Hey everyone! In this blog I’m taking it back to when Oakley first came home with us. The first night at home was very hard for us as parents. I felt like a 1st time mum again. Having a child with additional needs is a totally different experience. I had to keep saying to myself ‘the doctors have checked him over he’s ok’ but my gut was telling me that he wasn’t ok.
A few days went by and my mum had to leave to go back to Brighton. I felt like my heart had broken again. My mum being up north with me was my safety blanket. My sister was born disabled and is doing amazing, she has 2 children of her own. My parents struggled and I remember my mum living in hospital for a long time. I lived with my aunty as my dad was playing professional football at the time. But I felt like my mum knew what she was doing and looking out for us. When it was time to say goodbye to her I sobbed for about an hour. Siennah was distraught, the house felt a bit empty as my mum was holding my family together. The atmosphere just wasn’t the same, I needed my mum.
A few days went by, I don’t think I actually went out the house. It was really hard, Oakley had a lot of equipment and was feeding every 2 hours. He was throwing up most of the feeds and was very unsettled. I honestly thought I don’t know what I’m doing wrong. This was my 4th baby. Why can’t I settle him? Why is he throwing up so much? So many questions. I turned to my community nurse and she changed Oakley’s milk. Every health professional that I came across I seemed to ask the same question too. Have you seen a baby with this condition before? The answer was no again and again. I started to realise how rare Apert syndrome really was.
The boys came down with colds, just a snotty nose and a cough. It was a really rough few days as most of us parents know when your child is poorly the days and nights are long. This was just a simple cold so we got Calpol, plug-ins and covered the boys in baby vicks.
One night I couldn’t sleep (a few days after my mum left), Oakley wouldn’t settle and was in a crib next to me. At this point he only had a NG tube in his nose to feed. I would have to hold the feeding syringe for 45 mins to gravity feed him. Then he would throw up and I would have to start the process again. This wasn’t normal to me, I was use to a baby latching on to my boob and feeding for a half hour then sleeping for 4 hours, I felt useless. Then he had a huge vomit, I changed him and he didn’t look right. I stripped him off and his belly was sucking in. He has a tongue tie which isn’t too bad but it was flipping up into his cleft. He wasn’t breathing properly. For a moment I thought he had the boys cold. I watched him for a few minutes and sent a video of him to my friend Sophie Standing who’s a midwife. She’s a friend of mine from Brighton who has been amazing to me with advice with all of my kids. She watched the video then told me to call an ambulance.
I phoned them straightaway and they stayed on the phone until they got to me. Everyone in the house was asleep, I felt so scared and anxious. They asked me on the phone about his medication history, I told them about the syndrome but they didn’t know much about it either. Within 15 minutes the ambulance got to me and rushed him to hospital. He went through A&E into a room, the doctor came from nowhere and put him on a sats monitor (which checked his oxygen levels). I think they were around the 70s mark, I called my mum and said this doesn’t look good, I don’t know what’s going on. My mum told me to calm down, I got so angry with her for leaving me. I look back and think I shouldn’t of but it was all because I was scared of how to cope with my baby when I had no clue about this syndrome.
The doctor came back out the room and told me he has to go to theatre NOW. I couldn’t understand it as they told me his first Surgery would be at six months and to enjoy my son. He wasn’t even a month old so I was telling them they must have it wrong. I had it in my head that his consultant said six months. I didn’t really know why he had to go to theatre but he went. I rang Aaron in tears he was so confused too. All I can say is we were both distraught, none of the kids have had any kind of surgery let alone an emergency one.
After a few hours the nurse took me to a ward, Oakley was still in theatre. They said to me he might end up in intensive care depending on how his operation goes. I sat in the ward room for a while on my own, I cried and cried I felt so exhausted and confused and I knew nothing.
A nurse came back and told me Oakley was in recovery and can come back to the ward, but I needed to speak to the two surgeons before I could go and get him. They came in and spoke to me, I couldn’t get any of my words out. They said Oakley couldn’t breathe he was struggling due to the narrowing of his airways. I just remember thinking what have you done to my son but I couldn’t speak. They explained Oakley would have tubes in each nostril to open his airways up which will be 7cm down. I couldn’t picture what they were taking about. I just said I need to see my son.
I walked down into recovery to get Oakley with the nurse, I broke down when I saw him. My son couldn’t breathe and needed an emergency operation. WTF! He had two large tubes in his nose and his Ng tube, I felt like I couldn’t see his face anymore. What have they done to him? But I knew he needed it to breathe.
We went back to the ward and I rang Sarah (I’ve mentioned her in previous blogs, she has a little boy with the same condition). I told her what happened and she said she went through this with her son. I felt so let down that I had been allowed to take Oakley home when he was born and they didn’t look into his breathing. Sarah explained to me a lot of children with Apert syndrome need help with breathing when they’re a lot younger. Some may have tracheostomies and some may have stents. It’s quite rare that they don’t need medical help to breathe, I was still SO angry.
This was just the start of our journey and there’s a lot more to come. I blamed myself for weeks for not calling the ambulance straight away. I actually had the doctor say to me “I don’t know what you would of woken up to if he didn’t come in to hospital” those words haven’t left me.
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