Eating Time: Writing while my son is in surgery

Is there a charity that gives holidays to families who have been having a shitty time? Cos I really need one. I’m not talking about make a wish, my son’s only wish is for milk and he’s granted that on a very regular basis. Plus up until now he’s been having a wonderful time being fawned over by dozens of doctors and nurses and surgeons and all the rest of it. But I could really do with getting away from it all. We’ve been in the hospitals for two weeks today and we will be in for maybe another two- maybe more but we’re secretly hoping for a little less. I have to stop myself from fantasising about picking him up and running away. Asking if we can get out of it somehow and disappearing. I keep dreaming of taking him to Italy, to Sorrento where me and his dad got engaged. I feel like we could be so happy there, so relaxed and actually start enjoying being a family. That’s not fair, we’ve had lots of very enjoyable family times so far. Thousands of totally joyful moments but there’s always been this sword of Damocles hanging over our heads.

My Labour was so bad that at the end the staff were comforting each other because of what they went through. The STAFF!!!! After a natural delivery, he was whisked away and I ended up being taken for 3 hours of surgery before even meeting him but in the end there was this incredible person. This technically huge but, in my arms, tiny baby who looked so perfect. So big and hearty and like his name suggests Hardy. I couldn’t stand up or feed him or change him but I could hold him all day long and it made everything seem ok. When I was holding him I felt his calm spirit calm me down. I was sure that, although I was struggling now, this little boy was going to help pull me through. Two days after he was born we found out he had a murmur. They told us it could be a number of harmless things or it could be a serious condition. But probably not… So My husband took him to have a heart scan while I lay in the hospital bed having a blood transfusion. When Matt brought him back to me he had to explain that it was the serious condition. My only question was “What’s his life expectancy”. Matt shot the answer back to me “The same. Its exactly the same.” People say all the time that they don’t know how we’re coping but what right have I not to cope when so many people don’t get to hear the words “it’s the same. It’s exactly the same.” Every time I feel sorry for myself I think of the people I know who have lost their children or lived their life knowing they will outlive their children and I feel nothing but gratitude for the boundless hope we have.

My next question to Matt was what happens now. The answer came later that afternoon when they took my baby away to the Neonatal intensive care unit. Most mothers could have been by his side the whole time but because I was needing such high levels of care where I was, I couldn’t go with him. You hear clichés like I feel empty without them or my world collapsed or lovesick- I hate clichés but really that is what it feels like. When they took him away it felt like they were ripping something from me. I can feel it now. It’s a wrenching pain in my abdomen. He used to live there, I used to be able to protect him and be with him all the time. It used to be impossible for us to be separated and now he can exist without me. That has a physical resonance!

Anyway, I’m side-tracking. So, back to the story. Theo was taken to the NICU and I was trying desperately to pretend I was better than I actually was because they wouldn’t allow me to visit him unless I could prove I wouldn’t faint. The midwife says I have to be able to walk around the ward for half an hour before I can go up there. HALF AN HOUR? I haven’t been out of my bed for 5 minutes. I must see him though so I accept the mission.  I am in agony from dozens of stitches I am desperately anaemic still (although we don’t know it yet but the transfusion didn’t help much and I still need another one) and I haven’t done any acting work since  Christmas so I’m out of the habit but I must see my baby.  I put on my most casual face and start walking around like its no big deal, like I’m enjoying the sensation of being out and about. Every time the midwife turns her back I wipe my ludicrously sweaty face and let out a whimper, every time she pops away for a minute I stumble quickly to the nearest chair and sit down. Sometimes I appear to be casually reading the notice board but really I am using it as an excuse to lean on the wall for dear life. When she asks me how I feel I say “yeah, really good” with a far too big smile and a slow blink as I try not loose consciousness. Eventually she lets me be wheeled up to see him where I promptly faint. It was worth it.

 The next few days go on in this way ; me battling for the energy to head over to my son, only to be overcome with exhaustion and have to go back to my bed. But when we were together it was wonderful. I never wanted him to go to long without my familiar voice and smell, I never wanted him to feel abandoned to the universe. The NICU was the most peaceful gentle place I have ever been. We were in a room with these delicate premature girls  and in the middle of that my 10lb 11ounce boy. One time in the peaceful night he did such a tremendous fart that the sound filled the room and startled the little girls. “who’s this bloke” they would have said, if they could have said something. “its my son, ladies,  and he takes after my side of the family” I would have replied.

On the third day, as I had yet another transfusion Matt and Theo met with the consultant from great Ormond Street and learned all about the condition and the operation that will fix it. The Operation he is having right now as I type. I know blogging while he is in the operation is a strange thing to do- please do not mistake it for a cavalier attitude- its just writing is a thing that seems to eat up time for me and we have to wait at least 6 hours. This blog is a time eater. Matt is eating up the time by sleeping but that has never been a talent of mine. We’re going to go out for food soon and a big glass of red wine.

The Op wasn’t supposed to be now. Some babies don’t have it until they are a year old but Theo’s condition is particularly extreme in one aspect. The condition is called Tetralogy of fallot so there are four things wrong with his heart. The two main things are a big hole between two chambers and a narrowing of the pulmonary artery and it is this that is particularly narrow in Theo’s case. They were hoping to be able to wait until the end of june but about 2 weeks ago we were admitted to hospital because his blood is too frequently dipping below acceptable levels of oxygenation. This is usually known as Blue spells but because my son is unique and special he wasn’t going blue in the way they expect. Thankfully an at home nurse caught it happening. We had a nursing team come to test his levels once a week and two weeks ago he measured at just 50 percent. We with heathy hearts sit at about 95 to 100. We got taken to Barnet hospital where we were monitored very closely until they were ready to have him at Great Ormond street for his operation. Which brings us up to right now, sitting in our hospital accommodation trying to eat up the time until we can see Theodore again.

Matt just told me he is “hungry like a bastard” so I’m going to post and run! There will be typo’s but if you’re going to judge me for that while my son is having open heart surgery then what kind of a person are you? EH? EHHHH?

I have a lot more to say about our experiences and a lot more time to eat up as he recovers, so I’ll post again soon.

Stay tuned for the next exciting instalment of THEODORE HARDY AND THE EPIC BATTLE OF THE HEART CONDITION