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.