Sunday, 18 March 2012

Campbell's Story...so far.

Our beautiful big boy is 13! He loves being a teenager and always has new ideas for great stuff he should be able to do now that he is a 'teenager'. Stuff like read rude jokes, watch 'Benny Hill', swear and drink beer!!! He is always terribly disappointed when these requests are rejected but he is beginning to cotton on. Campbell is funny. He loves jokes and comedy, and makes people laugh all the time. Sometimes not intentionally though- he is very quirky and says exactly what comes to mind, which is usually very funny or a bit embarrassing. We love him more than my words today will ever be able to express. He is our first born boy who fulfilled our dreams, but also taught us more about ourselves and human nature than we had ever hoped or expected.
We thought it was so sweet that our first baby was due on our 4th wedding anniversary- it felt significant and special. After a miscarriage and warnings about fertility issues we were terrified that having a family might be something we would never realise. For Eric and I, family was everything, we had always wanted children and had always dreamed of having a big family. Falling pregnant after a long period of horrible,  invasive treatments and surgery was so unbelievable and joyous. We were filled with fear that something might go wrong, but as my belly grew so did our confidence. 
The day Campbell arrived in the world was really hot. It nearly always is on that October long weekend. Photos of his birthday parties always show rosy cheeks and sweaty brows. I felt unwell all day. We did the final decorating in the nursery, even though we had not really thought about a cot, pram or car seat yet. I was so tired that I had to keep sitting on the floor to rest while Eric put up the wallpaper. As the day progressed so did my lethargy. We didn't think anything of it- it was hot and I was 25 weeks pregnant. It seemed to be quite natural that I was a bit tired and squeamish. 
It was election day and I remember feeling more and more unwell while John Howard was gaining ground. It really wasn't anything to do with John Howard :)
I decided to have a soak in the bath because I had pains in the stomach and it was still so hot. It was then that I became really uncomfortable. Not long after I got dressed Eric started to push me into the car. As completely stupid as it sounds I had not realised I was in labour until my waters broke in the car. I was only 25 weeks- how could I be in labour?
As they ran to fetch a wheelchair the contractions were thick and fast, and Eric was in a bit of a panic. He could not remember our health insurance details or even our address- in between contractions I was passing over all the necessary information. I can't help but wonder why they would have made me do all of that when I so obviously needed urgent medical attention. Poor Eric was such a wreck and was trying really hard to hold it together to support me- he did a very good job.
It dawned on me as I lay on the hospital bed with a nurse asking me not to push, that my baby was probably going to die. I hadn't even been to antenatal classes yet and knew nothing about the NICU or survival rates for babies born at 25 weeks. As they rushed my tiny little baby boy away, my doctor asked me what had happened. I had only seen him days before and all was well. I had hoped that he had the answer to that. He looked very concerned as he told me that my baby was very sick. I still remember my shock. Sick....Alive! 
I must have gone into pretty severe shock after that because as my doctor was yelling at the nurses to get more blankets on me I couldn't stop shaking and I could not get warm. The midwife who had ended up delivering the first half of Campbell (very much against her will I suspect) chatted with me as I recovered. It had taken a while for my doctor to arrive, and it was all pretty rushed. I am pretty sure she wasn't prepared for so much excitement when she started her shift that night. I am so lucky to say that the midwife is now one of my dearest friends and Campbell's godmother. She has supported us through many of the trials we have faced and is always there when we need her. We all love her dearly.
So we got a crash course in NICU protocol. Our handwashing technique was perfected fast and I could slip on one of those bunny printed hospital gowns like a pro. There are medical terms that will be forever imprinted in my brain and I can't believe that I no longer dream about beeping machines.
Nurses became my closest friends. I knew their children by name and could ask about their weekend sporting events on Monday mornings. I can recall the smell, the sounds, the coolness of the air and the heartbreaking sight of my precious boy fighting life. The initial shock of seeing such an incredibly tiny baby, with tiny little fingers and toes, will never leave me. It was very, very hard to connect with my tiny little boy. We couldn't do much else but stare at him. So that is what I did. I got there at 7am and stared at him until it was time to express milk. This became the highlight of the day in the first few weeks- it was the only pathetic thing I could do to look after my baby. I couldn't cuddle him, I couldn't change his nappy, I couldn't complain about having to get up in the middle of the night to feed him. I was exhausted because of the sleepless nights of fretting for my baby and the constant expressing to keep my milk supply up. This was not what I had signed up for at all! I was so embarrassed when I asked one of the nurses for one of his dirty cot sheets. I wasn't very assertive back then. I wanted something to take home that night that smelt like him- even though that smell was a bit clinical. I didn't have the luxury of that delicious, chubby baby smell. That is something that I inhale with vigour whenever I have a baby to hold- it is divine. Still, I treasured his little cot sheet and held it close when I struggled to find sleep at night.
After expressing and a cup of tea I went back to stare some more until it was eventually time to head home for a quick dinner before bringing Eric back for the evening visit....of staring. When we returned home for the night we did the ring around to our families who were waiting on every indication of progress. The prognosis was 50% chance of survival at that time, but Campbell kept slipping up and down the scale, often several times in one day.
Eric started dropping in before he started work in the mornings, as things were becoming less stable. One morning he came home to tell me that he had a quiet chat with Campbell and asked him to please hang in there. Campbell's blood pressure was very unstable and the staff were really starting to look worried. By the time I arrived at 7am- he was stable. I can't help but think of that and wonder if Campbell knew how badly we needed him to fight. We find it very hard to be too critical of his stubborn nature- I doubt he would be here without it. We have to be grateful for that fighting spirit, even though it regularly tests our patience. 
