Oldest and Youngest

Grandma, Great Grandma and the boys
sporting their convict suits

Very nice day today. Grandma and Grandpa Cleaver and Great Grandma were in the area for an 80th birthday party of one of Great Grandma's friends. It was the first time that my Dad had seen Daniel and the first time Great Grandma had met either of them.

Nice to see the oldest generation with the youngest. 95 years between them.

Mum had made scones and tea loaf. Yum.

Home time

The last couple of weeks have consisted of Sarah heading over to Stoke Mandeville in the morning to tend to the boys, do their cares, feed them etc. I've headed over to the hospital in the evening to do the last care and pick up Sarah and then head home.

It's been a nice routine, but we'd always wanted them home. Well that time is neigh. However, we've had a couple of nights "bedding in" first. Our first night was Wednesday night. Bedding in, apparently, consists of being trapped in a tiny, windowless, super-heated dungeon. I fortunately only had to cope with it Wednesday and Thursday nights. Sarah had to cope with it for the entirety of Thursday day time, whilst I worked. So when I got to Stoke on Thursday evening to I found a very upset Sarah.

I wheeled the cot round to the ward. Asked the Staff there to look after the boys for twenty minutes whilst we went round to the canteen for a walk and a cup of tea. She was much better after a break.

We were originally told that we could leave on Thursday evening. But in the end with the baby resuscitation training and the paperwork it was too late to leave when the time came. So we decided to stay the second night and head off in the morning.

In the morning I took it upon myself to ensure that everything was sorted out. Confirming with all the nurses that everything had been done, we were OK to leave etc. Sometimes you have to be quite pro-active.

So the time came to pack them up and get them home.

Twins together again

We've done a lot of driving the last couple weeks. The round trip from High Wycombe, to Oxford, Stoke Mandeville and back to High Wycombe is 70 miles.

So it was excellent news to find out that Daniel was going to be headed to Stoke Mandeville this afternoon. We were over in Oxford this morning and watched him being packed up. We drove over to Stoke Mandeville after lunch and Daniel arrived in his space pod about 10 minutes after us. They'd slightly overcooked him in transit and he came out looking very red and grumpy.

But he'd made it back to be with his brother and it was great to see them to together again.

Wednesday: Fantastic news

Headed to work today not feeling great.

However about 11am this morning, Sarah sent me a fantastic video. Cheered me up no end. A video of Daniel breathing unaided.

He's off his ventilator and able to lie on his front. Obviously not recommended at home, due to cot death, but as the hospital can monitor him it's fine. He seems to settle well on his front.

Just such good news. Fantastic.

Tuesday: Ups and Downs

Work have been very good. We've agreed that I can head off early Monday, Wednesday and Friday's, I'll head to Stoke Mandeville on these days to see Alex. On Tuesday's and Thursday's I'm working from home (I'm lucky enough that my line of work allows this) , I'll head to Oxford on these days to see Daniel. Yesterday was great, I had a cuddle with Alex.

Today wasn't quite so good. I headed over to Oxford in the afternoon after finishing my work. Daniel was being looked after by an agency nurse. My first experience of an agency nurse during this whole chapter. I do have to say I didn't immediately like him. Very abrupt, seemed to be flirting with some of the other female NICU nurses. Didn't seem to have Daniel's best interests at heart. Difficult to put my finger on exactly what it was. I think he must have picked up on it as he was at pains to explain that he was from one of the most expensive agencies and that this meant that he was very good. I eventually warmed to him, but it took a couple of hours.

Daniel didn't look particularly well. He was really fighting the ventilator. He'd had that tube (or at least a tube) down his throat for the last 8 days. The body has a great power to adapt. His body was producing lots of mucus in an attempt to expel the foreign object. The mucus was entering the ventilator tube and partially blocking it. Agency explained that nothing will drive a baby more nuts, "It's like drowning". I was only there a couple of hours but in that time Daniel was drained with a vacuum tube three times. The awful slurping and gurgling sounds from the vacuum were only worsened by watching Daniel then try to cry. His face would curl up and his eyes wrinkle, only for the ventilator tube to prevent him. Silently crying. It was one of the most difficult things to watch.

I also had my first experience of merconium, for those of you who don't know it's a babies first poo, basically. It's produced during the formation of the feotus. It's not normal. I mean medically, biologically it's normal, perfectly normal, just not normal in what you what to have to deal with everyday. Think Marmite. Sticky, sticky, Marmite. Anyway this was actually great news. It means that Daniel's bowels have opened, stuff was passing through, despite his intestines having been monkeyed around with last week. He had been being fed 1ml an hour, now things were beginning to move this could be upped.

