Progress and Setbacks

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

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

Katie, Smidge and Gary during a cuddle

Katie, Smidge and Gary during a cuddle

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.

Names

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.

Bond

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.

Visitors

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.

Expressing

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.

Coffee Morning

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.

Work

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.

What Now?

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.

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Gary Jones

Gary Jones is a UK-based WordPress Engineer, code consultant, and father of extremely premature twins. Driven by a passion for excellence, he creates elegant WordPress plugins and theme solutions for clients, and provides services, including code audits, for other designers and developers. Gary is a key contributor to the Genesis Framework and has contributed to all except one major branch of WordPress Core since 3.3. He has contributed to many open source projects in the community, and is a co-host on the UK Genesis podcast. A former teacher in schools and prisons, Gary's goal is to educate WordPress professionals on how they can improve their code. His motto is knowledge is power.

  1. Susi Birkitt on 2011-12-07 at 20:55

    It sounds like you’re all doing brilliantly Gary. It must be difficult, but keep going and keep strong!



  2. Bev near KC (HGP friend of Katie) on 2011-12-08 at 04:35

    Dear Katie (and Gary),

    Congratulations on your 2 little blessings arriving. I’m glad to hear that you’re doing well and have been discharged from the hospital. Do please take it easy. Wearing yourself out will NOT help the twins in any way. I’ll be keeping you, your beautiful twins, and your husband in my prayers. I hope it’s only 2 steps forward and 1/2 step back for them, if it has to be steps backwards at all. I pray they just keep getting stronger and healthier and developing and astonishing everyone with how well they’re doing and how quickly they’re doing it. Just wanted you to know that we all care and are supporting you…even from ‘across the pond’. 🙂

    Much love,
    Bev near KC



  3. Becky on 2011-12-08 at 08:53

    Gary,
    The emotional bond will come all of a sudden. I found the first few weeks unbelievably tiring and the feeling towards my girls more like a sense of duty than a love for them. There was just a need to get through the next day / feeding round.
    Then suddenly one day, one of them looked at me and I got a rush of emotion and thought ‘yes I do love you both’ and had a real cry about how lucky we were to have them and how tired / stressful things had been.
    Becky xxx



  4. Craig Killick on 2011-12-09 at 16:47

    Gary and Katie. Well done. And well done to the brilliant nurses. The birth of a child is one of those things we all take for granted but as you say Gary, it really can be a tender line. As for two and as for them being so premature and my head starts spinning.

    I can’t imagine how draining it must be for you both in some many different ways. Keep on keeping on!



  5. Carol from MO (HGP) on 2012-01-16 at 03:41

    Katie (and Gary, too)~so good to read about your precious bundles and see their pictures. They are growing and progressing remarkably well for having been so premature. I’m sure you know what miracles of life you are holding. Such a journey you are on. We are blessed to share it with you in some small way.

    God’s blessing to you both and to your little family.
    Carol from HGP