It was a true roller coaster ride from there on- a ride that we sometimes feel like we may never get off. I did get a bit sick of hearing that expression, as well as 'there will be 2 steps forward and 1 step back'.  Sometimes that was a big, fat lie. It wasn't always steps forwards and backwards in that order. Some days we just kept going backwards into a darkness I would rather not remember. There is never any private moments in the NICU and being taken into the isolation ward with the doctor was never a good sign. We would see the concerned faces go past the window, other parents always fret for the other babies too, we became like family in there. All of the things we were warned against, we faced. Campbell marched on through it all, but we were never completely sure if it would eventually become too much for him. We wouldn't have blamed him for giving up- it was cruel and so painful. Everyday I wished to carry his pain. I felt guilty that I couldn't. Every thoughtless comment tore through me and added to the mountain of guilt. Was it all my fault that he was here? What did I do wrong to put him here? How on earth can ever make it OK? That's a Mummy's job isn't it- to make it all better. All I could do was stare.
There is so much detail in the months that spread out ahead of us. There is so much medical stuff that now seems so irrelevant, even though it was so vital at the time. I longingly looked down through the windows from Bay 1 (for the really sick babies) to the light at the end of the tunnel- Bay 4! I really doubted we would ever get there. I fact we didn't. We left Bay 3 for the Grace ward at the Children's Hospital for a new phase in the hospital road trip. 
Campbell was lucky to have avoided the gut problems that keep threatening surgery. He avoided the surgery on his eyes that they were so sure he would need (even though he has a fairly significant visual impairment now) but the biggest threat of all continued to hover over us and refused to go away. The bleed that Campbell had suffered when he arrived in such a hurry had caused fluid to build up around his brain. The less serious surgeries were tried, but failed. It was going to have to be a shunt, on a baby who was still supposed to be safely inside my womb. This became a very rocky road and a very long stay in hospital. At least I could sleep by his side at the Children's Hospital and be a real Mummy. I gave him his regulated feeds around the clock and slipped away for a quick shower while he slept. I even got to have cuddles whenever I liked for some of that time. Unfortunately the shunt proved to be far more complicated than we had hoped. By the time was 12 months old he had 12 surgeries. Every time he went in we were told that he may not make it. Every surgery was dangerous. I understand that it can be hard to know what to say to a parent feeling that sort of fear, but seriously some people didn't seem to think it through. It is never helpful to tell someone that they would be better off without their baby. It is never helpful to jokingly tell a Mum that maybe it is her fault (NOT funny). It is never helpful to suggest that another baby will come along one day. It is also very unhelpful to laugh at a parent who is sick with worry, about how stupid they look staring at a TV which is turned off. (That woman was an absolute dill) I was hyper sensitive and probably a bit of a pain to be around. I think I deserved to be- I am still even tempted to apologise for saying that! I was so polite about everything then. I am so mad at myself for some of the things that happened but I thought it would have been rude to mention. The stupid nurse who pulled out Campbell's central line one night while I was getting him his bottle. When I went into the room she was holding him while the drip soaked into his sheets. The line was stitched into his chest!!! No wonder he was crying. The surgeon was furious when he came in the next morning. Me? Well I didn't want to be rude and cause a scene. Even though I was sick to the stomach with rage. I lost more weight than I know in the 12 months from Campbell's birth. I had never really weighed myself before but when my clothes started to hang off me I knew I had lost a lot. Every surgery had me rushing to the bathroom, repeatedly, until he was safe. One shunt revision was taking ages and we knew something had gone wrong, because we had waited through so many that we could time them. While we paced the floor thinking the worst, the surgeon had made a mistake and pushed the shunt tubing through Campbell's neck. His skin was still so fragile. That image still turns my stomach (sorry if it also turned yours...still, I can't help but apologise). Did we make a fuss and complain about the extra scars along his neck? Of course not. That doctor was keeping our son alive and that silly stuff up seemed pretty minor in the scheme of things. In hindsight we should have done more than say "thank goodness" every time something had to be patched up, but we were terrified- constantly!
Things have changed. I am quite prepared to speak my mind these days. I find that most of the time I can still be reasonably polite about it, but I sometimes don't care either way. Campbell is pretty good at standing up for himself but sometimes he needs an advocate to fight the battles along side him.
All of that seems like ancient history now, except that I remember all of that and a lot more. There could be chapters of this stuff, but really who would want to read it. It is a scary, sad story about a baby who had to face a very difficult and unfair start to life. Babies should know nothing but love and security. I can only hope that Campbell always knew how much he was loved. I have to believe that he did- it makes me feel better.
He is an amazing boy! There have been hardships along the way since his long awaited arrival to the home we went and bought for him while he was in hospital. That is another story and far less important than the fight he fought to survive. It is all about ability not disability when it comes to Campbell. My god he is stubborn!!
I am off to force my teenage son to give his Mum a big hug- he will do it with complaint, because that's what teenagers do. I love that and I love him.



4 comments:

  1. Thankyou. I can't believe what you went through. You and Eric are amazing people. The love you show your children is boundless and yet you still have more to give.

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  2. Thankyou Ruanne xxx You understand because you are a gorgeous Mum too. I am very lucky to have lovely people like you who appreciate Campbell's quirkiness!!

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  3. Sounds like Campbell and Ashlea have a lot in common then! I can totally relate to your love/hate relationship with the stubborn streak - so true that our precious kids wouldn't still be here without it!

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  4. How many weeks early were Ashlea and Audrey- I saw a photo on your blog of Audrey as a newborn and figure that they must have been somewhere around 25 weeks too.

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