The Operation 

Up till recently it’s been a bit too raw for me to write about Barneys operation, particularly because he’s been doing so well, I didn’t want to dwell on such a shit time.

But here we go:

The night before his operation we washed Barney out (for what would hopefully be the last time) packed the car up and then travelled to Norwich to stay with one of my sisters (she lives very close to the hospital and has been an absolute saint! She put us up at her house and looked after us really well during the whole ordeal, even though she was heavily pregnant and on maternity leave and should really have just had her feet up). Saying goodbye to family members before we left for the operation was much more emotional than I expected. 

Barney slept through the night like an angel, and I woke him at 3am for his last feed before the operation. He wasn’t allowed milk after 4am, and then could just have sips of water until 6am. 

They had booked the theatre for the whole day because the operation can be quite long, and he had a morning admission time.

Being the angel he is, he went back to sleep after his feed and we had to wake him to take him to the hospital at 6.30 because he normally slept till 8.

I didn’t sleep, I worried and twisted and turned in bed, with an anxious knot balled up in my stomach churning away.

After a quick pump to keep my milk supply going we headed to the hospital. We were put in the High Dependency Room, right next to the nurses station, with another baby and the nurses got us and Bee ready for surgery.

The morning seemed really long while we waited for him to go to surgery, getting in lots of cuddles and making him laugh. I didn’t want him to pick up on our anxiety before he went, I wanted him to be happy and settled, so we smiled and played with him as much as we could.

We saw the anesthetist and the surgeon (our consultant) for any last minute questions and then we went off. We carried Barney through the long hospital corridors up to the theatre. I gave barney a kiss and a cuddle and his daddy took him in to the theatre. I had been warned by friends that some babies fight the anesthetic and it’s upsetting for parents (particularly mums) to see them have it, so we had agreed that hubby would take him in. I sat in the family room next to the theatre and just sobbed. When my husband joined me we were briefed on what would happen next, we were given a pager and told we would be buzzed towards the end of surgery.

Barney went into theatre at 9am. We went back to my sisters house, had breakfast and tried to just busy and distract ourselves. The hospital had told us that the pagers reach as far as Norwich town centre, and they advise parents to go home or to work or shopping, just anything to keep themselves distracted.

We knew the surgery would be at least 6 hours but we headed back to the hospital at about midday anyway, not wanting to be far just in case.

At 3.30 we were finally paged to go to the theatre, we waited another thirty mins and the surgeon came out to tell us the surgery had gone well. It was only Short Segment (SSHD) and he hadn’t needed a colostomy bag, and had only lost a tiny bit of blood.

He said they would now be finishing up and setting up the epidural which would be his pain relief for the next few days.

It was another hour and a half until we saw him in recovery. He was asleep, with machines and people buzzing all around him. He had IV fluids and antibiotics, heart monitors, a catheter and the epidural so we couldn’t pick him up. They wheeled us back to his room and he started to perk up, that first night he was quite spaced out, staring in to the distance a lot. They managed his pain well though and there was only one instance where they hadn’t given him his paracetamol in time that he became very distressed.

The next day you could see he was doing well, he was alert and kicking his legs, he was grumpy as he was hungry and wanted a cuddle, but otherwise doing really well. He even smiled at the consultants and nurses. 

Barney had his operation on Monday and was nil by mouth until the Thursday. Wednesday night was the worst night because that’s when he was really bothered by the hunger. And at this point we still couldn’t pick him up because of all the tubes and wires. So the nurses would give us some sucrose (sugary watery solution) to squirt in his mouth which was usually enough to settle him for a bit so he could sleep. 

Because we couldn’t pick him up we had to be more innovative in ways to keep him entertained and comforted. He loved cuddling his bumble bee toy! We played with him doing funny voices and acting out little scenes. We also learned that barney loves the telly, so we would pull that over the bed so he could watch it. (Although because it’s a children’s ward the TVs stop working at 9pm!). He particularly liked watching Poldark with me when I stayed over night on the ward – must be those lush Cornish accents.

Family members came to visit, my mum and dad came every day and my sister would cook food and bring it to the hospital for us. This was such an amazing support for us because being on the ward is horrible. You have new medical people come round every day and ask the same tedious questions, and run tests and do observations. They come at the most inconvenient times – like when he’s asleep. Or they forget to come at all and don’t silence machines when they have finished and the machines beep away and wake up the lovely sleeping baby (who it’s hard to get to fall asleep as you can’t feed or hold him). So having family round was lovely, it gave us new faces to talk to, some respite and some well needed emotional support. 

Barney started having bowel movements on Tuesday night! I can’t tell you (and you probably will never understand it unless your child has HD) how fantastic it feels when your child poos. Even if they smell like the worst thing on earth (which they did straight after the op). But it’s still bloody amazing! Oh and he also started trumping away! Farting like a trooper!

By Thursday they said Barney could start eating again. They kept him nil by mouth so that his bowel would have time to heal, with as little as possible passing though it. He had been getting what his body needed through an IV drip – straight into his blood. They would only let us feed him tiny amounts of expressed breast milk every three hours by bottle on the first day, 20mls, then 40mls, then 60mls (then 60mls after that). This is because the doctor didn’t want his bottom to be overwhelmed by nappy rash when it started working again. 

But as we introduced food, boy, did he start pooing! It was non stop explosive poos! The only way I can describe it is like a comedy fart noise, super loud and wet. But again I celebrated everyone,  i didn’t care if they were in the middle of the night, I still celebrated them. The only awkward bit was changing his nappy before they took the epidural and catheter out. Especially because Barney has a new party trick – while I’m cleaning up one poo he likes to squeeze out another one – so in the hospital this meant a change of bed sheets and pissed off health care assistants.

Barney was discharged on Saturday morning and we were advised to stay in the local area for a while just to be on the safe side, so we were near the hospital. So we stayed with my sister for another week. The hospital discharged us with some medi-honey (nappy rash cream) and some paracetamol for his pain. I have gone into some detail about nappy rash in another blog post and why that particular cream is useless!

On the day he was discharged they took his dressings off and we finally saw his wound. It was a shock, we had been told he would have keyhole surgery but his scar was the size of my csection scar just positioned more to the left. But we discussed this with the doctors who explained that they sometimes find they can do a better job if they do it that way rather than keyhole. (Also 7 months on his scar is so well healed and faded you can barely see it at all).

But we had our boy! He was out of the hospital! And his bum worked!!!! And he was doing amazingly well!

Since then we have had a few bumps in the road, weaning, constipation, nappy rash, severe allergic reactions, asthma, eczema, gastroenteritis…. but we have only had to wash him out a handful of times since his operation! And he bounced back from the whole thing so quickly!