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!

GOSH...

... or Great Ormond St Hospital for the uninitiated.  Adam was transferred yesterday when a bed suddenly became available.  Before this, he'd had another rollercoaster week.  On Saturday, he was put onto steroids to try and treat the lungs directly.  Despite a big blip in the night, when his heart rate dropped so much he needed CPR, by Sunday, he seemed to be responding well and improving, seeming more stable and needing to inhale lower levels of oxygen to keep his blood saturated.  On Monday, however, he went downhill and seemed really agitated for much of the day, so the doctors chased the referral to GOSH as they thought the steroids weren't working well enough, making fixing the duct more important.  On Tuesday, he seemed better again, but then had another scary moment, this time when I was with him.  As the nurse turned him over to lie on his other side, his blood oxygen dropped steadily and his heart rate fell to under 50 bpm (it's normally well over 100).  Time slowed down as I watched to see if he would recover on his own, but he didn't, the nurses pulled the emergency cord, then suddenly lots of people were running into his nursery, lifting the lid of the incubator and ushering me out of the room, while handing me his little soft monkey.  It seemed much longer than the minute or so it was, standing outside the nursery clutching the monkey, until someone came to tell me that he was OK, they had replaced his ventilation tube and he was recovering well.  It meant that he went back onto higher oxygen and seemed rather distressed for a while, but was basically OK, but it was another reminder of how fragile his state is and how dependent he is on the ventilator for keeping him alive.

This was all a rather stressful experience, so it seemed like a mixed blessing when they told me, just after this, that he was going to GOSH that evening.  While it was clearly important to make him better by whatever means possible, be that steroids, or surgery, or both, he was clearly not very stable, so moving him around London and then cutting him open seemed like a risky business. We waited around nervously for the transport team to arrive, then followed them over to the other side of Bloomsbury to GOSH, where we waited some more while they settled him in. Miraculously, when we got to see him at about half eleven, he seemed remarkably calm.  He was also really calm and settled when we arrived this morning, and stayed like that all day, despite having fairly lengthy scans of his heart and his brain (confirming that he still has a duct that needs fixing, and that his brain looks fine - hurrah).  During these he got cross but, unlike previously when handled and proggled about with, he didn't desaturate (decreasing the oxygen in his blood). He also managed to do some very cute looking around, pulling faces and sucking at his fingers and tube.  This newfound stability could be a random good day, the steroids gradually taking effect, the fact that GOSH are just trying to keep him stable not wean him off high oxygen and ventilator pressures, or that GOSH is just magic.  Maybe he realises, like us, that he's gone from a place where he is one of the sickest patients to one where he is one of the well-est.  His duct operation is really standard for the cardiac surgeons, and currently there are a lot of very sick cardiac patients who aren't stable and who need much more complicated surgery.  In addition to that, there are emergency patients, or intensive care patients who are degenerating, who need surgery very urgently.  Given that, we're lucky that they should be able to fix Adam's duct tomorrow.  It'll be really scary, but kids are flown into GOSH for similar procedures from all over Europe, so the surgeons know their stuff.  Hopefully they'll continue to work their magic and he'll be better for it afterwards.  Go Adam!

P.S.  I should say that during all his lung problems, Adam's been getting on with developing in other ways.  His skin has matured enough that he doesn't have to be in a humidified environment any more, which means he can have soft toys (the monkey and his teddy blankie) in his incubator.  He's grown to an almost-whopping 850g and he's begun pooing of his own accord, partly thanks to being back on the milk (we're very proud).

Adam at 30 + 3 weeks (19 days old), with teddy blankie

Heart Surgery?

Adam's lungs still aren't fixing themselves.  It's even possible that he never had pneumonia and that the lung dysfunction is due to both the under-development of his lungs due to his prematurity and the growth restriction, and too much blood flowing to his lungs, producing irritation and inflammation.  Too much blood is flowing to his lungs because a blood vessel near the top of his heart that normally closes off at birth hasn't in his case - he has a patent ductus arteriosus (PDA).  This will probably close off on its own in due course, but in the mean time, the lung damage might be too severe.  The solution would be to have surgery to clip off this vessel.  This is specialist surgery so would have to be done at Great Ormond Street Hospital, so Adam would be transferred there for a night. This might happen in the early part of next week, or earlier if GOSH have space before then.  The thought of his having such a procedure is so scary, though, clearly, if it sorts him out, then it's worth it.  I don't know yet what are the risks to him of having surgery.  He is so very small and fragile that I can't believe it won't be pretty dangerous.

