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. 

Forwards again - off the ventilator, but very grumpy

Adam was taken off the ventilator on Monday and is doing fine on the next level down of breathing support.  He's been really grouchy today and yesterday though, which is probably due to him having reflux, which will be giving him heartburn.  They've put him on some new medication to try and help with that, but it had yet to kick in today.  I'd also like them to try him back on the "Optiflow" breathing system that he was on before getting the infection (which seems to be clearing with antibiotics, though is probably not quite gone), but they won't until he's been stable for a bit longer and until they've seen whether the reflux drugs are doing anything (fair point - the golden rule of science is not to vary more than one thing at the same time, after all).  I had a nice long cuddle this afternoon which initially soothed him, though he got grumpy and started losing oxygen saturation at the end.  Mind you, when I was changing out of my hospital robe, which you wear to preserve your modesty during "skin-to-skin", he managed to projectile poo all over the nurse changing his nappy.  Given that I would have probably have been doing the nappy, had I not been getting dressed, I am rather glad I missed it (and was missed by the poo!)  but do hope that part of his grizzling was the discomfort of pressure building up to the volcano eruption.  We'll see, anyway.  He's lost weight the last couple of days, presumably due to being on reduced feeds around being put on and off the ventilator, and from wasting energy grizzling for the best part of a day and a half.  While skin to skin was lovely today, I did feel a darker undertone - that "normal" cuddles with your baby don't involve constant glances at a monitor to see whether their oxygen levels are dropping dangerously low, and being worried that if you slightly shift your position, or that of the baby, they'll stop breathing. I really want normality and when I inadvertently step out from the "day-by-day" mentality that is required to survive the neonatal unit, I realise what a long way we are from reaching it.  We really need him to grow and get big, strong, and rather less vulnerable.  Once again, go Adam, go!

Adam's growth chart, aged 33 + 6 weeks.

Backwards: Another infection and back on the ventilator

Up until Saturday, the rest of Adam's week went well.  He went onto fortified breast milk and we had a couple more cuddles with him.  On Chris' birthday, the Neonatal Unit staff were very kind and got Chris a "super Dad" card with a photo of Adam in it.  Adam also was moved from the intensive care area of the nursery to an intermediate room between intensive care and high dependency care.  The sisters of the unit were discussing the very likely chance that he would soon be moved from UCLH to our local hospital, the Whittington, who were as able to cope with his more stable requirements as UCLH, who were very pushed for beds.

Adam's growth chart up to 33+3 weeks, as obsessionally annotated by mum!

Unfortunately, as per the title of this post, on Saturday morning we received a call from the hospital.  Adam's blood oxygen saturations had dropped in the night.  They had moved him back onto the stronger breathing support that he had been on just before coming off the ventilator, but it was unable to maintain his blood oxygen levels, so in the morning they had to reintubate him.  At this point, it was unclear whether he had simply become tired out by the effort of breathing by himself, whether he had inhaled some milk or whether he had become ill with an infection.  Today, however, the levels of infection markers in his blood rocketed, and cultures grown from his blood were found to contain staphylococcus bacteria.  He's on antibiotics to try and treat the infection, but we don't know whether it is being brought under control or not, how ill he might get, or how long this might go on for.  We'll just have to wait and see.  I know that this sort of thing is par for the course for premature babies - going forward then backwards happens - but these sort of infections can be really nasty, so I'm scared.  It's so hard too seeing him sedated again, so he doesn't pull his breathing tube out.  Luckily, he is still tolerating feeds well, so he is getting nutrition and we just have to hope he can use that to fight this off and get back on that forward trajectory soon.

Adam back on ventilator, aged 33+3 weeks or 40 days

Holding the tiny man

Adam's had another pretty good week, though not without incident.  He's now 32 weeks and 4 days (gestational age) and will be 5 weeks old tomorrow.  He's progressed onto a slightly different sort of breathing support, which means he has to do slightly more work himself, but as a reward gets to only have a nasal cannula rather than a mask that squishes his face.  He seems to be relishing the challenge and is coping fine with it so far. He's grown about a hundred grams in the past week and is now around 970g.  Though that's a fairly impressive growth of over 10% of his body weight in a week, it is slower than he should be growing.  Another mum, who's a doyenne of the neonatal unit, told us that her baby took 6 weeks to reach 1 kg in weight but after that gained 1.5 kg in a month, as they can start fortifying breastmilk when they are big enough to cope with the thicker consistency.  She's great  - she always seems to be smiling and reassuring someone, though I've now chatted to her on a number of occasions but have no idea what her name is.  Anyway, hopefully it all means we will be able to get Adam to grow a bit more soon.  He's now on "full feeds", getting all his nutrition from milk, rather than intravenously, which might help and at least means he's in the position to get fortified milk when he's big enough to have it.

