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