Nicholas Charles Johnson – This is Your Story
Every time I look at our baby I am amazed we got so lucky. It didn’t feel like that 51 weeks ago though. It was the most terrified I had ever been. Our story is probably similar to so many out there, but it is only reading other’s blogs on the Smallest Things that I have accepted our reactions as ‘normal’ in a very ‘not normal’ situation. I wanted to write this for Nicholas and it could be a book, with many chapters, with highs and lows, but this is in essence his story.
I had an ordinary pregnancy right up until 28 weeks when I had sudden bleeding and both of us were terrified I was miscarrying – we were so scared. After a trip to the hospital where they couldn’t locate a cause for the bleeding we were sent home and told to carry on as normal. I had another 3 bleeds over the next 3 days, each one resulting in a trip to the hospital and being sent home again until they realised I might have a low lying placenta. I was scanned and diagnosed with Placenta Previa and told I couldn’t go home until I had stopped bleeding, if at all. I was so frustrated – we have an older son who needed me and a job to sort out for maternity leave. I didn’t really understand the implications for our baby at that point.
I made it home twice before being sent back in again with more bleeding. 12 days later I felt strange with contracting pains but it didn’t feel like labour so I went to bed in an attempt to stay at home again for one more night. By 11.30pm I was woken up with pain and we rushed to hospital, both trying to convince each other I wasn’t in labour and it was a mistake as the pain intensified and on arrival they thought I was in labour. I was given the steroids for the lungs and injected with Magnesium which was horrible. After 15 hours of ‘contractions’ (which turned out to be the placenta abrupting) they decided we were too much at risk and our baby boy was delivered by emergency c-section weighing 3lb 4.5oz. At the time that seemed so very tiny but we learnt later that his weight was really good for being born at 30+5.
It is so hard remembering back to that day. Partly because I was so tired and drugged up. Partly because we were so scared. I couldn’t hold my baby, like I had my eldest, I couldn’t do skin to skin after he was born, I couldn’t be with him, my husband couldn’t be both with me and with him, we couldn’t be with our eldest explaining everything and we didn’t know it would be ok. We were in complete all consuming shock; both physically and emotionally.
He spent a day in ICU and then into HDU where he was for 12 days. The alarms were so scary. Every tiny movement was interpreted by us as something major and we kept preparing ourselves for the worst. After 9 long days we agreed on his name. There were so many unspoken conversations between my husband and I. We were both too scared to say things aloud. I was terrified he would die nameless – and it was then I realised I had also missed out on all the things you get to do in the last 10 weeks of pregnancy, such as leisurely playing around with names.
We both felt completely powerless. We tried so hard to learn the NICU language, to understand the alarms, to ask useful questions at the morning consultant meetings we insisted we were present for. There was literally nothing we could do to help and that felt so alien to us when we had been our eldest’s sole carers right from the start.
We remember the constant hand washing (the only outward sign of the only thing we could do to keep our tiny baby safe) and the resulting cracked painful hands which somehow seemed to me to be my way of feeling just a tiny bit of what Nicholas was with all the blood tests and lack of cuddles. I remember feeling numb as a way of protecting myself and the pain from my hands breaking through that numbness. Every twist and turn our story took I had to pick myself up again and find more strength and resilience.
We used to call the NICU every morning at 6am (having learnt the nurses shift patterns and when we could ensure the phone would be answered) to avoid any shock when we arrived at the unit. So every morning started with an adrenalin rush while we braced ourselves for the news of more braddies or reflux and we just hoped someone had cuddled him when we couldn’t.
While we sat with Nicholas tucked up inside our tops, every day and every evening, for 6 long weeks in LDU, watching the alarms go off, learning about reflux, about reading a preemies body language and development, and holes in heart valves, researching every scan and test so we could feel that bit involved in his care, and so much more, our family were doing our nesting; building furniture and washing his tiny clothes. We were so determined to get him home but so cautious it would be when he was ready. Leaving him every night was torture. We were both so torn – we needed to be at home for our eldest son but Nicholas needed us too. We felt guilty getting some sleep when we could be cuddling him and leaving him every night to go home and express breastmilk in the middle of the night without him is a pain only other NICU mums will understand.
But Nicholas is a stubborn little one and so determined and he made it home at 36 weeks. That was another scary step. We both felt so unqualified to take him home and were cautious in a way we hadn’t been before. We tried to read every sign and watch his every breath scared we might miss something. We slowly relaxed over the 2 weeks but unfortunately it didn’t last. 2 weeks later, I was cuddling him to sleep when I noticed strange breathing patterns and he became floppy and blue.
We called 999 and an ambulance rushed us to A&E. I can honestly say I have never been so scared.
The medical team were amazing, but couldn’t reassure us he would survive. Two weeks before he was even meant to be here, his swollen face was intubated and we sat with him again for a week, expressing milk and willing him to survive pneumonia and suspected meningitis.
Again, we got lucky and one week later he bounced back and we bought him home!
1 year later, after countless hospital check ups, weight gain concerns, tongue tie challenges and procedures, appointments and more weight checks, over reacting at every cold (one week I got the doctors to listen to his chest 4 times!) and assuming the worst with every change in breathing patterns; with the help of the amazing support team from the NICU we are celebrating our little boys first birthday – and, apart from his size, it’s like it never happened. And we are amazed, how lucky we are.
With special thanks to Jenny Johnson for sharing Nicholas’s story.
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