As the title of this entry suggests, though, the big news from this week has been our first "cuddles" with Adam, photos of which follow.  I was first, on Wednesday, and had a really lovely time. The nurses very carefully extracted him from the incubator and told me exactly how to hold him and what was happening.  Though Adam was a bit stressed at the very beginning, he calmed down quickly, and we had about an hour and a half sitting together, skin to skin (you wear a hospital gown and they place him upright on your chest), so we could smell each other and feel each other's movements.  He has a surprising amount of strength in his wriggles for such a small person, but didn't do too much of that, and I stopped worrying about him fairly quickly, after seeing that his oxygen levels were pretty stable (and also being helped by my lovely friend turning up for a nice chat!).  Eventually I had to give him back to the box, but I felt so much closer to him afterwards and I hope he felt the same!

After this, it was Chris' turn on Saturday, and while I was expressing in the breast pump room, he got kitted up for his first close father-son bonding session.  Sadly, it wasn't to work out so well.  When Adam was placed on Chris' chest he got very stressed and his oxygen saturations dropped dramatically.  Then, when he was given a feed he got more perturbed and started spluttering.  His oxygen saturations dropped more, his heart rate slowed and he changed colour.  He was returned to the incubator but the nurse ended up pulling the emergency buzzer and Adam was given resuscitation from the emergency oxygen mask.  He recovered and was fine a few minutes later, but obviously this scared Chris a lot, and left us both unsure about whether we wanted to do skin-to-skin, or kangaroo care, again while Adam is so small.  It's important to say that while it is lovely to be able to feel close to our son, we are big grown ups (just about) and could cope with not cuddling him if it was a bad thing for his health!  The reason it is such a good thing to do, is because it has been shown that skin-to-skin contact is very beneficial for the baby too, helping them develop better regulation of their heart rate, breathing and temperature regulation.  Obviously the increased parent-child bonding is important too!  Given all this, after he had adjusted well to his new breathing support, and having ascertained that he was having a good day and that the nurse was supportive, we gave it another go today.  I had him first, for about an hour and a half, during which, thankfully, though he was a little unsettled at first he was then pretty calm.  Chris then took over, and kept him there for another hour and a half, during which time Adam was really stable.  So it's been a good day.  We both got a good bit of tiny baby love, and little Adam got three whole hours of big smelly parent love.  We will definitely be trying this all again soon, though we will definitely choose our moments carefully and it'll be a long while before I'll be able to avoid constantly checking his oxygen levels on the monitors.  Anyway check out our tiny bundle of baby below, scaled next to his ginormous parents!

Steps forward

We're back!  Adam's operation went smoothly and he returned from his sojourn to Great Ormond St on Friday.  He had a chest x-ray yesterday which showed that he still had quite a bit of fluid on his lungs so that, combined with the fact that he was still showing sharp fluctuations in his blood saturation and heart rate, meant that they decided to only slightly change his ventilator settings initially.  They then hoped to "aggressively" wean him off the ventilator as he got better.  They meant what they said, and when Chris went in to the hospital today, he had already been extubated and was off the ventilator!!  This was much earlier than we were expecting and was really good news!!!  They actually made the decision to try it, not because he looked that much better and like he didn't need it anymore, but he was being such a wriggler and was pulling at his tube too much so they thought they'd see if he could manage without to it.  Luckily he could!  His breathing is now being supported by the system he was on when he was first born.  It provides positive pressure and extra oxygen into his nose to help keep his airways open (and is attached to a rather fetching cap), but he has to do the actual breathing himself.  He might well get tired and need to go back on the ventilator, and his blood saturations still swing rather dramatically, but it's such a step forward.  It's only a week ago they were giving him CPR when he accidentally extubated himself!

So how's life changed for little Adam? As he doesn't have a tube in his mouth anymore, he can suck his (very mini) dummy, which he seems to like a lot, judging by the vigorous chomping action that occurs when it's in his mouth.  Unfortunately, he also likes grabbing things near his mouth, which rapidly seems to result in the dummy being pulled out, which he doesn't like.  He demonstrates this by getting sad and doing tiny little mewy cries, which he hasn't been able to do when on the ventilator.  Chris was doing a sterling job at keeping the little man happy by holding his dummy in place and providing a finger to be grabbed. Sadly, we eventually had to come home and leave Adam and the dummy to fend for themselves, but not before quite a lot of father-son bonding!  Fingers crossed for much more of the same.  If we're really lucky, and he continues to do OK off the ventilator, maybe we'll actually get to cuddle him sometime this week.  He's almost 4 weeks old, so it'd be so nice to finally get to hold him!

At GOSH, after his operation, aged 31+1 week or 24 days

Today, off the ventilator, aged 31+3 weeks or 26 days

Also today:  Daddy helping Adam keep his dummy in place.
As you see, A is still tiny (~850g) and hasn't grown at all really this week, due to being "nil by mouth" a lot due to transport and surgery.  There's a job for next week!