No longer in intensive care! Merry Christmas!

Adam is 38 weeks old (gestational age) today, or 72 actual days old, and probably weighs 1.5 kg (he was 1.49 kg yesterday and they didn't weigh him last night!).  He is getting cuter by the day.  Today he was moved from intensive care to "high dependency" care, which doesn't mean a vast amount as he can get all the care he was having in his intensive care nursery, except the stuff that they need if something goes wrong is a bit further away.  It also means we are now slightly nearer the entrance and the tea room, which is handy, I guess.  He's still on the "Optiflow" breathing support, at slightly higher oxygen levels than he was last week (30-40% now) which is probably fine as he's almost totally come off the steroids that were helping his lungs, though I'm a bit worried that he's slipping back and would rather he was going down the oxygen rather than up. He needs to wean to much lower oxygen concentrations and flow rates before he would be able to come home.  He would also need to grow a lot more (he's less than half the size he should be at his age)!  So growing and breathing are still the things to focus on in the future.

I spent half this week not being able to see Adam at all though, as I got a nasty cold, and after 65 days with only one day away, I had to stay away from the hospital for 3 days so as not to risk infecting him or anyone else. In the meantime, he had lots of Daddy-love, who discovered the art of rocking as a cross baby soothing strategy. On my first proper day back though, he made another leap forward, and was put into clothes for the first time!  This was swiftly followed, overnight, by being moved from his incubator into a cot.  He has handled this transition well, and looks more and more like a proper, though tiny, baby.  Dressing him has been delightful - he's been pretty unfazed by the process and incredibly seems only borderline small enough for his first growsuit for 3 lb babies (he must be 3.3 lb now).  Now he's in a cot he is much easier for us to get out for cuddles on our own, which we've been enjoying.  He spends most of the day asleep, or almost asleep, and usually settles well if he's sucking his dummy.  Unfortunately he's still no good at keeping it in his mouth, so keeping him settled is often fairly labour intensive, and his suck is growing ever more powerful, and noisy!  When he's awake, though, he really properly looks around at stuff and is very, very cute as his eyes are really big compared to the size of his head (and he's beautiful, but I am rather biased).  I loved coming in one morning this week to find him being dandled by one of the lovely Irish nurses, while he gazed around with a somewhat perplexed expression on his little face.

So, he's lovely, and seems to be more or less moving in the right direction, the little star!  I hope he can keep on with it.  I'd like to take this Christmassy occasion to thank everyone again for all your support and love throughout all this, and to apologise for the Christmas cards that you won't have received.  Despite not having found time to send them, this has been the year when we have really learnt to value everyone, whether near or far, and we'd really like you all to know that.

Merry Christmas!
with love from Catherine, Chris and Adam xxx

Clothes!

Cot!

Cuddles!

Dummy!

Zzzzzz....

2 months old, here for the long haul, but a little star

Adam was 2 months old yesterday.  He is 36 weeks and 4 days and weighs just over 1.3 kg (just shy of 3 lb), his maximum weight having reached 1.4 kg since my last post but having decreased again after he was given diuretics to get rid of his excess fluid.

After my last post, he was off the ventilator for less than a day and rather gallingly was probably being reintubated (having the ventilator tube inserted into his airways) as I wrote about looking forward to cuddles the next day.  The consultant then came up with a plan, trying to optimise everything so that the next extubation (coming off the ventilator) would work better, giving the diruetics to get rid of fluid around the lungs, upping his steroids, and feeding him slowly but continually into a tube into his gut rather than his stomach.  This last strategy was to increase his nutrition and strength as his usual gastric feeds (via a tube into the stomach) need to be stopped before extubation/intubation events then slowly built up to the previous level. It also prevents the milk refluxing up from the stomach, eliminating the chance of Adam aspirating any milk, something that may have caused his lungs to take a step back suddenly last week, so that he needed to be reventilated.   Less nutition can be absorbed from the feeds into the gut, breast milk fortifier can't be added, and the steroids inhibit growth, so breathing rather than growing was a priority this week.  The hope was that in a couple of days the ventilator pressures and oxygen levels he needed would be lowered enough to extubate him again.  By Monday, however, he was still needing high levels of support.  Reviewing his case and looking at a recent chest x-ray, the consultant was again struck by the small size of his lungs and the degree of damage. Given that and his slow progress the consultant warned me that he seemed to be turning into a "chronic baby" and will need to be in hospital for another four to six months, even then still requiring supplemental oxygen through a tube to his nose.  There's also a high chance he'll also still need to be fed through a tube from home too.  It's a hugely depressing thought that we might be only a third or a quarter of the way through this life of hospital visits and huge worry, and that Adam might have to spend the time when he should be at home being stimulated in a "normal" way, still in the inevitably sterile and disruptive hospital environment.  If this is the case, it will clearly also have implications for maternity leave and my subsequent career that I haven't really managed to internally address yet.