Adam at 29 + 4 weeks (13 days old)

On the up side, Adam just gets more and more engaging.  He has his eyes really properly open now and looks around (or seems to - who knows what he can actually see!).  He'll also grasp a finger if you put it in his palm and he's still waving his arms and legs around and doing plenty of wriggling.  I've now changed his nappy (with a lot of assistance and reassurance from the nurses) a couple of times and taken his temperature.  As we get to know him better and he starts to feel more and more like our wee son, it's so much more emotional just watching him being so small and vulnerable.  I want to be able to pick him up, cuddle him and make everything OK, but we're a long way off that.  Instead we have to tear ourselves away, say goodbye, leave him in his incubator and come home without him.

Up and down

Man this is hard!  After my last post, Adam's chest infection got worse again.  They had to put him on a different ventilator, at high oxygen levels and at high pressures.  He was on medication to keep his blood pressure up and was barely stable. They warned us that they were doing about all they could to keep his blood gases (oxygen and carbon dioxide) at the right levels.  If he continued to get worse, there wouldn't be anything else they could do.  It was really seriously bad, but luckily he seemed to rally and by yesterday was stable, back on the original ventilator, and seemed to have passed the worst of it.  When we saw him today, he seemed well, though still on quite high pressures and oxygen levels, but getting better.  His eyes are definitely opening properly now.  His chest x-ray looked much improved too.  Hurrah! 

A chat with the consultant brought us back down again, though.  He does seem that he's getting better from the pneumonia, but the damage that it will have done will mean that he will now have chronic lung damage:  he will be dependent on oxygen for much longer, requiring him to stay in hospital beyond his due date and putting him at risk for long-lasting lung problems.  In addition, his body's response to the infection puts him at higher risk of getting white matter damage in his brain, increasing the likelihood of him ending up with neurological problems such as cerebral palsy and cognitive problems.  Finally, but most immediately seriously, his last x-ray also showed an abnormal bowel, so they suspect that he might have developed the really horrible gut disorder I mentioned earlier.  The problem is that he's already on antibiotics, so all they can really do is add in one more antibiotic and keep resting his bowel.  Hopefully this will prevent the disorder developing but at the very least, he won't get any more milk for at least a week.  He'll really need to get the extra line in that gives him nutrition into his blood (they removed it a few days ago as a potential source of his infection) so that he can get enough nutrition as otherwise that deprivation will also cause him a fresh swathe of problems (he's only getting iv glucose at the moment).  Poor little lad.  It's just so scary and overwhelming.  All we can do is keeping it a day at a time, and hope that none of that happens.  But what do we do if it does?

Feeling better?

Just a quick update from the previous post, which was written yesterday but only posted today.  Last night we had another phone call from the hospital (at half midnight).  They had been having lots of trouble keeping Adam's airways clear and his blood pressure was really low. At the point they rang they had adjusted the ventilator pressure and given him dopamine to maintain his blood pressure, which seemed to be working, and changed his antibiotics.  Nevertheless we felt like he might be weakening, requiring more and more intervention to keep him OK.  I didn't sleep too well.  Today, however,he seemed to have got better!  His ventilation was much more stable.  He was still a bit puffy, but less so than yesterday.  Most importantly for us, he was wriggling again, pulling faces, and, best of all, pretty much opened his eyes!  I spent a lot of time just watching him crinkling his face, raising his eyebrows then flashing me tiny glimpses of his dark irises (he's still gurning like a pro). 

Fingers crossed then that he continues to strengthen. The antibiotics need to do their job and clear up all his infections (on his chest as well as his tummy, which I didn't realise until now, but which explains why he's been having problems breathing).  Then we can get him back breathing better and back on the milk - and then he can do growing!

