helpful. The second is how resilient our beautiful girl is. No matter the amount of bumps in the road, she continues to smile – which is something else we held on to throughout our time at the various hospitals.
If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.