Please be aware there are some post-op photo's of Rosie further down this page which some may find uncomfortable to look at.
Monday September 19th 2011 saw Rosie finally get her slot at Alder Hey Children's Hospital, Liverpool, for the surgery required to repair her tiny heart. I really could write hundreds and hundreds of pages about this experience so to refrain from getting carried away I'm going to add to this page a little bit at a time.
The moment finally arrives...
It's important to know that the risk of death at the time of Rosie's op was as low as 3–5%, however, nothing quite prepares you for the moment you meet the surgeon pre-theatre and they tell you there is a chance your baby may not survive. These are facts they have to discuss with you and to their credit they spoke in a very matter of fact manner which is just what was needed at this point, I didn't need anything glossing over, I wanted to know facts. Whilst the stats are reassuringly low it didn't make the signing of the consent forms any easier. This was the moment all the waiting accelerated to reality for me personally.
Only one of us was allowed to take her in for the anaesthetic and we decided it would be me. I was absolutely determined to 'man up' and be strong for both my girls, 'keep it together Tom' I kept telling myself as I felt it was vital that Rosie saw me smiling when she went to sleep.
Her eyes gazed into mine, feeling safe in Daddy's arms, the bond I had with Rosie reached a whole new level at this moment and for a split second I had an urge to take her back home – after all she looked happy with no visible signs of heart problems, maybe they got it wrong and really she's fine?...
I reluctantly placed her on the bed and gave her my biggest smile whilst the tears streamed, quite an odd combination and probably not the most comforting of expressions for her to see! She looked at me as if to say, "I'm fine Daddy pull yourself together and let me get this over with". Then she closed her eyes...
I came back out to see Karen looking lost in the middle of the hospital corridor, we embraced for a moment with no idea at all what to do next, where do we go? We just hadn't thought about the waiting aspect at all.
Just prior to Rosie going in for surgery we had met the head surgeon who indicated the operation would take approximately five and a half hours. We ended up walking aimlessly, hand-in-hand, around the hospital grounds, then back to our accommodation, then to the canteen, then back to the room…constantly looking at the time – about an hour had passed, this was going to be a long day. I remember singing a song lyric in my head over and over, 'Beautiful girl, stay with me' which seemed to help me at the time, I'm not really sure why but in my own silly way I felt like I was communicating with her.
Eventually we settled down for a while in our room, kindly provided by Ronald McDonald House, Alder Hey – An independent Charity ran by the Alder Hey Family House Trust Ltd.
It was outside the entrance here that I saw a rose (the one on the blog header – it's not just there as a cliché!) it was as if it were a sign, okay so it wasn't, but at times like these you'll take anything for comfort and reassurance. Rosie was going to be fine – I just knew it.
Five and a half hours eventually passed and we went up to the ward she was admitted from to sit in the waiting room there, thinking any minute now...
A further hour and a half passed, totalling seven hours in surgery. I remember the last hour, every second felt like a minute, it was a very difficult period as we didn't know when we'd get the call from the Intensive Care Unit (ICU) to say we could see her. We didn't know if it was taking longer because of complications, we just had to sit tight.
When the call eventually came we raced up to to see her, the corridors seemed to treble in length and I felt like we were on a treadmill, trying to speed up but not going anywhere. As soon as we reached ICU I stood and took a deep breath, then we were escorted to her bedside.
I had never been in an intensive care unit before and really had no idea what to expect and I remember feeling like I'd stepped onto the set of some US hospital drama or something. There were (in my memory) about 15 nurses, frantically attaching things monitoring all sorts of different machines and drug levels, the surgeons chatting surgeon talk...I've since been informed there were only six people around her, four nurses and two surgeons! I felt so in the way though and was too scared to move – there was so much urgent activity and wires everywhere, machines bleeping.
Lay peacefully amongst all the mayhem was Rosie…I physically can't write down how I felt when I saw her, I've tried but its just a bit too distressing still, maybe I'll revisit this bit again another day in the future.
After the initial urgency, the surgeons and all but one nurse left her bedside and things settled down. We both sat and stared at Rosie in awe and I even remember feeling a sense of enormous pride in my daughter, so tiny, having come through the initial operation.
The nurse with us at the time explained in as simple terms as possible what each machine was doing, what the charts mean't etc. It goes without saying how much I respect the NHS but I really can't stress enough just how impressed I was with the work ethic of every nurse on the ICU – it wasn't simply a case of standing by Rosie's bed 'incase', they really put a full shift in, constantly busy, changing drugs, monitoring machines, liaising with doctors, filling out charts with 'military style' methodical precision, even a simple toilet break required a detailed de-briefing for the nurse offering the five minutes cover.
The longer we stayed by Rosie's bedside the easier and less daunting things became, something switched with me after the surgery and the initial shock of seeing her – rather than worry about everything (as I'm usually known for!) I became fascinated and somewhat engrossed in everything that was happening, I think it was my way of dealing with seeing all the tubes and scars on my baby girl. I dare say in many cases it's probably harder for people to imagine what we went through as parents than the actual reality of going through it, if that makes sense!
Rosie was on the ICU for a total of three days, in most cases it's 1–2 days, however during the second night we recieved a call to say they'd had to operate immediately to insert another drain as they'd discovered she had a 'pneumothorax' – a collapsed lung due to air being trapped between the lung and chest wall which prevents the lung from inflating fully. This was a little set back in terms of recovery time but we were assured it was very routine and no cause for major concern, although given our worn out state it didn't feel like that at the time.
So, on the fourth day post surgery, Rosie was finally given the green light to be moved from ICU and onto the ward. Whilst she wasn't completely out of the woods, it was a huge step in the right direction and the feeling of relief and excitement was unforgettable. As she was being moved along the corridors onto the ward I remember people looking confused as they saw Rosie on the bed, still connected to drainage tubes and wires then looking up to see Karen and I walking behind with the biggest smiles!
Once Rosie settled onto the ward and we had familiarised ourselves with her new environment my feeling of relief quickly turned back to one of slight worry. I'd become too accustomed to the 24hr bedside monitoring on ICU, it gave a lot of comfort knowing someone was watching her the entire time. The vibe on the ward was completely different, far more laid back and much less frantic and whilst eventually I realised this was a good sign, I did find it much harder to leave her in the evenings knowing she didn't have a nurse right at the end of her bed.
Before and after 7 hours of surgery...
One thing we weren't prepared for was how long we'd have to wait until we could hold her in our arms again. Five days in total... but that first cuddle, post surgery, was a moment I don't think either Karen and I will ever forget.