Today has been the longest day, but I'll backtrack first for a while.
As Petra put in the post for me, Louise went downhill pretty rapidly last weekend and on Monday we got an appointment for the cardiologist, he'd fit us in at the end of his clinic. I brought a bag with me but didn't really expect to be staying and as a result didn't make much of me or Louise saying goodbye to the rest of the children, in fact I think the last thing I called was "make sure you hoover those stairs by the time I get back!!" Well the doctor didn't even have to do the echo-cardiograph to decide to admit her..her respiration rate was 120, that's 20 in 10 seconds-try it. The scan confirmed that the pressure on her lungs needed correcting. He rang the ward straight away and said he'd mind Louise while I went to the car to collect my bag. By the time I returned about 5 minutes later he'd already telephoned the surgeon to schedule Louise's surgery, he came up to the ward himself to make sure she'd get a bed. I was really taken aback as up till then everything seemed to be plain sailing and maybe since Louise's problems are all inside her body (apart from her facial mark) maybe I'd convinced myself that there was actually nothing wrong with her at all. An operation at 5 weeks was in the dim and distant future. My plan had been to get her established and nice and sturdy for surgery. Now here I was sitting outside the ward waiting with an 11 day old baby facing imminent major surgery. We'd thought shed been getting that chubby baby look but it was actually a bit of odema from the deterioration. (You can notice it in the photo of her in her pink blanket)
Overnight Louise was given diuretics which thankfully settled her breathing but also required me to change all her clothes, blankets and sheets in the middle of the night! Several saturated nappies and a day or two later it transpired that far from becoming a chubby baby, she's in fact weighing almost a pound less than her birth weight. She's now so small and thin like a little tortoise (except prettier!) On Tuesday the team told us the baby would have surgery on Thursday so Wednesday was a flurry of activity. Louise had bloods taken, antiseptic put up her nose several times (to prevent infection being carried down with the nasal tubes) , weighed, a cannula put in her hand for the lines etc etc and I was visited by registrars, anesthetists, chaplain, cardiac psychologist, specialist nurse, and surprisingly..the dental team who were visiting anyway not in connection to surgery. I joked that Louise has no teeth..I'm sure they never heard that one before! They told me we've to contact them as soon as her teeth appear as dental care is of vital importance for cardiac children. The surgeon's registrar called in and told me the surgeon would be coming round in about half an hour and he wanted John to be there too. I told him John was working but he said to tell him to come up, so I had to ring John to leave his patients and come on up. I didn't like the idea that he wanted John there too as it made me think he'd be explaining the risks of the procedure and all that could go wrong. When he came, though he inspired nothing but confidence in him. I'd already heard he's a pioneering surgeon who used to fly children to America and do this procedure on them there before it was done in Ireland. Explaining the possible complications, he told us he'd never come across any but presumed that in theory there could be some, as in any operation. That was music to my ears I can tell you.
The rest of the day and the next morning were difficult for me. I settled Louise down at about midnight and the nurse told me to set my phone alarm for 3.30 am as the baby needed to fast from 4am. Unfortunately she woke at 2.45 and had a feed a bit earlier than hoped. I found that feed very emotional as I knew it would be the last time she'd suckle for a long time. I lingered as long as possible before settling her back in her cot. Because she'd fed early, Louise woke again at 5 and of course I couldn't feed her. By 6am she just wasn't fooled by soothers or knuckles and from then until surgery I felt so sorry for her, she just wanted a feed and I wasn't giving it to her. I kept apologising to her and in my heart I apologised to her for making her wrong. I know of course none of this is my fault but that's what I felt when she looked at me so trustingly with her beautiful huge eyes.
Carrying our little baby to the operating theatre was an unbelievably surreal experience. The whole area is a new addition to the hospital and it's like entering a vortex..it's a bit like a nuclear power plant. Doors open into deeper and deeper areas of space-like rooms, gowned personnel going here and there with purpose. Hand sterilisers everywhere and everything highly polished and clean..and there were John and Louise and Me. I had this sense of unreality..what on earth was I doing here? Eventually we reached what appeared to be the heart of this amazing place and were met by the team of anesthetists. The consultant explained what he'd be doing then brought us into the room where I held Louise while he inserted a number of drugs through her cannula. He has these gentle eyes that really look at you while he's talking and he was doing that to Louise who was returning his gaze. Her eyes became heavy and glazed and a nurse said "she's asleep now, Mummy" and gently took her from me. I turned to leave and the consultant reminded me to give the baby a little kiss! John hadn't needed to be reminded! That was so difficult. I left the room with a heavy heart and a wet face.
John and I returned home during while the surgery was taking place ad we felt the other children could do with a bit of parental company and it would pass the time better. As we were driving home, this song came on the radio. I cried my eyes out and posted it on Facebook as soon as I got home. A message to her surgeons...Baby she's adorable...Handle her with care...
We sat by the open incubator until it was time to go and went home relieved that that day was over. I went to bed closed my eyes and opened them a second later to discover it was 8.45 next morning!!
I was expecting today to be a lot easier, I was wrong. I actually found today harder than yesterday. Maybe my expectations were too high and I thought Louise would be like an older person post op but I hadn't realised that neonates are not like adults when it comes to these things. I wasn't prepared for the fact that resuming breathing by herself isn't a simple matter of allowing the anaesthetic to wear off but rather a balancing act between pain relief and breathing suppressant. Blood saturation levels fluctuating and high high intensity one to one nursing care. I've found the day extremely tiring, emotional and draining and I just hope tomorrow will be better. When my sister put in her post we'd be walking with Jesus this Good Friday I was thinking that was nice but it'd be all over by Good Friday. She was right, I was wrong. But Hey..Sunday IS Easter.
This is the hardest thing I've ever lived through but I wouldn't swop my position for anyone else's in the world..if this is what it takes to be Louise's mother I take it with open arms. Of course I'd prefer she didn't have all these problems but that's what she has and I'm so honoured to be the one who has her. I'm overwhelmed by what I feel for this little child..we love her.