Hi my darlings thank you to all my readers. I’m glad I can be open and honest on here. I appreciate every single one of you.
I suppose you’re all wondering what happened next. I had no idea my son was struggling to breathe. All I knew is that the hospital checked him over when he was born – we were in hospital for 2 weeks. How could anything so big be wrong? It turns out part of the syndrome is having a narrow airway. The stents where 7cm long into Oakley’s nose holding his airways open. I had to use a suction machine to keep them clean. The nurse said they can get blocked very easily by secretions so it was important to keep them clean so he could breathe. I felt like the pressure was on as they were on size 3.5 width which were very small.
After Oakley got rushed into hospital we had to stay in for another 2 weeks, I needed suction training and he needed close monitoring. This is when I realised, he was constantly attached to a machine to tell me if his oxygen levels were dropping. They said I needed to take this machine home. At this point I thought WOW this is a lot of equipment. I had no clue what was coming over the next months with even more equipment!
Trying to balance the 3 children, mum guilt, trauma from my birth and a poorly baby, I still don’t know how I did it. I was in auto pilot, I had no time to feel, I had no time to think. My family were very supportive but they lived 8 hours away so it was difficult. Oakley’s face was covered in tape to hold the stents and the NG feeding tube in place. I couldn’t see my babies face properly.
My Instagram and phone were still going wild. People had made assumptions of what was wrong with my baby, I had trolls saying I was embarrassed of my son. This wasn’t the case I still didn’t know why my son was so poorly. I knew I would be inundated with messages and I had no answers, I struggled a lot. Myself and Oakley’s dad were passing each other, one of us was in the hospital, one would be with the 3 children, while both trying to work. It was becoming impossible. I don’t think I have ever been so lonely and confused in my whole life. Two weeks went by, the training for Oakley’s stent was a success and we were allowed home. I had to sit Siennah down and explain to her Oakley needed these to breathe but I didn’t want to worry her.
All of my children have always settled with breast feeding even as a comfort. Oakley would cry most of the time and I couldn’t comfort him, I felt like I was failing. His milk got changed and they told me to see how he goes. He would have the milk down the NG tube then throw up about 20 mins later, then I wouldn’t know what to do. I hadn’t done this before with a feeding tube. This went on for months, the sickness and screaming. I kept taking him to the Doctors but they said it was reflux and to try Gaviscon which did nothing for Oakley. I wondered to myself is there something really serious going on that the Doctors are not seeing.
Things at home weren’t great. Oakley couldn’t get put down as he was sobbing a lot. I couldn’t put him in a baby carrier as his stent could come out if he knocked it. I remember one Sunday trying to cook a roast dinner while holding Oakley and trying to entertain the children, it was hard going. Surely things couldn’t get worse? I found myself taking a step back from my friends and family who hadn’t seen what was wrong with Oakley as I didn’t want sympathy and questions, I was in a dark place.
One evening the boys and Siennah were in bed, we were trying to bath Oakley and settle him. His stent fell out, my heart fell out my ARSE. Will he stop breathing? I rang A and E they said bring him NOW. His sats started to drop (his oxygen levels), they put him on oxygen and waited for a consultant. I thought this couldn’t get any worse, surely they could just put it back in?
Siennah was sobbing at home, scared and worried that her mummy is going to be in hospital for a long time and if Oakley was going to be ok. It was hard for her to deal with and the guilt was eating me alive.
They managed to get the stent back in but there was blood all over him. It was shocking and heart breaking. They kept Oakley in overnight to monitor him. The next day we went home and I felt so relieved but anxious it would happen again.
We were trying to get on with our family life however it wasn’t going right. We couldn’t take the children out far as we were worried people would look and wonder what’s going on. Unless you are in this life you wouldn’t understand. Time was passing and the first appointment was approaching for Liverpool hospital (they deal with Oakley’s head surgery). Alder Hey are specialists in Apert syndrome. I got the train with Oakley on my own to Liverpool from Newcastle, I hadn’t taken him far from home before let alone on my own. The anxiety I had the night before was terrible, and I was in for shock when I got there.
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