Harry’s surgery to fit a Shunt, which would ultimately drain the fluid away from his brain and in so doing, keep him here with us, was scheduled for the 21st of December.
To be honest I think we were in shock, so although petrified, I don’t think I had really allowed myself to consider the enormity of the situation. The last thing the surgeon had said on the phone was, “don’t Google it“, so I had heeded the advice and deliberately, stayed away. I have to admit that I have since Googled hydrocephalus so many times that I only have to type ‘H’ into the search engine and it pops up. Don’t do this if you are a) feeling weepy or b) about to have your tea!
In the end, Harry was in such obvious distress that we ended up at St George’s a day early. My ‘Mother’s Gut’ felt that he was safer there and I was starting to feel out of my depth at home.
I honestly can’t remember the morning of the operation, or completing; the now familiar, yellow leaf paperwork. This is the document where you see the risks starkly spelt out in black and white. I however, do remember handing him over in the Operating Theatre. Even just typing now makes my blood run cold and my heart pound. He looked so tiny and helpless in the huge bed. As they put the mask on his face he struggled against it and his eyes went wide with fear-he looked to us to rescue him but all we could do was stroke his hand and stand and stare. I remember a kind theatre nurse, rubbing my back and saying “we’ll take good care of him”. “Please, oh please” was my pleading reply.
The day before we had brought him a soft, toy crocodile, which sprung back when you pulled it. We had put it next to his cot in the vein hope that it would give him some comfort. After we were ushered out of the room I looked down and it was still in my hand. We walked out of the theatre suite and all I could do was hold it. I walked, with tears streaming down my face into the stairwell grasping the crocodile in my hands. The strange thing is that it smelt so strongly of Harry. I just felt that if I could hold it really tightly he would come back to me in one piece. One thing I have noticed throughout all of this, is that most people are emotionally stunted. I can clearly remember sitting in the café, howling into my coffee and pulling the crocodile back and forth whilst the barista smiled widely and said “have a great day!”.
The waiting felt like slow torture. It is honestly no lie to say that every second ticked on forever. Eventually, I could take it no more and said to Matt that I wanted to sit on the yucky chairs outside the theatre. So we did. Its amazing what you do remember. We both fiddled with our phones. A distraction technique, I guess. Somebody had innocently posted a picture of their lunch. The disparity in that instant between her life and mine felt insurmountable. To this day I look at a smashed avocado, with sprinkling of black pepper (Waitrose of course) and shudder.
Eventually the surgeon appeared. “It has all gone well” he said. “You can see him now”. When we went into the recovery room, there was our baby. Covered in wires and so little, with a massive bandage on his head. I can’t remember what I said, but they said I could feed him if I held him horizontally (Shunts are fixed to allow certain pressures through. It can take time for the pressures in the head to re-set, post surgery. So the first 24-hours after his Shunt was fitted meant that Harry needed to remain horizontal). They handed him over to me and he fed. I was shaking so much that Matt had to hold us both and shout to someone to get me chair.
Once out of recovery they then pushed our beautiful, vulnerable and sick, baby, in his huge cot across the hospital, through the cold open and busy public areas, and up into a public lift. I can’t begin to tell you how this feels. In-fact, I now find this so hard that Matt always accompanies him out of surgery. I simply can not cope with other people being near him and the urge to protect means that I glare at everyone within a metre radius. A fat man, once sneezed in the lift when Harry was going down (for another surgery). To say, I wasn’t sympathic was an understatement.
We then returned to the ward, and after being told that Harry needed to be lifted horizontally, we were told that only I could stay overnight. I was horrified- “but I NEED MATT” was my wide eyed reply. Sorry, said the nurse – “only one parent”. I was still struggling to lift from the C-section. How on earth was I going to lift him properly and keep him completely horizontal? It just felt overwhelming.
Now my heart will always be loyal to the hospital because, with them and their expertise, we simply wouldn’t have Harry now. The neuro-team have always been kind and supportive, but we only see them during the day. The night-times, however are hell, there simply is not enough staff. Not our words- the nurses.
At night, there are so few staff, its frightening and extremely lonely. On his first night post-operation, Harry cried..and cried and then he cried some more. At one point I thought his wound was leaking. It was then that someone begrudgingly called a Registar arrived, she took one look at Harry and picked him up vertically. “What are you doing?!” I cried “you’re supposed to keep him horizontal” (trust me, with a C-section scar and no help, this had not been easy). She looked at me, apologetically and said “I’m sorry, I didn’t know that”.
I cried and called Matt. “I’m coming he said, I don’t care. I will sit outside the ward if I have to”. He must have been buzzing to be let in from about 5am and at 6:42 he walked onto the ward. It was, and still is, that I only feel that Harry is truly safe, when he is there. His practical and emotional support is what we both need. I understand that the NHS is broke so they can’t fund more night staff, so then for the Love of God, why can’t they let him stay??
Don’t get me wrong, it is obvious to me that everyone is trying their very best, with the resources they have. However, when you feel vulnerable and scared you need to be in an environment where you feel safe. You also need someone to be able to stop, give you time, and clearly explain things in a way that you understand. Note: Sleep deprived parents, anxiety and medical acronyms do not mix well!
We also found that the ward, although cleaned constantly, is completely dilapidated. There is one shower for the whole ward, which stinks and the showerhead is broken. To make matters worse, Harry’s overhead light didn’t work. This is serious when they need to be looking at him closely in the middle of the night. Apparently this had been broken for months! In my head I was thinking “if they can’t get the basics right, then how the bloody hell can they keep him alive?” (sadly, if you read on you will see the experience gets worse!).
It sounds so trite, but as the days wore on and we marched nearer to Christmas Day I started to panic. Not just about Harry. Lets be honest at 8 weeks old, you can take or leave the big red guy, but for Brad, Ellie and Lou too. I just wanted (needed) them and I know how much they wanted to be here with us. We had kept them away from the hospital as we had hoped that this would be Harry’s only surgery and therefore keeping them away would protect them. However, as the days wore on I could see Christmas with them slipping away and I could picture their heartbroken faces. This was made worse by the enforced jollity around us. Now I know that people genuinely mean well (and I probably sound like a total brat) but, FFS some people just don’t get it!
During this time so many strangers visited the ward, which although was meant with the best of intentions, to me, just felt intrusive. They gave Harry toys (I was worried about infection), sung carols (timed perfectly to wake him), played instruments (can you get an infection from trumpet saliva??) and generally kept reminding us that; hey it is Christmas, you should be with your family and having fun! I did feel sorry for a poor Intern, who had been sent from a local corporate to spread goodwill. He wasn’t at all prepared for Harry’s huge scar or snot and tears (I was also unwashed and clearly displaying signs of being a nursing mother!). He looked about 12 and obviously also he hadn’t read the memo that told him that 8 week old babies can’t eat chocolate!
It was, in all seriousness a truly private time and I really do think that people, albeit with the best of intentions, can’t possibly understand this. We were scared; scared for Harry, scared for us, scared for the future.
My last memory of that time, before busting out at 7pm on Christmas Eve, was one very posh Carol singer who clattered onto the ward and gathered us altogether to belt out, what was to be fair, a very tuneful rendition of Hark the Herald Angels. When it finished she proclaimed loudly to her fellow singers “well that WAS uplifting”….I just cried and thought about the risk of infection.