07 March 2016

The first week at home

It's been just over a week since we've been home from hospital and we're still trying to get our heads around this new routine. Seven weeks of going to and from the hospital, leaving Rohan behind every time became our new normal. We missed that babymoon time of not leaving the house, or even the bed for days just getting to know our new arrival. Yes we got to sleep uninterrupted in the night, well apart from me waking up to express in the middle of the night, but we spent long days at the hospital getting home to pick Theo up, and often taking him back to the hospital with us. It passed in a bit of a blur, but at the time was our new normal.

Now we have to learn a completely new normal, filled with less sleep and a lot more to organise. So even though Rohan was off oxygen and any breathing help for over a week before we left hospital, they felt that because of a sleep study that he had done, that he would need to be back on it for when we got home. This meant the nasal canulas went back in and we had air tanks delivered to our house. He also has a sats monitor to be attached to constantly, as well as a portable one for when we go out the house. He still has his NG feeding tube and with that comes all the syringes, tubes and testing equipment needed to feed him this way. We also try to feed him a little orally with a bottle, which he does take, but that means sterilising too. He is fed on a 3 hourly schedule which we have to work all our outings around. I am also still expressing breast milk, which I am supposed to do about 3 hourly also. He also has medication he needs twice a day. Add that all to various health professionals visiting us at home, deliveries of supplies and equipment, phone calls for appointments and visits back to hospital, it's fair to say we've not had a quiet week. On top of all that it's been our first week back at home properly, so we needed to do some serious sorting out, washing, food shopping and cleaning, as well as you know wanting to go places with our new baby, the school run and entertaining Theo. Oh and our boiler broke, and my car was due an MOT and service. 


 I honestly don't feel as though we've stopped, and I can't say we've been trying to be busy, it has just happened that way. But this is now our life. Luckily Rohan is such a relaxed baby who sleeps a fair amount meaning we can actually get a few things done, but it leaves little time for actually settling in and bonding properly as a family. We're still going through and processing the news about Rohans diagnosis, and on days like today I just feel it's all too much. I didn't sign up for any of this, and I wish more than anything that this wasn't our life. Because as nice as it is not to be in hospital, as it was all that I longed for, being home is hard.

Whilst we were in hospital we were surrounded by other sick children and people going through the same thing, we were in some sort of bubble where feeding tubes and beeping monitors were normal. Now that we are out in the real world we are surrounded by people living 'normal' lives with their healthy children. It's a constant reminder that Rohan is sick, and that the way we have to do things is different. Every parent you see with their new baby, breastfeeding, holding without tubes and wires, changing nappies without leg casts in the way is like a huge blow to the chest. I know I shouldn't be comparing our situation to other peoples, but in reality that's all I want. Just the normal process of adjusting to a new baby, without all this extra we have to contend with. And the fact is I know it doesn't end here. Even though some of the things can be fixed, like his feet, and hopefully eventually he can be stable and not on oxygen 24/7 and be off his feeding tube, this isn't the end. We don't know what Rohans needs are going to be as he grows up, but we know he is more than likely going to have additional needs. We don't know if he can hear properly, we don't know if he will be able to speak, we don't know when he will crawl or walk, or how well. We don't know if he will be able to feed himself, we don't know when he'll be able to potty train, we don't know if he will need heart surgery or any other surgery. It's all a massive unknown, and that isn't even going into any learning difficulties he is likely to have. 

It breaks my heart that I have to write all of this, like a big long list of worries and problems. That I can't even enjoy my baby without this massive feeling of wishing he was different. Then I feel guilty for feeling like that. But this is the way it is, this is our life and however much I just wish someone would turn around and say, hang on actually we made a mistake, he doesn't have this syndrome and he's perfectly fine, I know that's never ever going to happen. Sometimes I want to wake up in the morning and find it was all a dream, that we don't actually have to live this life in the end. 

I know he is unique, and special, and may give us things we never thought, but given the choice between that and a healthy child I know what I would pick. I feel guilty that Theo's life is going to be altered by however Rohan is going to be and his needs and I hope that he never feels as though we don't have time for him or his needs as we deal with all of this. And I feel guilty for looking at Rohan and seeing symptoms and a syndrome instead of my child. I feel guilty that I don't feel as strong a bond, that I wish he was different and I feel guilty for putting these thoughts down and sharing them with the world. Can you tell that I'm having a wobble? Tomorrow or in a few days perhaps I'll be able to look on the brightside again and be a little more positive, but this is how I feel right now. I didn't even intend to write all of this, but it just sort of came out as I tapped on the keyboard. I'm finding it hard to talk to people about it in real life, especially friends and family. It's easier to get it out this way, or to talk to people who know how some of it feels, so I'm sorry if I'm not replying to messages or wanting to chat. I know the love and support is there and for now that's enough.

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