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Jos' story

24 September 2015
Elliot and Barney in hospital

When Jos' wife Sandra gave birth to premature twins, he regularly sent updates to family and friends via email, to let them know how the boys were doing. The boys are now happy and healthy five year olds, and Jos has just been named the top fundraiser in the Bliss RideLondon team. Read the emails below describing the twins first few weeks of life:  

Monday 22 June 2009 16:13 

Subject: News from Sandra and Jos

Hi everybody,

Further to recent speculation and rumours, Sandra and I are delighted to announce that Sandra is expecting our first child! And, to our surprise and further delight, our second child too! Yes, identical twin boys, due in December.

Obviously we've been dying to tell you all for a while, but had to wait until the main test results came back, which happened today. Although even we were completely unaware it was twins until the first scan last Tuesday.

We're getting in the trips this year - Glastonbury, China and somewhere else hopefully, before we're grounded!

We'll keep you posted and hope to catch up with you all very soon.

Lots of love

Jos and Sandra xxx


Thursday 23 July 2009 19:20 

Subject: Update from Sandra and Jos

Hi everyone,

Just thought we'd better update you all on recent events, as there have been some complications with the twins.

We went for a 'cursory' 17-week scan last Thursday afternoon to check all was still ok prior to heading off to China. The results revealed a condition had developed called twin-to-twin transfusion syndrome (TTTS), which means one baby is taking too much of the blood supply from the other.

It's a very serious condition with a very high chance of mortality, the only treatment being draining some amniotic fluid, or laser surgery in the womb to cut the blood vessels connecting the twins.

We were therefore unbelievably lucky to be in a hospital with one of the world's leading experts in TTTS. He carried out the laser surgery that evening. The procedure involved a thin tube being inserted directly into poor Sandra's tummy and through to the womb, through which a tiny camera and laser were inserted. He then (with about 20 doctors observing) identified all the connecting vessels and 'cauterised' them with the laser - the whole thing took about 30 minutes. The only sign of it is a small plaster on Sandra's tummy.

The risks of survival after such intrusive surgery were given to us in thirds – 33 per cent chance of both surviving, 33 per cent of one surviving, 33 per cent of neither surviving. So, between then and a scan earlier today we've been waiting and hoping, trying to be positive but preparing for the worst. We were incredibly happy and relieved to see two moving babies on the screen, and reassured by the doctors that everything looked good. We need to check on other risks and potential issues (too emotionally drained to ask today), but hopefully they should be safer now.

Well, apologies for the essay - I think it's a result of the relief! And in case it wasn't obvious, we had to cancel the China trip.

We'll keep you posted and hope to catch up with you all very soon.

Lots of love

Jos and Sandra xxx

Bouncer Hermy

Monday 28 September 2009 10:38 

Subject: Twins

Hi all,

Just a quick note to let you know that Sandra gave birth to the twins on Sunday morning by emergency c-section, at 27 weeks and six days - I guess they just couldn't wait to get out! Twin one was born at 3.01am weighing 3lbs, twin two was born at 3.02am weighing 2lbs 8oz. Obviously they are in intensive care at the moment and will be for the next few months, but they seem to be doing well - twin two was off his ventilator within 12 hours, hopefully twin one will be very soon. They were both transferred soon after birth because there were no cots available. Sandra was transferred today, she’s fine but a bit tired and emotional (as is to be expected), hopefully she will be out in a few days. No names yet, but Sandra has had nicknames for them for the last couple of months. The larger is Bouncer, due to his tendency to jump around a lot, the smaller is Hermy, due to his tendency to curl up tight like a hermit crab. 

Here’s two photos (above), when they were about two hours old. Despite twin one being the biggest he is the less stable, with concerns about his lungs. He has had a tube inserted into his side to drain air leaking from his lungs into his torso, but that should be removed in a day or so. Although twin two is the smaller and one would presume the weaker, they seem to be happier with him.

Hope you're all fine, I'm sure we'll be in touch soon.

Take care - Sandra and Jos x


Friday 2 October 2009 16:48 

Subject: Latest twin photos

Hi there,

Tried to get some updated photos, but it’s been either too dark, or Bouncer has been far too busy sunbathing! Hopefully you can make these out though, and the one of Hermy is just so sweet! He's coming off his CPAP for five hours plus at a time now (so no face mask or hat), Bouncer's managing an hour or so at the moment but they will increase that time slowly. As you can see, we've both been having cuddles occasionally, or 'kangaroo care' as they call it. Sandra's milk is starting to come through, so they're getting small amounts of that through the tube into their tummy via their mouths.

Take care - Jos x

                Jos and Elliot   Sandra and Barney

Tuesday 13 October 2009 22:31 

Subject: Twins - two weeks and three days

Hi all,

Thanks for all the messages of congratulations and offers of help, very thoughtful and touching.