Adam's first week - written yesterday

Adam is one week old today (or 28 weeks and 5 days).  Thank you so much for all your messages wishing him and us luck etc.  He started off doing fine.  He was ventilated for a bit but then was able to breathe on his own, albeit with assistance.  He lost a bit of weight, as expected, due to fluid loss, but started taking milk through a tube to his tummy, which he seemed to tolerate well, so we were hopeful he'd start doing growing soon.  He had jaundice for the first few days so had light therapy, meaning he had a rather fetching eye mask to protect his eyes (which haven't yet opened, as he's so tiny - they normally would at 26 weeks), but his bilirubin levels dropped and have stayed low for a few days so the light and the eye mask have gone. Without the mask, we can see his gorgeous little face, which is capable of some rather incredible gurning expressions.

As the week went on, though, he seemed to be finding it harder to breathe on his own, tiring and stopping on occasion.  Then on Sunday lots of things all seemed to go wrong at the same time.  We got our first phone call from the hospital, to tell us that they were x-raying Adam's bowel as they suspected he had an infection in his tummy.  His tummy was swollen and the doctors thought it might be an infection called necrotizing enterocolitis (NEC), a nasty intestinal disease that can be really horrible and destroy the bowel.   Adam's at particular risk of this because of the growth restriction, as the decreased placental blood flow meant that in the womb he diverted blood from his intestine to protect the brain and heart.  To our relief nothing showed up on the x-ray, but he has developed an infection on his tummy button, which could be the only problem or could be linked to an internal intestinal problem.  As NEC can be so nasty, they put him on more antibiotics and stopped feeding him milk to try to prevent it from developing.  Since Sunday, though, he has seemed ill, being very quiet and still.  In addition, they've had to put him back on the ventilator to breathe for him, and have had a job tweaking the fluids he's being given, the ventilation and the oxygen, to maintain his blood gas levels at the right level.   To further freak us out, reading his notes on Monday revealed that they had also found a cardiac murmur and a "shiny" cerebellum on a cranial ultrasound (which is bad apparently and can indicate the presence of a bleed).

It felt like everything was going wrong for him.  It does now seem a lot better than it did on Monday, though we're not really back to where we were.  Firstly, the cardiac murmur exists, but is very common at his gestational age and should resolve with time.  A second cranial ultrasound found that the cerebellum looked more or less within normal limits, with no sign of a bleed.  The redness on his tummy has decreased, so it seems like at least the external infection may be coming under control (and hopefully there is no internal infection).  He does still seem ill and quiet, and has puffy hands and feet, which may be something to do with the infection, but has a much better pinky colour than he had on Sunday, when apparently in the evening he looked really grey and ill.  So hopefully things are going in the right direction.   What the last few days have shown us, though, is how quickly things can go from looking calm to being really scary.  As everyone has said, life in the neonatal unit is not going to be a smooth ride.  We hope that in a few days Adam will be feeling better, be back on milk and will be treating us to some more of his funky moves.  He might even have his eyes open, as we've caught him opening them up the tiniest crack.

Adam is here!

Adam Peter Hall Bird (or Adam Bird for short) was delivered by a normal caesarean section, at 9:35 am yesterday morning (11/10/11 - a good birthday!).  He weighed in at 1 lb 7oz/ 647g, so a good bit chunkier than we thought he might be, but nevertheless, really tiny.  He's doing well so far, so we're hoping that he keeps on as he's started.  He's a little wriggler and mews little cries like a kitten, which is a good sign that he's a goer, but we don't want him wasting too much energy on all that when he could be doing growing.  We've not been able to pick him up yet, and won't for a couple of weeks, while his skin gets tougher in a humidified atmosphere.  We can touch him, though, and the nurse showed us today how to hold him gently but securely with our hands while he lies in his incubator.  It doesn't really feel like we can do much for him, which is hard, but it's good for him that he has such a good team in the neonatal unit (one nurse to one or two babies).  Family Hall-Bird have been doing what we can, however, by team milk expressing.   There have been only drops so far, but Mum had the technique to get the first ones to come out, and Chris has become an expert at collecting them in a little syringe.  They should start feeding them to Adam today.  Hopefully my milk will actually come in soon and there'll be a bit more to show for it, though, as even if they feed him at the low rate of 0.5ml every 4 hours, I reckon we've got less than 12 hours supply from the first 6 attempts at expressing! 

It's basically gone as well as we could have hoped for.  I'm fine.  It was really good that they managed to do a normal caesarean rather than a classic (more damage, more risks, always need caesarean in future), the operation was early in the day, everything has been a picture of smooth efficiency and most importantly, Adam is doing fine so far.  While it sort of feels like we're waiting for things to go wrong, it's better than dealing with things being wrong.  And as George the consultant obstetrician says, we should take my blood group as a catchphrase: B positive!