The plan was still to get Adam off the ventilator as soon as possible and by Wednesday, after rather longer than the recommended time on the highest dose of steroids, his ventilation requirements had dropped enough for them to try extubation.  It was time for progress. Unfortunately, Adam refused to breathe at all when they removed the tube, requiring them to rapidly reintubate.  Undeterred, the doctors reduced his level of morphine (required while intubated to make babies calmer so they don't move the tube too much) and tried again on Thursday.  This time he breathed like a trooper.  Hurrah!  Despite clearly not liking either the reduction in morphine, or the CPAP mask now stuck to his face, or both, he managed to do breathing all day successfully, with his oxygen requirements falling to lower than he had been on when ventilated (50% to 40%; usually oxygen requirements are higher on the lower level of support provided by CPAP). After last week, I was not counting any chickens, but on Friday morning he was still on CPAP, with his oxygen requirements having dropped further.  He was more settled too, though he was much happier when having a finger to grab on to and his dummy held in place.  This is a full time job, but luckily, his Granny and Chris were also around for a lot of the day to share dummy-holding duty.  Cuddles were back on the agenda too.  Annoyingly I felt a cold developing so had to forgo mine so as not to risk giving him any infection, but Chris manfully stepped up to the breech and had a lovely long cuddle, during which Adam did very strong sucking of his finger (see pic).

During the cuddle, the consultant came in and was very pleased that her plan had eventually worked.  Chris then rather cheekily asked if Adam could soon go onto Optiflow (the support without the squishy-face mask).  The consultant smiled and said that babies did like it much better than CPAP but they now only had two machines as they'd had to send the ones they had been trialling back.  She'd previously said that he'd have to be stable on CPAP for a long time before they'd put him onto Optiflow, but we've been mentioning how much he liked Optiflow last time at pretty much every meeting, so they probably have got the message that we're keen on it!  Anyway, we were delighted when just after Chris had put Adam back in the incubator, the consultant poked her head around the door and said that there was a machine free and we could try him on Optiflow.  He liked it a lot and I think the night staff were much happier too, as he'd had a very disturbed night on CPAP, keeping them busy with his grumpiness.  They informed us that he was much better on Friday night.  He's now been stable on Optiflow for two days, requiring 25-35% oxygen, much lower than he's been on for weeks.  He's made absolutely amazing progress! We both had more cuddles over the weekend and spent a lot of time on dummy duty. We realise that as he's got older, this time being comforted is becoming more important to him and we want to do all we can to keep him happy and stable.  We've learnt from bitter experience that he probably will step backwards again (and his oxygen requirements will go up as his steroids are reduced), but we want to support him as much as possible at to try and stop this happening.  Luckily this ties in with Chris' term finishing so we can share hospital duties a bit more.  So, here's to more breathing, more growing and more cuddles! xxx

Back on ventilator, with monkey placed in Adam's line of sight - but it looks like he's looking at it, doesn't it!

First cuddle for two weeks, chomping at Daddy's finger

After the cuddle and wide awake, looking a tad like a wee frog.

A few minutes later, on Optiflow.  Hurrah! 

Tubes

Well, it's been another rocky week for little Adam.  Since my last post he calmed down a bit, stopped being so grumpy, and reached 34 weeks, though without doing much in the way of growing.  We had a lovely cuddle on Saturday when I sang him lots of snatches of songs, the lucky boy (note to self: learn more than the first line of some songs!).  He was also placed on the waiting list for an Optiflow machine, which would have made him very happy, as it involves a nice little nasal tube, rather than a big prongy mask thing that squishes his face.  Unfortunately, on Sunday his oxygen requirements escalated and he wasn't coping with breathing on the CPAP machine (continuous positive airway pressure) that gave him support for his own breathing.  He was placed back on the ventilator, with a big tube down his throat, directly inflating his lungs, but as there was no sign of infection, the doctors thought it was just that his lungs had got tired, which often happens.  They thought he'd only need to be ventilated for a day or two, until his lungs had had a rest - then he'd be able to breathe on his own, albeit with the help of CPAP.  This didn't happen, however, and over the course of the week his oxygen requirements increased, as did the air pressures required to keep his lungs inflated.  At the same time he was having progressively more desaturations, where the oxygen level in his blood dropped (important for delivering oxygen to the tissues and dependent on decent lung function).  Basically, he wasn't winning.  After three days, he was prescribed another course of steroids.  Yesterday, after they should have started to work, he was still poorly and his heart rate had also started slowing occasionally. It really felt like we were going backwards and I couldn't see how it was going to change. I was very down - it had been two weeks since he was really doing well and they were talking of moving him to our local hospital.  Not seeing any progress brought all the short and long term worries to the fore:  what the lack of good growth, a couple of potentially worrying features on his head scan last week and his prematurity will do to his long term development, and, given his lung problems, the fact that at 7 weeks in, we are almost certainly less than half way through his hospital stay.  It all just felt overwhelmingly much, though thankfully at various points in the day I had friends, family and Chris all to pull me up and put me back together!  After all that misery, and not sleeping well, I wasn't sure how I'd cope with the hospital today, but the little man really helped me out.  He'd pulled out his ventilation tube early this morning and had been put back on CPAP, and was doing fine.  Today he was a bit grumpy, pulled out his feeding tube a lot, dislodged his CPAP a few times, but only had the odd desaturation - and he's reached 1.3 kg, twice his birth weight, albeit with a fair bit of fluid retention.  I don't know how he did it!  I guess the steroids kicked in a bit late?  Anyway, this one day of progress makes it easier to see into a distant future where Adam is home and healthy.  Hurrah!  He's also super-cute and hopefully we'll get to hold him properly tomorrow, if he's still doing ok.  After the last few days, I'm not taking anything for granted, so fingers remain firmly crossed.