Firstly an answer to the question we've been asked every five minutes by everyone - "have you got any names yet?" After a short period of deliberation (remember we're a couple who spend ten minutes unable to decide which duvet cover to use...) we will be instructing the registrar on Monday that Bouncer will be known as Barnaby Edward Howard, and his little brother Hermy will be Elliot Montague Howard. Although I have a feeling the nicknames may persist.

So, two weeks and three days down the line. Sandra's recovering well, increasingly mobile but very tired due to having to express milk every three hours - day and night.

The chaps are still doing well, but have had a bit of a setback due to being transferred again last Wednesday, when two cots suddenly became available. Both of them had been improving very quickly, but particularly Elliot, which was a surprise given he's the smaller. Barney had his chest drain removed and they were both off the breathing assistance machines (CPAP) for hours at a time. They were increasing their intake of milk, their jaundice sorted out with light therapy and we were getting plenty of cuddles. Here at the new hospital the policies and procedures are very different, and we're not sure whether it's these or the journey that put them back almost to square one.

They were both put back on CPAP full time, milk reduced to a minimum, and a disturbing level of ambient noise and light. I'm not sure who was more distressed with the differences, us or them! There were a couple of confusing and frustrating days before we managed to sit down with a consultant who was able to answer all our queries and concerns, and provide some reassurance.

So the state of play at the moment is that Barney is now slowly increasing his milk intake, and is relying less on the CPAP (although it is still in place 24-7). He's getting really active, which is interesting when it comes to nappy changing! Elliot has had a few issues, sugar levels increasing, frequently 'forgetting' to breathe, tummy upsets, all of which may point to an infection.

So that has resulted in lots of blood tests, X-rays, antibiotics, a cessation of milk and back on full ventilation - poor little thing. But yesterday evening he came off the ventilator and back on to CPAP, and has resumed milk, so hopefully he's on the up again. Despite all this they're now both just about above their birthweights for the first time. The plan now is that they can continue to increase their milk intake, which would mean they could lose some feeding tubes, and also start gaining some weight, which will help with their breathing and get them off CPAP. One day at a time...

We've been asked about visiting, obviously you are all more than welcome and we'd love to see you, but you need to be aware that the NICU can be a fairly overwhelming and emotional place, so we quite understand if you'd rather not. 

Please don't worry about gifts or anything (unless you feel you'd like to), although oddly both twins are rather partial to chocolates, so feel free to bring plenty of those.

Well that's probably far too much for now. Hope you're all fit and well, and looking forward to Christmas! Take care and hopefully see you soon.

Jos and Sandra xxx

 

Barnaby Elliot


Thursday 24 December 2009 15:12 

Subject: Twins Christmas update

Hi all,

As you can hopefully see from the photos, Barney and Elliot were finally deemed healthy enough to be discharged from SCBU and come home on 11 and 12 December, just over a week prior to their original due date of the 21 December. A bit of a surprise, as we were only told when we turned up on the respective days, so some rapid last minute organisation was required to prepare the flat for their arrivals.

I can't remember when I sent the last update, but they've done incredibly well in the intervening period. Day by day, week by week, we've seen wires, tubes, masks, needles and various attachments gradually disappear, and seen them move from incubators to open cots. The only major setback was for Barney, who was diagnosed in November with something called malrotation - basically his intestines had developed in the wrong place in his abdomen, which was causing them to be blocked. Ironically this is a condition that isn't due to being either a twin or premature, it's something that could happen to any baby!

So he had to have quite a serious operation at six weeks old to correct this, but after a week or so of recuperation he was better than ever, and really started to improve with feeds. They also removed his appendix while they were at it, to eliminate possible issues later in life! Not to be outdone, Elliot was diagnosed with a hernia a few weeks ago, which also required surgery, and which turned out to be a double hernia when they operated. This was a much simpler op though, and he was back to normal within a couple of days.

So they've come home just like regular term babies, completely free of any attachments. They are actually 12 weeks old, but technically four days old. Barney now weighs 7lb and Elliot 6lb 13oz - not bad for 'newborns'! We have to administer some medications and supplements on an hourly and daily basis, and they suffer from a temporary condition called reflux, which often causes vomiting after feeds.

Other than that it's just the usual process of changing nappies, dressing, crying, preparing formula, changing nappies, crying, feeding, washing, rinsing and sterilising feeding equipment, changing nappies, changing bedding, crying and sleeping that all babies require - multiplied by two! It really does require a massive degree of organisation and logistics, we're just about coping and hopefully it should get better! Above all they are wonderful, adorable, sweet little things.

They're just stirring from a nap now, so I really have to go - feeding time again! Hope you all have a wonderful Christmas, and best wishes for the New Year.

Cheers - Jos and Sandra x




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