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.

Thursday: Oxford (Day 3)

Overnight where the paralysis drug had worn off Daniel had tried to breathe more strongly and brought more intestine into the lung cavity. His DH had got worse. As such they'd taken the decision to put him back on the vecuronium. Completely the right decision. It had been nice to see Daniel slightly more awake yesterday before I left, and actually make eye contact with him, but not at any expense.

Furthermore they've taken the decision to perform a dilution (as opposed to a transfusion, where they put blood into the patient). This would reduce his haemoglobin count and thin his blood making it easier for his heart to pump. Some of the blood gas measurements had been a bit touch and go over the last couple of days. I managed to lighten the mood by asking if they still used leeches for the procedure. It was good to learn that they didn't.

Sarah and I met with the surgical team today who explained all the risks of the operation tomorrow. The main one that stuck in our heads was adhesions. Apparently where the intestine is touched to pull it down through the hernia the protective coating of the intestine can be removed. This allows the free movement of the intestine over itself. So this is now a lifelong risk that Daniel has. Something we'll need to tell him about when he gets older. Symptoms include vomiting black bile, so not that nice.

It was lovely to see Sarah with Daniel.

We'll always remember the week they were born, it was so unseasonably hot. I'd taken to wearing shorts. At the end of  September people!

Wednesday: Oxford (Day 2)

So a great service that SCBU / NICU departments offer is the ability to call them whenever, morning, noon or night. I settled into a routine of calling the departments as soon as I woke up (or thereabouts) and before I went to bed. Goodness knows how many of the staff that I spoke to at John Radcliffe, but they were all amazing. I revelled in the detail, asking questions and really getting into the nitty gritty of the Daniel's issues. Doing so, I managed to take my mind off the bigger picture.

There are three departments for sick babies. In order of ascending seriousness they are Special Care Baby Unit, High Dependency Baby Unit and Neonatal Intensive Care Unit. Daniel was being care for in John Radcliffe NICU, whilst his brother was in SCBU in Stoke Mandeville.

Wednesday brought good news. There were three reasons why Daniel's prognosis was very good:

1. Firstly the hernia had only been found at birth, not during any of the scans. This meant that it probably developed later in the foetal development.
2. Secondly his stomach wasn't in the lung cavity. So the hole in the diaphragm isn't that big. Only intestine has made it into the cavity.
3. Thirdly, clearly at the top of the X ray, some lung can be seen. He's not missing a lung, there's something there, hopefully quite a lot there, to expand into the cavity once the operation is carried out.

More good news. The ventilator is only very gently having to support his breathing and with very little enrichment of oxygen. The consultant went as far as to say that they very rarely see babies with diaphragmatic hernias needing so little support. So that's got to be good. In terms of rarity I've heard  different measures but somewhere in the region of 1 in 8,000 to 1 in 20,000 births have such a defect, not that that helps.

On a less good  (but not terrible) note are the results from the heart scans yesterday. Although he doesn't have a congenital heart defect that some DH'ers have, his heart is larger than normal. This was caused by him being the recipient twin in the TTTS. A normal baby has a haemoglobin count of somewhere in the region of 14. Daniel's was 23. Whilst Alex's was 9. Where Daniel had receive too much blood from the placenta his heart had had to grow to Tour du France cyclist proportions to pump the glut of thick blood around his system. Although the valves were all working there was a slight murmur, some back wash from one of the valves leading to the lungs. This should resolve itself in a few weeks or months.

More good news was that they're turning off the paralysis drug, vecuronium. They're so pleased with his progress that they want to restrict the amount of drugs entering his system. If he doesn't need it, let's turn it off.

So I headed over to Stoke Mandeville again this afternoon, where Sarah had been discharged. Slightly sooner than she would have liked, but at least she can come with me to Oxford tomorrow morning and see Daniel for the first time since Tuesday early morning.

Tuesday: Oxford (Day 1)

My first thought as I woke up this morning was "Is Daniel alive?". Not a great start to the day.

Sarah had sent me a text at 1:45am. They'd wheeled her down to SCBU to send Daniel off on his ambulance ride to John Radcliffe. She'd also sent me the phone number for SCBU over in Oxford. I gave them a quick call. They confirmed that he'd made it over there in one piece and they were looking after him. I hopped in the car and headed over there. I saw Daniel like this when I got there: 

Daniel was being looked after in what is termed the "Hot room". I'll give it that - it was hot. It was also alive with sounds, beeps, alarms, babies crying (there were 4 other babies in the Hot room) a very confusing place. Always something going on. And so much equipment, this is just Daniel's corner:

So with my concentration flitting from alarm to alarm, beep to beep, I settled down on a stool to concentrate on one thing. To try to drown out everything else. I chose to concentrate on Daniel's breath. Watching him breathe, up and down, in and out, gave me something to do. Now babies stop breathing every now and again. Everyone does. Everyone pauses. And then has a deeper breath, it's natural. So fairly soon after I started watching him. He stopped breathing, which didn't concern me particularly. Until I started counting to myself

"1 .... 2 .... 3 ...."

"6 ... 7 .... 8 ...."

Now he's on a machine that's breathing for him. That screen in the above picture on the left hand side. So in retrospect that's weird.

"9 ... 10 ...."

"Erm... he's stopped breathing", I said loudly. 

