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.