A few clouds in my heart this week. Two special kids members had to say their final goodbyes to their children and it's heartbreaking. A friend posted on facebook that his niece had passed away too this week. Weeks like this make me want to hug my kids tight and never let go. It also makes me so grateful that R is healthy and her condition now isn't life threatening but behind those thoughts are the flashbacks to when she was a baby and we were at real risk of losing her.
It's not often these days that I'm taken back to the night I thought R would never grow up but for some reason this past week has meant it didn't just creep up on me, it leapt out and soundly slapped me around the face - very hard.
R was born a few days early, everything was expected to be normal but she had other ideas. I was lucky enough to be able to have a water birth but she was a long time in arriving. I went into labour on the Saturday and she took until the early hours of the Tuesday morning to finally put in an appearance. She wasn't in any hurry to come out then and the midwife had to break my waters as she was coming out with the bag intact!
When she was lifted out of the water she cried but silently. It was surreal, like watching a baby cry but with the sound turned off. Her skin was a bit pale and her lips had an orange tinge but otherwise she seemed ok. The midwife said it was possible she had caught a cold and lost her voice but they'd keep an eye on her. She was sleepy and didn't feed that well, I had to keep waking her up and she tired easily. Wednesday morning the midwife woke me about 8am to say she'd slept all night! What a good baby! A few hours later that had moved on to "we're a bit concerned so we're putting this thing on her toe to measure her oxygen levels". I'm so glad I had no experience of a pulse ox machine before or I'd have been so panicked that her levels never went above 85% even asleep.
After so long in labour I was like a zombie at that point. When the senior midwife said the would need to transfer her to special care in Lancaster and did I want to go with her I said "no, I think I'll go home". Not sure what I was thinking at that point, not sure I was capable of thinking anything much to be honest.
Wednesday afternoon saw us meeting with the ENT consultant in special care in Lancaster, I did change my mind and was transferred with her, who would put a camera down her throat to see if they could see what the problem was. An hour later he was back to say she had webbed vocal cords and that she would need to be transferred to a specialist centre, he couldn't say where as he'd need to find someone who knew about this very rare condition, but to be prepared to be transferred anywhere in the UK the next day. We were relieved to find out that evening that we'd be going to the children's hospital in Manchester the next morning and not down to London as we had feared.
Thursday morning saw me being rushed to a midwife for a discharge so I could go with her then a wait around for the team to go with us. Not sure why I wasn't alarmed when they said we couldn't leave without the consultant and an aneasthatist in case R needed a tracheotomy performing on the way if she struggled. I think by now my brain had just gone into survival mode and emotions were just gone. I guess I know what it means when people say they were numb with shock. I did think it was odd at that point that we'd arrived the previous day in hospital transport with a driver, paramedic and midwife with R in a baby seat and no monitoring yet here we were with her in a travel incubator, lots of wire and machines, a midwife, driver, two paramedics, ENT consultant, aneasthatist and me!
We arrived at the childrens hospital on the worst possible day. Out the front were press and tv vans and far as you could see. Police and security on the doors and no one allowed in without ID. I hadn't heard at that point but several children on the cancer ward had been given feed that was contaminated with a virus or a bacterial infection and died. Worse still, as we were taken into ICU with R the curtains in the next bed were drawn one of the kids from that ward was in there and had just died. There I sat in a daze with tearful family and staff going in and out of the curtains wondering if I was having a terrible nightmare.
Shortly after R was put into a cot/incubator that looked like something from a science fiction film we me the wonderful Mr R, ENT consultant and amazing man who is still R's main man to this day. He explained so much about what needed to be done and that R would have to stay in ICU until surgery on Monday. She would need lazer surgery to remove the webbing but until that was done, and afterwards at first, she was at risk of losing her airway altogether and could need emergency surgery at any time to keep her breathing.
Over the weekend family came and went. My then sister in law came in and saw her and ran straight back out in tears. Still in a state of shock I was puzzled and couldn't work out what had upset her! I'm surprised more people didn't do the same with all the wires, machines and the almost constant beeping from her machines and others.
ICU at that time had no parents accommodation so I was found a bed in a room on another ward and got used to being a resident parent over the weekend. About 6am on the Monday morning a nurse came to get me to give R a final feed before she had surgery later that day and told me she had had to be moved from ICU to make way for an emergency and was now the heart ward opposite. R didn't want to wake for a feed and after a few sucks and much moaning from the sleepy one I gave up and went for more sleep.
R was transferred to the ENT ward mid morning so another ward for me to get lost in! She had a cubicle shared with another baby and a nurse between then so we just hung around there until she went to theatre after lunch. Mr R had been to talk to us again and I was happy that things seemed to be happening and it would all be straightforward! I think because the staff were so fantastic and explaining everything they were doing and why I felt at ease and not worried. Sometimes ignorance really is bliss!
A few hours later the worry did begin. Mr R came to see us after surgery to say that the webbing had been far more extensive than they thought and much thicker. He said if he'd known beforehand he wouldn't have used the lazer as he expected a lot of swelling and it was quite likely R would need a tracheotomy and they'd see how she went over night. She came back to the ward in an incubator with tubes and machines and wires again but now on oxygen and nebulizer to keep the swelling at bay. She was then pretty much watched over full time by a nurse while I sat in the corner dazed again.
Every couple of hours the nurse had to go off with another nurse and get adrenalin to go in the nebulizer to keep R breathing. That was fine until the night shift started! A full ward, several kids having had surgery that day and just three nurses and one auxilliary. About 11pm R's breathing got worse again so the nurse left to go and get her next dose. I'll remember the next few minutes for the rest of my life. R was laid there looking at me breathing hard when suddenly her eyes fixed on mind and all went quiet for a few seconds. Next minute alarms went off and she started to turn blue - that has to be the most terrifying moment of my life.
No one came so I went out of the cubicle and saw the other two staff down the bottom of the ward. Did I yell? Did I call out? No, I dashed down the ward as quietly as I could so I didn't wake the other kids!! I always thought I was calm and coped with emergencies but for some reason I wasn't registering that my baby was blue and not breathing, all I could think of was "don't wake the patients"!
Luckily they ran in and the other nurse came back and with a lot of help she started to breathe again. I actually don't remember much of the next hour apart from people going in and out and me being sat in the corner terrified. On duty docs came and went and by 12 they were waiting for a space in ICU again, this time R was the one going in and someone else was having to make way for her.
1am the nurse grabbed a pram from the corridor and I stood at the end of the ward with the door open ready. We made a mad dash through the hospital with R in the pram to ICU, me opening doors as quick as I could to get her there. Another moment that has always stuck in my head was Mr R following quickly behind us having clearly been called from his bed, tie wonky and hair all over the place.
3am R is in surgery having a tube inserted to put her on a ventilator.
and in comes E and S is being a pain so I'm logging off for now.
Well done if you got this far, I might get back later!
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