One of the things that I mentioned previously was the doctor told us to expect setbacks, and over the last couple of days, we seem to have hit a few (relatively minor) setbacks – there has been some progress too though.
Smudge has good days and not quite as good days. Today, she’s had a not so good day – her blood pressure and haemoglobin levels are down (both hopefully solvable with another blood transfusion), and she’s back on the ventilator (as she was tired from breathing on her own, causing her to “forget” to breathe which caused a dip in heart rate from 160bpm to 60bpm) having come off of it on the first day.
However, she’s had some positives too – the ventilator is helping with the (slightly scary) breathing issues, the PDA drugs have mostly closed that pesky duct (though not quite, and surgery may still be required), and she’s progressed off the antibiotics for the time being.
Smidge is the more consistent of the two. He was on the ventilator for a day and a half longer than his sister when they first arrived, so his breathing isn’t so tiring yet, although he has started to show signs of it. His assisted breathing has been put back up to level 2 (biphasic), which means he gets a bit more pressure at the moment he breathes in, as well as at all other times.
Katie has now had two cuddles with Smidge outside of his incubator, this time for 45 minutes and with a bit more skin-to-skin contact, as was the intention the first time.
I did a full care cycle with Smidge (mouth clean + nappy change), with guidance from one of the nurses, and also fed him (check stomach acidity levels, then empty a syringe of milk into one of his lines) with help from another nurse. More practice needed for me to progress to being comfortable and confident in repeating those tasks, but I’m sure I’ll get a chance or two :-). Katie has done several of these care cycles for both of the twins.
One undoubtedly positive bit of news for the twins is that they both now have proper names! At this stage, we’re not making their names public online to at least try and give them a bit of privacy for the future. If you are one of the lucky ones who know the names, please keep it to yourself!
We’ve now got six weeks to register the birth, and potentially another year in which to register their names (of course, now we’ve agreed on names, we’ll be registering everything together) and that’s got to be done in Southampton where they were born.
Having read one of the previous posts here, a friend of my Mum commented that she wondered if Katie was offended in some way that I wrote I hadn’t developed an emotional bond with the twins yet. Of course, Katie wasn’t, and I do think that the bond is present and growing.
When Smudge was having her apnoea (forgetting to breathe), the nurse would stimulate her foot or rub her back and that was the problem solved. When one of the other set of twins in the room had the same alarms going off, then the same nurse tried the same technique, and when it didn’t work, had to put both hands in the incubator, turn him over, and do chest-compression motions for a couple of seconds until it was back to normal – afterwards, even the nurse said it was a bit of a scary moment.
Just that one observation of another baby made me realise how close to the line our babies could be. Of course I would be devastated if either of our twins should die (and it is a ever-present possibility, that the fantastic nurses continuously counter with their care of them), and that’s my way of telling myself that the bond is there.
So far we’ve had both sets of the twins’ grandparents and their uncle come down to see them. It’s nice to have had visitors for a couple / few days each, but it’s also been nice to have had some time in between where it has just been me and Katie. We’re finding that balance between wanting to share our experiences of having twins (in this case, going to see them in the neonatal unit), and having time just for the two or four of us. We’re also slowly working out a routine that works for us in terms of seeing the twins most days, and spending time at home doing other bits.
If anyone wants to come and visit for the day, let us know and we’ll arrange something for after Christmas.
Katie’s expressing is going really well – her total time for both breasts is now less than what it was for one breast (at the start), and there’s far more milk in total too. With the twins being on 0.5-1ml every two hours, and well over a litre having been produced so far, the twins aren’t going to get hungry any time soon!
The only downside, is that she currently expresses at 10pm, 2am, and 6am (then every 2-3 hours during the day), and that 2am alarm is disturbing my sleep, let alone what it is doing to Katie – I suspect some afternoon naps may be in order for both of us, especially while we have the chance.
The neonatal unit hold a coffee morning each week, aimed at parents of those who have babies currently in the unit, and also those whose littl’uns have since left the unit. I think the idea is just to get to meet some other people who have had, or having, the same experiences as us, although it was a particularly quiet morning apparently, with only two other mums and their 1yo’s turning up. Useful to hear what they talked about though, so we’ll try again next week.
It’s now been a week since they arrived, and I’ve not had my main computer on at all during that time. I’ve been keeping abreast of the work-related emails that have come in, but I now need to do the rest of this evening in work mode, although I’m really not feeling it.
I thought I’d be able to disassociate myself from the issues the twins are having when I tried doing some work a couple of days ago on the laptop, but funnily enough, I couldn’t – my brain wasn’t in the right mindset to be writing web development code. Being self-employed has mostly been a positive in terms of the pregnancy (being able to attend all the appointments with the midwife, doctor and hospital) so far, but now it means that I have to get on with work, as if it doesn’t get done, I don’t get paid. There’s no statutory paternity pay for self-employed fathers.
Getting Smudge’s PDA issue sorted, stay on the ventilator for a few days, getting their birth and names registered, get Katie finally discharged from the midwife, me getting some work done.