Life After ECMO
So the drama has all calmed down. The tubes are out you get to see his gorgeous pudgy face for the first time and your heart dares to soar with the hope it’s all over and he is coming home. A new type of adrenalin to live off for the next few days. Once again holding your breath for the words “you can take him home tomorrow”. Although it has been over seven weeks of pure and utter hell, emotional break downs, threats of Divorce (I’m still apologising!) everything will be okay.
Matthews journey home began with taking him off the ECMO treatment. This in itself could have its complications like seizures, and then hoping the blood would clot on his neck.
Then a brain scan to see the full extent of the damage.
A previous scan had showed a few dark spots. Walking that corridor again, questioning what if he doesn’t clot properly what happens then. You see the ECMO treatment includes an incision in his little chubby neck to insert tubes directly into his artery and vein. Squeamish? And yes he still has that scar that reminds me every summer when his little body turns a golden brown the scar on his neck stays nice and white, it waves at me as if to say “hey remember me”? He did have a few seizures but they were able to control them thank god. So now the big scan. At this stage I honest to god did not care what consequences that where to come, I just wanted him alive and at home with us. We were called into to see the scans that had been taken, any damage had repaired itself, a miracle. But to be honest I always believed there would be something underlying that would rear its ugly head somewhere down the line.
Matthew was brought home in style from Copenhagen, on his own propeller plane. Now something else to worry about! We flew home separately, the second time I had to hand him over to people, to strangers to bring my son home.
The most horrible feeling of emptiness I never ever want to feel again.
Our journey home is something I can never recall, like a lot of things that happened during and after the whole scenario. We got the call Matthew had landed safely and he was being brought to Holles Street. Matthew was still on oxygen at this point and would remain so for the next few weeks. After a long trip home, we went up to Holles Street that night to see him, I could not wait to see him. When we were brought into ICU which by the way I kept calling it UCI, the cinema group! There he was in an incubator. Now you have to remember Matthew was born 9lbs 8oz and a half, a big baby for a small person like me. So he looked like a chicken stuffed into a bag ready to go in the oven, and he was lying on his tummy. For some reason I just freaked begging them to take him out of there as he was squashed. It was so upsetting to see. But they explained that he would remain there for a few hours until he was stable again. A horribly distraught mother left the hospital that night so upset.
Next day I could not wait to get back to see him. I don’t remember what day it was or whether Peter or myself drove I don’t remember walking into the hospital that morning. The only thing I remember is that urgency to let him know I was there that I had not abandoned him although he was oblivious I was not. Peter returned to work someone had to pay the bills and life carried on for another four to five to weeks with me doing the day shift and Peter doing the night shift after work each day. I wonder to this day how we survived the pure tiredness and rearing our little girl Jessie at the same time. Automatic that’s how.
So back to those words “you can take Matthew home”. Family trip out to Holles Street Peter Jessie and myself all ready to complete our little family everything was fine now, we innocently thought. I remember sitting in the car on the way home two gorgeous bundles in the back the perfect gentleman’s family. But yet no sense of relief filled me yet. We get home and put Matthew in his little bouncer chair, again no relief. Back to normality; Peter back to work; and me a mother of two children. No sense of relief.
So if you were to ask me how was the first six months of Matthews life what was he like as a baby? With a guilty conscious I could not tell you a thing. Christmas that year he was two months old there is a photo of me holding the two of them, I am empty, hollow, unsure, unhappy and not sure about anything. I just ran on automatic, looked after the children, cooked dinners, went for walks, probably socialised I have no idea, because I cannot remember. Once Matthew came home we were on our own emotionally no help offered. I never considered I needed to be on anti-depressants or anything like that, I was already numb.
Trauma like this can and has torn couples and families apart.
Honestly we were the lucky ones it brought us closer, but I believe only because my husband carried the emotional burden for the first months until I could take over and share the load. For that I owe him everything and love him more than he can ever imagine.
Matthew was to return to Holles street and be monitored for the next three years every few months by a professor there. At six months he had a check-up. He was the centre of attention, the ECMO baby that survived against the odds. So that day we had the professor and student doctors and Matthew sat there, yes sitting up, reaching all his milestones, chatting away to them all. He grabbed the Professors Stet-scope we all laughed. The professor turned to me and gave me the second best news I had heard since Matthew was born, “Matthew is discharged from Holles Street, he is a healthy baby with no consequences of his ECMO”. Wow what a feeling. I just cried when we got outside, what a relief, I could breathe. I had been grieving the baby that was right in front of me all along.
The healing began I started running a few times a week lost some weight got fit and took on the rest of this emotional rollercoaster of been a Mother with my gloves finally back on, ready to kick ass once again. This was my anti-depressant. But it is only eight years later with some counselling and direction that I learned that my body and mind went into survival mode for six months. Weirdly even the hair on my legs and under my arms stopped growing, the only good vice of trauma! I could not process the trauma and over those six months each feeling was compartmentalised until a later date when eventually I would let go of that breath. Every year on the day of Matthews Birthday I would find somewhere safe and just sob. Each year I let go of a little bit of the pain I had felt and experienced. Each year it became a little less raw and each year I opened one of those little drawers and set it free. Each year as life went on and I became a mum again to a beautiful baby girl more of that pain dissolved. Matthew is very rarely ill and has a considerably high pain threshold and will only tell you after a few days he has a sore throat or his voice will go funny and I will ask him if he is unwell! He will never be a man flu sufferer, one less in the world!
But I do have to admit sitting outside his room over the years when he had a bad cough and each bark would hit me right in the chest, I would sit there quietly panicking, and begin to hold my breath again.
This year on the 25th of October Matthew will be nine years old, but this year I won’t cry; I won’t sob in secret and then text or ring my husband to tell him I am really sad. I won’t sit outside Smyths Toy store after buying his present crying like I lost him, because this year I am finally healed. I am grateful, I am happy and very content. I have three amazing kids that I would kill for (seriously) and a wonderful husband. Life is a celebration that we take for granted every day, sometimes it takes a tragedy to make us realise. Don’t let it go to waste.
P:S: I did cry writing this but happy tears!