However when his feeds were upped, he vomited bile. So his feeds were suspended for six hours and then started again. This happened several times.

Generally, he was on the mend. But with the bile, the ventilator fighting, his tubes requiring frequent drainage and Daniel being quite to obviously upset, I left Oxford feeling quite despondent.

Saturday / Sunday: The Weekend

Well the weekends's just flown by. Sarah's Dad, Richard, came over to Oxford on Saturday morning and saw Daniel for the first time. He was doing very well, the ventilator although still supporting his breathing was being wound down. Daniel was getting stronger and you could see from the wave form on the ventilator graph he was trying to fight it, trying to breathe when he wanted to.

The drug doses were being wound down too. The morphine will remain until he comes off the ventilator. Having a tube shoved down the back of your throat, not being able to swallow properly must be quite painful.

Alexander James

We grabbed lunch in the same park as Friday. We then headed over to Stoke Mandeville to see Alex. Despite being the one that we'd been worried about during the pregnancy, due to his small size, he was doing particularly well. Of course thinking about this now, this makes sense. In nature, if something is struggling to survive it either dies or adapts to become stronger to overcome whatever is causing it to struggle. Alex had been surviving on less blood and despite being smaller than his brother was doing much better, crying strongly, awake, beautiful.

Sunday brought Grandma and Grandpa Cleaver over to Stoke Mandeville to met Alex for the first time. My Mum would stay for the next week to ferry Sarah between Home, Oxford and Stoke. I've to go back to work.

Friday: Oxford (Day 4), Operation Day

Family have been absolutely amazing. Sarah's Mum has been here for a couple of days quietly helping out and it's been an absolute god send. We really can't thank her enough. And when it all got a little bit much this morning and I started crying on the sofa, she just made herself scarce. Just the accumulated pressure of the last week really got on top of me. Good to get it out though.

So the plan for today was for Sarah to go to Stoke in the morning with Joan to see Alex. I would head straight over to John Radcliffe and spend as much time with Daniel before his operation in the afternoon. We weren't sure of the exact time as emergencies crop up all the time and could push Daniel down the queue. Daniel's condition was serious but at least he was stable.

John Radcliffe

As I was driving to Oxford I was listening to Desert Islands Discs on Radio 4. The subject was the royal photographer Arthur Edwards. His song selection for his self-induced hermitude included "Ruby" by the Kaiser Chiefs, the song playing whilst his grand daughter, Ruby, was being born, "It's all about you" by McFly and "Flowers in the Window" by Travis for equally sentimental reasons which I forget. But it was when his last song came on which was sung by two boys choirs, one each from Northern and Southern Ireland. It had been sung in front of the Queen a few years back and Arthur had never, in the last thirty years of photographing the royal family, seen the Queen so visibly moved. The song was Danny Boy. Sung by school children. Well that was just it. Fortunately I wasn't too far from Oxford by this point on the A40 and could wrestle the frog from my throat when I got out of the car. Honestly. Anyway it was a lovely day in Oxford, definitely shorts weather.

Space pod

So the plan for the afternoon was to wrap Daniel up in his space pod (similar to that which he was transported to John Radcliffe to on Monday night / Tuesday morning) and take him down to a paediatric operating theatre.

These things are amazing in and of themselves. Everything you need to move a sick child, portable ventilator, heated / humidified incubator, drug pumps at the top and monitoring equipment (heart rate, blood gases etc) I guess there must also be a massive battery somewhere, thinking about it. Or a massive extension lead ;)

Once operated on Daniel would come back to the Hot room for recovery. We'd been allocated a parents room at John Radcliffe so we'd be able to spend time with Daniel that evening and then be with him early in the morning as well tomorrow.

Once Sarah and Joan made it to Oxford from Stoke Mandeville, we agreed that during the operation we wanted to be outside. When the call came that Daniel was needed it was about lunchtime, just after. So we left the nurses to pack Daniel in the space pod and we headed to a park in front of the hospital buildings. It really was a beautiful day and we tried to forget what was going on. Joan headed in to Headington to grab some bits and Sarah and I dozed on a picnic rug.

We got the call at 6 ish that the operation had been successfully completed. The good news was that they didn't have to use a patch to cover the hernia. There was enough diaphragm available to stitch together.

When we got to see Daniel, not much had changed. He was obviously still on his ventilator, although this was still very lightly supporting his breathing. Despite everything he's still breathing well. We headed to the hospital canteen, ate chips and sandwiches (all that was left). Joan headed back to High Wycombe and Sarah and I retired to the the parents room. We were knackered.