A huge challenge being a new parent is this overwhelming responsibility you have for another human. A tiny little person who doesn't know how to look after themselves. This brand new life is in your control. But what happens when it's not? When you grow this teeny baby in your tummy for months on end, mentally prepare yourself for the responsibility and you suddenly aren't required? When you don't have a say on what happens to him? When you physically can't hold him, feed him or make a single choice about him. This is a struggle for many parents and I wholeheartedly felt it and still do.
I was recently talking to my friend who asked how I dealt with being in the NICU and decisions made about Oli that were out of my control. She asked me if I struggled with things being done to my baby that weren't my ideal. The answer was yes and no. When Oli was born I didn't feel like he was mine. In my mind he belonged to the hospital and the doctors and nurses. They knew what was best and I was purely a milk machine and visitor. As his condition started to improve and he was moved into the nursery my feelings began to change. As I gradually became able to hold him, do all his cares and breastfeed him our bond became stronger. I was his mum and he knew me! My heart skipped a beat every time he looked for me when he heard my voice. We were getting to know each other. As this bond grew I naturally became more protective over everything that happened to him.
It's an odd feeling being a nurse and a patient or parent. When you are wired with a nursing brain, it's absolutely impossible to switch off. I heard every damned thing on the ward, I got to know who didn't like who, who called in sick, who was a bitch, and who were the lesser experienced. Imagine how I felt when the bitch of the ward was looking after Oli and living up to her name?! Or when nurses with less experience than me were caring for my new baby?! I don't claim to be a nursing expert but I sure as hell know more than a new grad! I'm a very cool, calm, collected person but when my baby came into the mix I was truly pushed to the limit. I felt like I was playing tug a war with the control over my baby. As I lost control I became more and more frustrated. For example when I blasted the round of doctors who were umming and ahhhing over a date for surgery. "Late december or early jan? Maybe discharge with a stoma and re assess in a few months? No he won't put on enough weight, yes he will just teach mum and dad how to refeed" Two teams of doctors arguing over my baby! This wasn't just a date for me or a number. This was my LIFE and I wanted to get the fuck out of this hospital!
"Can someone PLEASE just make a decision and stick to it! Every day I'm hearing a different plan! Can you talk amongst yourselves and then come back to me and tell me instead of going back and forth here!"
Ok I even shocked myself there. Shit officially lost. Hehe But it worked...the next day the consultant came and told me if I had any questions to have him paged and that he would be in charge of Oli's management from here on in. I was relieved but embarrassed. Anyone who knows me knows I do not often lose my shit. I hate confrontation and arguments! What I hate worse than confrontation is when I want to say something but I just can't. Like the time when I arrived to Ol's cot in the NICU and the bitchy nurse was caring for him. There was a trolley next to his bed, all set up for what looked like an IV. I went to Oli and began to kiss and cuddle him. The nurse came over and pretty much pushed me out of the way - not saying anything mind you! Prepping him for an IV. It wasn't until she was pulling her trolley over and telling the doctor she was ready that I forced myself to speak up.
"Ahhh, what are we doing here?"
"Putting in a new IV"
"His other line is coming out"
"You can wait outside"
To say I was pissed off was an understatement. My blood was boiling! The golden rule that I learnt about as a grad in the paediatric setting is CONSENT! In fact in any nursing setting! Consent, consent, consent! This was so blurred in the NICU. Obviously I gave my consent for Oli's ops but all of the other treatments on a day to day basis I trusted were done with absolute necessity. This was a little different. He was almost out the door and into my care. I was literally pushed out of the way and wasn't even informed let alone asked if it was okay that my baby have an invasive procedure. I just wish I had stood up for myself and gone all nasty mum/nurse on her ass. Instead I sat outside with Ian and we were both so ticked off at the situation. I still feel guilty about that. That I let something happen to my baby that I wasn't okay with. It turned out the IV failed. If I had just said no then I would have saved some of Ol's pain and suffering? I think so.
It wasn't until recently that I felt my first triumph as a 'proper' mum. When I say proper mum I mean an assertive, sticking up for my baby, warrior mum! I rarely do it, In my mind I'm like a jelly fish. I have no spine and I let people tell me the way it's going to be. I'm passive aggressive...I tend to say okay to peoples faces then behind their backs say no I will not be doing that!! I have two beautiful friends who are true warrior mums! They know what they want for their babies and there is no way that anyone will change that. I think they will know who they are! They just happen to be two great midwives too. I often wish I was more like them. It's just so difficult having so many other people involved in Oli's life and care.
My brave moment came a few weeks ago. Oli was booked in for his annual review. A lung function test under sedation, a CT scan and a bronchoscopy under general anaesthetic. We arrived to the hospital bright and early for the lung function test. A few painful hours later - Oli fasting, starving and tired...the test was cancelled. At the time we were just happy to feed him and get out of there. It wasn't until the next night that I began to feel increasingly unsure about the other tests. The previous procedure Oli had stopped breathing quite a few times and woke up horribly. I was nervous. Complications including a pneumothorax or the night in ICU ran through my mind.
Oli was so tired from the excitement of visitors as I undressed him and gave him to mum to bath. When he started screaming and wouldn't sit in the bath I noticed he had the WORST nappy rash, welts covered his tiny bottom. I knew it had been red but didn't notice it was that bad! Oli was screaming and screaming, I couldn't find his dummy and he was soaked from his bath holding onto me for dear life. He was cranky with his teeth, sore bum and over tiredness. He was holding onto me so tight and sending me the 'protect me mummy' vibe. It might sound silly but thats exactly what it felt like. I sat in the dark in my room feeding when it hit me. I'm not taking him on Friday, we aren't going to the hospital.
It slapped me in the face. It was just so obvious, why didn't I realise this sooner? I have a choice! I was unsure what to do at first. I put Oli to bed and went out to my family. I said I don't know if I want to go ahead with these tests. In my heart I knew it. I just wanted some support! I slept on it and in the morning it was clear, my decision was final. I didn't have enough balls to ring and cancel though! That's what Ian is for! He called and cancelled and the doctor tried to reassure him everything would be fine...that the nappy rash, teething and unsettled-ness wouldn't affect the procedures. Of course they wouldn't....but they would affect our baby! He's not just a pair of lungs to investigate. He's our little boy, we are the one who cuddle him to sleep every night, who spend every waking moment with him.
It was the strangest feeling to be hit by this overwhelming urge to protect my baby. It was like all of a sudden a light bulb moment...I make the choices, it's not about the doctors. I trust them greatly but this time it just wasn't right. It didn't feel right, I trusted my instincts. It's so difficult without years of knowledge in CF I don't know what is wrong and right with his care. Talk about delayed cord clamping or induction with me and I'll question and refuse things but this CF business is a whole different ball game! This makes it hard to question treatments. All I do know is Oli, and I knew he wasn't right, I knew he needed me to step in and say no. It felt so empowering to say no. Maybe I'll be an assertive, 'proper' mum after all.
Have you experienced this funny feeling of your child not being 'yours' or feeling like you have no control? How do you deal with it?