My inspiration and strength through Neonatal Intensive Care

My daughter Grace was born at just 28 weeks gestation due to servere preeclampsia. I was in total shock.

I had a quick passing glance at her as she was rushed away for treatment. My family arrived and my partner took them to the neonatal unit while I received cards of congratulations. I remember thinking, ‘no this isn’t right. She’s not meant to be here yet’.

Later, when I was stable enough, I was wheeled in my bed to see her. I was on my own, all of my family and my partner had left by that time. I recall the first time I saw her. So tiny, fragile and precious. It terrified me.

That night in my room I cried and cried. I had no sleep, just looked at the ceiling and I felt so alone. I was in a separate room but I could still hear babies crying and mothers getting up through the night to tend to their newborns. I still remember the helplessness, jealousy, guilt and loneliness to this day. My whole body ached for my baby but she couldn’t be with me.

I was taught how to express my milk for my baby and clutched onto the tiny amounts in test tubes as I took them to visit her. The walk from my room to hers was agony. I was so weak but I made myself go mutiple times with my ‘liquid gold’. I was shown how to express with the machine next to her incubater and I soon had my expressing equipment to take home and spent every morning getting up and ready and getting back to see her.

I pumped every 3 hours around the clock. That was my new purpose in life. I knew that being there and expressing was the only thing I could do for her at that time.

She spend 78 days in the neonatal unit. I sat by her bedspace alone everyday. The nurses taught me how to do her cares and change her nappy through all of the wires. I first held her at 4 weeks old. It didn’t happen very often, only if she was stable enough and they had the time to get her in and out of the incubater for me. And besides, she was so tiny I didnt really want to hold her much incase she got hurt or damaged her delicate skin.

My family came and visited when they could and my partner would come every night from work to be with us. She worked her way though the rooms, getting closer to home the stronger she got. I roomed in with her for the last few weeks as we worked on our breastfeeding and weight gain. Finally we were together the whole time, but now feeling isolated from the world I was still glad we we’re doing so well and we finally got to bring her home on oxygen after 3 months in hospital.

The first few weeks at home were full of hospital at home appointments and hospital checks.

She had her own calender for all of the appointments there were so many. Having her home on oxygen was stressful. Learning how to check, change and travel with the tanks was easy, it was not knowing her oxygen saturation and making sure her tubes were on enough to keep her safe through the night I found hard to deal with. I wouldn’t leave her at all while she was on oxygen and I asked for more unpaid leave from work. I had been developing mild anxiety symptoms for a while but when Grace was about 10 months old I found they ruining my life. I got diagnosed with a servere generalised anxiety disorder (GAD) which lead to me having panic attacks. I was really bad for several months with feeling sick to my stomach, feelings of doom and on edge, extreme dizziness, panic, hot flushes and palpitations that came without notice and completely incapacitated me. I was scared to leave the house incase I had an attack. I remember thinking that something was wrong with my health and I was going to die.

The doctor told me that my tests we’re all fine, I was physically well So when they told me it was my mental state causing all of my symtoms I broke down in tears. As much as my daughter means to me I can remember thinking that if I didn’t get any better I did not want to spend a life living like that. I told my partner that if I didn’t get any better then I wouldn’t want to be here anymore.

I am currently still off work sick, attending CBT sessions and taking medication for the anxiety, which has helped massively.

Grace needed ongoing care, spending time at Birmingham Children’s Hospital for an operation on her heart. It was emotionally hard anyway, but made worse by the worry and uncertainty of if I would have another attack so far from home.

I needed to be strong for my daughter and she has shown me what real strenght looks like and my inspiration. Every time that I become overwhelmed I think of her and what she has had to overcome. I am starting to enjoy my life again and I treasure every single day with my Grace. I wouldn’t  say that I am completely better but I know now how to ‘cope’ and I manage the anxiety a lot better.

Grace came off her oxygen at 14 months old, her operation was a success and she is now 19 months old and is doing just fine.

Thank you for reading my story.

🔸 With huge thanks to Amy for sharing her story through neonatal care and beyond so openly as part of Neonatal Mental Health Awareness Week | 15-22 April 2019

🔸 Please help Amy and us to raise awareness of the mental heath needs of families following neonatal intensive care. It’s easy, just use the twitter and Facebook buttons now to SHARE.

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