D Day is set

Fairly predictably the stress ratchetted up over the course of the week, after relaxed furniture-lugging, but this week we didn't get quite the let off we were hoping for at the scan. We knew that things weren't looking good as the obstetrician took us to a little room after the scan to wait in (also I had been eyeing my tiny belly balefully and realising it hadn't got bigger).  It took the obstetrician a long time to come back, neonatologist in tow, to tell us that, while the blood flow parameters and amniotic fluid levels were stable, the baby has barely grown in the last fortnight.  They think that, as he's not growing, it is now worse for him to stay inside.   Our options are basically to have a caesarean on Monday or Tuesday next week, or to do nothing, and wait for the baby to die in utero, though that could take weeks and if I develop preeclampsia they would have to deliver anyway before that happens, by which stage the baby would be in a worse state.  This isn't much of a choice, so we are going for delivery next week.  The odds for the little one aren't great.  What he has gained in gestational weeks, he hasn't made up for in size.  He's predicted to be 539g/1 lb 3oz, so absolutely tiny and pretty borderline.  The neonatologist reckons there's a 75% chance of survival, and a 30-40% chance of major problems if he survives.  I make that a 45- 53% chance of a good outcome (only minor problems). This was crushing news.  The consultant also looked pretty sad.  For me, it seems to be a question of coming to terms with the situation all over again, grieving for those lost weeks and lost growth that we hoped our baby would get, and that would have improved his chances.  I'm terrified for myself, but also for our child who will have to struggle so hard in this world - at the very least at the beginning, but maybe for much longer.  I'm also really sad I'll only feel him kicking inside me for another four days.  You're not supposed to only be pregnant for 27 weeks.

At the same time, we have no choice in what happens, which does make it easier.  We just have to do what we are told:  have a steroid shot today and tomorrow, take preop meds on Sunday, phone the hospital to see when to go in, go in, be operated on, recover a bit, go and see tiny baby, pump breasts, get very used to the neonatal intensive care unit....  I'm sure it will be differently stressful, but it will become normal in its way, and we will take every day, then week, at a time.  I'm sure I will still periodically crumble, but hopefully we'll be able to keep it together enough to be as useful as we can be.  I should also say that it has meant so much to us to have everyone's support.  There isn't anything you, or us, can do for the baby (all that protein hasn't even helped), but it is really great to know you are thinking of us and wishing us well.  Also, please don't think we want to be left alone - we are likely to be very up for quality time away from the neonatal intensive care unit!  So thank you all so much, and I'll let you know what happens next week.

One more week!

Still here! The scan showed no worsening of the blood flow in the cord and no drop in amniotic fluid levels, so maybe we're stable for the time being?  The baby hadn't grown, but as it has only been 6 days since the last scan, the consultant didn't seem to think that was a problem.  My blood pressure is a little up, but again, he didn't seem to think it was anything to worry about at the moment (preeclampsia often develops as the placental problems accelerate).  At the moment, then, the pressure is off, and I'm feeling much more relaxed. Though obviously the general situation hasn't changed, and 27 weeks is still really early, there's nothing we can do at the moment, and it seems to be impossible to stay totally worried for a really prolonged amount of time.  I'm sure the panic will build over the course of the week, before the next scan, but at the moment it's nice to have another week.  Having seriously upped my protein intake (and consequentially calories), in a probably vain attempt to load up my bloodstream with goodies to make the baby grow, I am certainly getting a bit more of a tummy, and hopefully some of those inches are baby and not just lard!  In the meantime, we are back to the mundane task of clearing some space in the spare room, to allow us to have a load of really disruptive damp-proofing done - cue van hire and furniture removal to Bakewell.  Luckily I obviously have to take it easy so can't be too helpful with carrying heavy stuff, but we have very nice friends who can, and I will try and contribute via the medium of witty banter and brewing of tea.  Hurrah for brief normality!

11 days later...