Three nurses descended. One unhooked the ventilator and started manually ventilating him, I remember the instrument labelled "NeoPuff". No idea why that stuck in my mind. Two other nurses looked at the Ventilator.

"'System Error 342', never seen that before."

No beep. No alarm. There are frikkin' alarms going off every where, except here. Obviously they'd have found out when his heart rate changed or another alarm went off, but that's not the point.

By the way, none of this is to disparage the work that the staff do there. They were absolutely awesome, couldn't fault a single one of them. They all deserve medals.

So Daniel was on three drugs. (At one point he did have 5 pumps, but I didn't manage to get a photograph of that set up.) Additionally he had a TPN pack, a nutritional supplement / replacement. Basically glucose, vitamins, minerals and fluid, everything a growing boy needs. So these three drugs are Dopamine, to control his blood pressure, Morphine for pain and Vecuronium, a paralysis agent. Quite difficult to watch as all that Daniel could do was slightly open his eyes and roll them. 

Children with a Diaphragmatic hernia have a predisposition to heart defects and one of the cardiologists at John Radcliffe spent a good hour and a half scanning his heart. She did find something but was unwilling to discuss it with me until she'd consulted with one of her senior colleagues and evaluated what it was.

So I stayed with him a few hours. John Radcliffe were very organised and provide parents with car parking tickets so you can park for free. So whilst they were scanning his heart, I wandered over to the car park attendant with my filled out form and got a car park ticket.

But then, difficult as it was, I had to leave. That's the thing about Twins, there are two of them. And Sarah was also still recovering from her operation, so I headed over to Stoke Mandeville in the afternoon so see the other two members of the Cleaver troop. They were doing fine and here's a picture of Alex: 

Monday: Two Birthdays

Wow. What a day. At once, one of the best and one of the worst days of my life so far.

Where to start? Well aside from the obvious, a good place to start is the 11th May. The dating scan where we discovered that we weren't just expecting a child, but two children. Sharing a placenta, so identical twins. The unfurling weeks and scans would reveal identical twin boys and the fact that they were DiMo (Diamniotic-Monochorionic), not the most risky (a classification reserved for Mo-mo's). But still with their fair share of potential issues. Principally, Twin to Twin Transfusion Syndrome (TTTS). This is where one Twin is greedy and takes more of their fair share of the blood flow from the placenta.

And so, every fortnight we trotted over to Stoke Mandeville hospital near Aylesbury (coincidently where I was born) for extra checks to keep an eye on TTTS. These scans showed that Twin 2 was smaller than Twin 1, but that we weren't to worry as identical twins would never be exactly the same. One of the last scans diagnosed a blood flow issue to one of the Twins brains; amazing things those scans. So, Sarah was admitted the following day and we waited for an available slot in the elective caesarian list. That slot came this afternoon at 4:30pm.

Difficult to describe your emotions, in theatre, scrubbed up, holding your Wife's hand, waiting. Trepidation, nervous, happy, excited: they all apply. And the cut, the rummaging, Sarah reporting feelings of movement (the spinal turned off pain, just not rummaging). And the listening. I remember listening out.

There was a cry. And another. Was that the same cry as the first one?

I was called round to cut the umbilical cords. To meet my sons for the first time. My god they were beautiful. But so completely different. The larger, red, puce almost, obviously Twin 1, Daniel Peter, 2075g (4lb 9oz). The smaller, very pale, almost white, Twin 2, Alexander James 1620g (3lb 9oz). I cut Alex's cord. But was aware of an urgency in the staff. They wanted to take them away to check them out. They wheeled them past us in a double incubator, paused for a moment so Sarah could see them and they were off.

I went back to hold Sarah's hand as she was stitched up and helped wheel her to a check up area. We stayed there for a half an hour or so, nervously grinning at each other. We were parents.

Daniel being ventilated

I can't really remember what happened after that. Certainly can't remember who told us. Alex was fine, but there was something wrong with Daniel. He wasn't breathing so he was being ventilated. Gradual drip feeding of information as X-rays were performed and tests done. He had a diaphramatic hernia. A hole in his diaphram allowing his intestines into his chest cavity. The x-ray showed about 90% of his lung cavity full of the unmistakable curvy, waving tube of an intestine.

Th next few hours merge. I remember discussions about Daniel requiring a transfer, calls to Birmingham, Great Ormond Street and John Radcliffe in Oxford to determine bed availability. I remember crying down the phone to my parents and Sarah's parents, giving them the news as I had it at that moment.

Sarah, Alex and the silliest hat in the world

There was about an hour where we wheeled Sarah down to the Special Care Baby Unit (SBCU). Both boys were there in their incubators, Daniel with his extra ventilator box, looking over him, Alex in his funny hat. That was nice, together as a new family. Sarah holding Alex for the first time.

Sarah was amazing. I'm so glad she's my Wife. She bore it so well given she'd just had surgery and was reacting to the anesthetic. She needed to sleep off the drugs and I couldn't do anything there. So I drove home in the dark. And cried.

Awakenings

A lots happened in the last few years. I can't really believe it.

I feel like I was stumbling in the dark towards an end. Now, the light's broken, I've woken up, stretched, yawned, appraised the situation, seen where I was headed and changed direction.

Weird. Life's so good. Must, must make the most of it.