An Update on Oliver.
A little update on our life with Oliver.
We thought this year was going to be our stable calm year. Last year was overwhelming. We lost all our income from covid wiping out the events industry. I lost my retail and event jobs. All Chris’ tours got cancelled. Chris had to start from scratch. We got pregnant. We were in isolation. Chris found new work. We nearly lost the deposit on our house. We managed to get our mortgage. We bought a house. We moved in whilst I was 36 weeks pregnant.
Then the most beautiful little boy came into our arms calmly and lovingly at home. It was the perfect end to a crazy year. Now we were to settle into our gorgeous baby bubble, our lovely new home and a life in which Chris worked locally.
For those first 6 weeks all seemed well. Oliver was a perfect little guy! He is so calm and lovely and I really got to enjoy those first few weeks unlike how hard it was with Harrison. He was so chill and happy to just be held, fed and slept. It was such an easy love for him. I could now see how that immediate bond can be developed between mother and child. He rarely cried but was super alert and strong. Then at the 6 week appointment my midwife told me to see a GP as his fontanelles seemed to be closing early. This is generally called craniosynostosis. With my brief research this was either a wait and see or an operation to open up the skull properly to allow growth. Pretty straight forward. No long term issues. I could manage these options.
We got referred on to a pediatrician after seeing the GP. This is where I got stabbed in the heart. He didn’t think it was craniosynostosis as the ridges were not defined as they normally would present with such a condition. Instead he diagnosed Ollie with Microcephaly. This means his head is not growing as it should be. His weight and length were measuring in the 25th percentile but his head was only in the 1st percentile. This could mean many things. Microcephaly itself isn’t the issue but the disease that causes it is. There is a small chance he simply has a small head. There is a much greater chance he has some kind of genetic issue or brain damage that has caused his brain to not grow at the rate it should. This could mean we need to prepare for developmental delays and for Ollie to have a much harder life than we had planned.
I wasn’t ready for this information. My perfect baby wasn’t so perfect anymore. I had no answers. I just had the knowledge that we need to prepare for something bad but it could take 6 weeks to know what we are dealing with and what our future with him will look like.
It could have been caused from an infection during pregnancy that I didn’t know I had, it can be caused from a stroke in the womb or possibly at some point he lacked sufficient oxygen for a long stint of time. Or it could be a rare genetic disease that we had no control over. I have just been questioning and overthinking every single thing I did or didn't do during pregnancy and birth. I feel like I am to blame. I was selfish and had coffee nearly everyday. Could that have affected it? I only drank organic juices or smoothies with Harrison and an entirely healthy diet. Why didn’t I do that with Ollie? I always thought how unhealthy many other women are in pregnancy and they are fine so I would be too. Maybe it was that time I had some deli meat or leftovers or a runny egg even though I know it’s not advised. Maybe I missed some pregnancy supplements for a few days or maybe I didn’t even notice he/I was sick. Maybe when I had those panic attacks he lost oxygen? Is that even possible? Maybe something happened during his labour but I was so flippant that I didn't pay enough attention? Did he lose oxygen in those first few days of life and I didn’t see it? I should've eaten better to give him the best start. I ate a lot of pastry. I wasn’t that hungry a lot of the time - what if I didn’t eat enough to fuel him? I really wanted a girl and cried so much those first few weeks finding out he was a boy… I said I didn’t want a boy. What if I manifested this for him? What if I was pathetic enough to care so much about his gender that I overrode having a healthy baby? I can’t say I did everything in my power to have a healthy baby so therefore I really blame myself.
If it’s genetic who is the carrier and what is the chance we could have another healthy baby? Is the family with 3 children now not an option? Will he require a lot of extra care that wouldn’t even allow us the capacity for a third child?
I spent so much time and energy preparing for a beautiful birth for him and a healing birth for me. But now it just seems stupid. I would happily sign up to a c-section if it meant this wasn’t going to happen. I feel like an idiot. I feel selfish and to blame for jeopardizing his life and how our future with him will look. I feel sick.
We have had an MRI, blood tests and hearing tests. We have one last vision test and then should have some results in the next month. So in the meantime my mind wanders. Some days I can go all day just feeling like everything is ok, everything will be ok. Then sometimes I see his head in proportion to his body and just fall apart. I am so angry I can’t do anything to help it grow. I can’t do anything to help him. I fall apart. I haven’t cried this much in such a long time. I have no hunger but force myself to eat so I can produce milk for the little guy. It’s been hard to talk and connect to Chris as we are both a bit of a mess. It’s hard to manage Harrison’s emotions and needs right now as it just all seems too hard and I can’t focus. I find it hard to talk openly about how hard it has been as it’s hard to explain to someone who hasn’t been through it. Because right now everything is ok. Why am I so upset about something I don’t even know is going to happen? The logical person in me says I need to remain calm and open and believe that everything is going to be fine. The other part of me is falling apart and just unable to function properly.
I want Oliver to know how much I love and adore him. I want to enjoy and remember this time while he is a perfectly normal baby with the chance that soon that might not be the case. I am so scared for him. I am scared for me. I don’t know if I have the strength to manage a special needs child. I never saw that for my future. I guess no one really does.
And then at the end of the day everything could be simply perfectly fine.
It’s a wild roller coaster.
This is how it feels.
Maybe you will understand after reading this too?
We are in the early days.
We will have an answer hopefully in the next few weeks.
It feels good to just release this all in the universe.
So please keep us in your thoughts xx