That Thursday was a really hard day - we were at the absolute limit of deciding whether or not to do a late termination.  We had just those two days from Tuesday to Thursday to come to terms with the diagnosis of severe, early intra-uterine growth restriction (IUGR), to try and understand what it all meant, and to balance the chances of this baby living and doing OK, versus it all going horribly wrong - and defining what "horribly wrong" would be. After a more reassuring chat with the consultant, and an aminocentesis to check for chromosomal abnormalities, which came back negative, we decided that the odds of a good outcome were sufficient that we didn't want to terminate.  Actually reaching the point where termination no longer was an option relieved a lot of the pressure, at least initially.  There was nothing we could do, from then on, except wait and hope that the pregnancy would keep on going for long enough to allow the baby to grow as much as possible and develop as much as possible.  We had another scan on Friday, and while he had grown a little (from 437g/15 oz to 521g/1 lb 2oz) some of the other things they look for to see how he's doing had got a bit worse (amniotic fluid levels, end-diastolic flow in the umbilical artery).

So we're still here, but I have another scan on Thursday where we'll see whether I can go on another week or not (and further weekly scans for as long as possible).  He'll be 26 weeks on Thursday, so I really, really hope that it won't have got worse by then.  He's still so borderline in terms of viability that another couple of weeks could make all the difference, in terms of both survival and all the risks of things going wrong due to prematurity. These risks are massively freaking me out - the huge range of problems he could have, physical, mental or neurological, acute or chronic, severe or mild - all well-documented and all-too accessible in endless scientific articles accessible from UCL's electronic database of medical journals.

Will our son live? If he does, will he be horribly disabled?  Even if he is only mildly affected, how will that change our lives from the one with a "healthy baby" that I'd imagined? Awfully, these seem to be not concerns for the well-being of a little child, but selfish worries about how my life will be more difficult, sad and scary than I had planned.   Worse, it's me, or something about my body, that's causing this all in the first place.  Something, at some point, must have caused the placenta to start to malfunction. What was it?  Could I have done anything to stop it?  Will it happen again?  All the time I am worrying about what will happen to me, I am starving my son of the nutrients he needs to grow and become healthy.

There are positives.  As Chris points out, given the chance, we're going to do our damnedest to make sure that whatever problems our little one has, he gets as much help as possible to overcome them.  He's still there  - we've got past one scan.  May we get past many more before he needs to make an entrance to the outside world.  We're at UCLH, which is good at looking after tiny babies.  We'll get intensive parenting training from the neonatal intensive care unit, and lots of future checkups and care. We're not alone - not only do we have each other, which has been so important and will make sure that we are OK whatever happens, but our families and friends have already been so supportive.  So, fingers crossed!  Hopefully we'll still be here in a week.  Then another one?

So far....

I've decided to publish this - I wasn't going to, but think it might be a useful way to let people know what's going on with us.


I don't know exactly why I'm doing this.  I think maybe it might help me get my head around what's going on, and to process it all.  I wrote a single edition of a blog that I never published when my grandfather died and that helped a bit.  It's now languishing on an unused page of myspace or something.

Anyway, today I'm 24 weeks pregnant, with a little boy.  Two days ago we had an extra scan, and learned that our baby is severely growth retarded, down at under the 3rd percentile of weights for his age.  I wasn't expecting anything to be wrong.  We'd watched the scan pictures with excitement at seeing our little one again, his face, arms, tiny hands, brain...  I thought they'd offered the extra scan as they had mentioned at the 20 week scan that the nasal bone was short and that increased the risk of Down's.  I'd looked rather worried and I thought they'd offered the extra scan to reassure me.  Maybe they had.  The consultant and midwife certainly were surpised when our small baby (who we thought was just a bit younger than the dates) was still really small and, while he had grown, he was now still smaller compared with others of his gestational age.  I just thought that this meant he was even younger than we'd thought  - I got pregnant just after coming off the pill so didn't have any useful dates of last menstruation to give me any dates. As they continued to explain, gradually Chris and I realised the truth  - that it wasn't OK, that he was really very tiny and wasn't getting enough energy from me, so couldn't grow correctly, and probably never had.  Worse still, the problem would be exacerbated in the coming weeks, as he needed to grow more and more but wouldn't be able to get this nutrition from the failing placenta, so would become more and more compromised.  My baby is small and getting sicker.  He will need to be born at some point in the next 8 weeks, which will make him between 24 and 32 weeks of gestation at birth, and he will be really small for his age.  I'm really scared.