Not all days are good, but there is good in every day.

‘I read everything I could find online about anything related. I lost so many hours doing this. There are no answers. Every baby is different.’

Dear Parent, 

Congratulations on your baby’s arrival. This is not what you dreamt about. This is not what you had planned for. But it is your story. And this is mine. 

I missed my baby shower. I was planning on having a home-birth, and had champagne and a baby outfit already bought. But, my son had other plans. 

That day was a blur. He had stopped moving, but I knew I’d be seen and sent home. He was breech. That’s ok, I could still push him out. But he wasn’t growing. He had to be born. Now. He was whisked to NICU. No skin to skin. No delayed cord clamping. No playlist. I had an emergency caesarean section. I couldn’t go to him, and my family were out of town. He was taken from me. My little connected soul. That broke me, and still lingers. Thank goodness for my midwife, who never left my side. 

I spent close to three months on the neonatal unit. It was Autumn, leading up to Christmas. I could tell you what colour the London eye would change next. I heard the sounds of the breast pump in my sleep, sometimes because I had actually fallen asleep with it still attached. Every day was filled with anxiety and joy. I couldn’t hold him for 3 days. Victor, who will always be my dream nurse, helped me to hold my son. Much to their downfall, as afterwards I tried everything possible to do it as often as I could. There were many amazing nurses, doctors, receptionists, cleaners, physiotherapists, radiographers, pharmacists etc. 

Jealousy played a part. I would see other babies leaving who had only spent hours with us. Why was I forced to be a new mum surrounded by strangers? Why did I have to leave my baby every night to sleep without my heartbeat? 

There were daily ward rounds, and when my son was really unwell, this would occur more often. But it was never enough. I always wanted to know more. What did that mean? When could we go home? What effect would this have on him? Was this all my fault? I read everything I could find online about anything related. I lost so many hours doing this. There are no answers. Every baby is different. Try to fight this temptation to Google. Instead, spend the time more wisely; write to them, read to them, keep a diary and take a break. 

Visitors. Your family and friends. They are shocked too. They want to know everything. Some just turn up, which can be overwhelming. This isn’t your usual postnatal period. You can’t just watch Netflix and breastfeed on a couch. I recommend nominating a team leader who can update your network and organise visiting (if this is possible), and who can also send you a message twice a day with reasonable questions. 

Talk. Take advantage of services like Bliss and psychological support on the unit (if available). Talk to your midwife, GP,  family, other parents. Join NICU hour on twitter. This is hard. There is no weakness in feeling angry, sad or scared. 

My son is going to school in September. Well, some form of it. During this weird time we find ourselves in with COVID-19, I’m scared and sad. But, I’m also so proud of how far my boy has come. I have so much unending love for NICU. They have such an amazing but difficult job. Be kind to them also. I send so much love to them and to all those parents who don’t get to take their baby home. I can’t begin to imagine this sadness. 

Not all days are good, but there is good in every day. I would repeat this to myself daily. I had much laughter amongst the sad and scary times. The nurses singing with me to my son, getting to tell an MP what I really thought during the Jr Doctor strike, bathing my son for the first time, hanging bunting made by my mum around his cot, taking him off the unit in the pram (to a scan …. but it was AMAZING). And the best day. The day I took him home. 2 days before Christmas. 

I hope you go home soon. Until then, and including when you do, know you’re not alone. You join a community of NICU parents. Reach out. Keep talking. Share your story.

From, Laura

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