Lorna's story - 31 weeker (co-founder of SuperDinky)

When my little one was born 9 weeks early I was in shock and immediately googled all the possible outcomes for him (spolier alert, this wasnt helpful!) I learnt babies born at his gestation have a 90% chance of survival but rather than be reasurred by this fact I (in my shocked hormonal and exhausted post labour state) convinced myself he would be in the other 10%. Why? because someone has to be. Even if he did survive, I convinced myself that he would have CP or brain bleeds or development delays which meant he never talked or walked.

All I succeeded in doing was scaring myself into a frozen state. Everyone kept telling me I was strong or brave or coping really well. In reality I was in shock and going through the motions of this strange type of early motherhood. Straight after he was born my son was taken to NICU on a trolley. I didnt get to touch him or hold him at all. I only saw him upside down, wrapped in a plastic bag to conserve body heat being wheeled away. My husband stayed with me, not knowing that he could have gone with the baby. When I met my son hours later I didnt know if he was mine. I hadn't really seen him at birth, hadnt seen a photo since and had to be shown which incubator he was in. It was not the 'golden hours' I had hoped for.

When I saw him his face was covered up by CPAP (breathing support), he had little medical sunglasses over his eyes and was lit a neon blue shade under the jaudice lights. One arm was taped to a splint to keep the IV line in place. He had so many monitoring wires and lines that I could barely see any baby. To say its hard to bond in these conditions is an unstatement. I was terrified.

 

I asked the nurses what the expectation was? She looked confused. I asked her how much time I should spend at the NICU? She said that most mums wanted to stay with their babies but I could whatever I felt comfortable with. I spent 12 hours a day at the hopsital but mainly I felt like a spare part. Unless I was pumping milk, which I was reminded often was the best thing I could do, I felt superflous.

 I have come to realise through therapy and also hearing more about other parents experience that firstly, I was in heavy shock and struggling to cope. Secondly, that the hopsital did not utilise many of the parent centered practices which are common elsewhere. The hospital was increadible at saving babies and helping them to thrive and for that I am eternally grateful. They did not use Vcreate or any similar app to update us on our baby when we were not there and any cares we wanted to do we had to really push to do. This isnt the norm and I hope that if you are reading this in NICU, you really feel at the core of your babies care. You are their parent. The NICU team are there to help you co-parent by doing the medical bits and supporting you to do everything else for your child.

 

After 4 long weeks in NICU which felt like 100 years, my son was discharged to our local hospital for SCBU. This is where suddenly the mood shifted and I was treated like a parent and empowered to do tube feeds etc.The staff were lovely and the room set up encouraged parents getting to know each other which was a welcome relief from my previous isolation. I met Beth and she taught me how to breastfeed my son. After I roomed in for a few days he came home.

 

The first year was a rough because he had reflux and was a terrible sleeper. He was re-admitted to hopsital several times in the first month which put me on edge with hypervigilance and health anxiety. After 9 months of waking every 2 hours for a feed and then having to hold him upright for 20 mins after so the milk didn't come stright back out, I had reached pure exhaustion and my mental health was low.

 

Thankfully everything improved after 9 months, he started smiling and interacting, he slept better and his relux stopped when he was eating more solid food. Finally I started to really enjoy motherhood.

 

The rate of development between 12 months old and 2 was phonomenal, he started the year so behind in everything (not crawling) and by the end of the year he was doing things which I could not have imagined he would ever do when he was tiny.

 

At the time of writing he is a running, climbing, talking, singing, dancing 3 year old who is mad for balance biking and paw patrol. The tiny broken-bird-looking baby who brought me such fear has grown up to bring me so much joy.

The irony of this is that had any of my initial fears come true, i'm positive that I would not have loved my child any less. Maybe I would have been thrust into the role of becoming a medical mama and that would have been a life I had not expected but I would have found the strength to become the best version of that mum that I could. Prematurity and NICU journeys seem invisible in society so when faced with them we often are so overwhelmed by the day to day medical trauma that we lose sight of two things;

 

 

If any of my future babies are premature or poorly at birth I've promised myself to open my heart and try to find joy from the start because I've tried the fear route and it just brings heartache.

 

My advice for other NICU parents is to find your tribe online. We are out there, I promise! Since starting SuperDinky with Beth and running the instagram account I've found great solidarity and support from the other NICU parents who have troden a similar path across different hospitals and faced different challenged but who all have an appreciation for the way this has deeply impacted them and their lives.

 

Being with other NICU parents, even in an online space gives you permission to feel all the feels. You dont have to hide the anxiety when you child gets a cold, or the PND or PTSD which affected you after discharge or the fear of having future babies. You can let your true feelings out, to people who get it and that in itself is healing.

 

A message I would like to pass to any other mums who felt enormous soul crushing guilt for having their child early/ being unable to carry to term/ birthing a poorly baby, its not your fault. Really. Its not your fault. This was not something you wished on your child nor was it something you could control. Self compassion is the only antidote for this crushing guilt. Now 3.5 years on, I tell myself "I did the best I was able. If I could have kept him in longer I would have. Its not my fault." Its not yours either.

 

If anyone is having struggles I encourage you to reach out to Bliss, or Pandas 24/7 text service or to me on instagram, my DMs are always open to NICU parents

 

Lorna

SuperDinky Co-founder

@SuperDinkyUK

xx