Progress!?

Whisper it softly, cross fingers and touch wood, but since my rather low post on Mothers' Day, our little man has made amazing progress! It started, for the technically minded among you, with the consultant reassessing the oxygen saturation levels Adam needs to maintain. Adam's breathing support is adjusted all the time to make sure that the oxygen saturation of his blood remains within certain limits. If his oxygen saturation drops, he is given more support and if it's really high, his breathing support is decreased. This is done over the short term by changing the concentration of oxygen in the air he's breathing, or over the longer term by changing the flow rate of air being delivered (higher flow is more support). For the last few weeks, Adam has been given enough support so that he reaches oxygen saturation levels of 95% and above, as he was thought to need these levels to grow properly. Last weekend, he was needing about 41% oxygen at 5 litres/min to get these saturation levels (Just after Christmas, his peak requirements on high flow oxygen were 60% oxygen at 8 litres/min).  Last Monday, however, the consultant reported that there were new guidelines. A study had been done to look at babies' development at different oxygen saturation levels and found that there was no advantage to having levels of more than 95%, compared with 88-95%.  Essentially, this meant that the goal posts were being moved.  Adam now needed to only reach saturations of 88-95% and therefore the amount of support he needed to receive decreased.  Immediately, the concentration of oxygen he was breathing and the flow rate of this oxygen decreased. He coped fine with this and over the course of the week, his flow dropped from 5 to 4 to 3 and then to 2.5, while his oxygen requirements dropped below 40%.  Then, yesterday, he was moved onto "low flow oxygen" which is the sort of supply that you can have at home!  He did really well on low flow and seems stable at a rate of 300 ml (or ccs)/min.  This will have to decrease a bit before we can take him home, but it's in the right ball park!!  It feels like the endgame might be starting!  There'll be lots of tests to see how he copes with e.g. sitting, car seats, sleeping, being off oxygen for a tiny bit (in case all the equipment breaks), we still need to get his feeding regime working well, and he needs to get his gastrostomy tube changed from the current temporary latex one to a "button" which I don't really understand yet but apparently will make the feeds much easier.   It'll still take weeks to get him through these challenges, but they seem manageable and exciting.  Now he's on low flow we also might be able to start walking him around attached to a small oxygen cylinder.  First we'll get to take him around the Neonatal Unit (not that exciting) but then, when we're good at that, we should be able to take him out of the hospital for a short walk (very exciting!!).  And then, eventually, but this century, we will get to have him home!

P.S.  Aargh.  It's still happening, this roller coaster.  I thought maybe we'd got off it.  Adam's blood sugar levels, which are measured periodically, are going haywire.  He had a couple of low blood sugar tests last week, but we thought that was just something to do with trying to get him up to having feeds every three hours, instead of two (hence the challenge mentioned above about getting his regime working).  Last night, however, he had another low one, followed by a really high one.  He is totally asymptomatic for anything, but erratic blood sugar can be a sign of infection, so he was moved last night back to intensive care from high dependency.  They phoned us up at home to tell us (the first phone call from the hospital for ages about Adam's health, rather than just requests for more milk or baby gros), which worried us but by this morning all seemed fine.  He was being moved back to high dependency as I arrived and seemed to have had a good time in intensive care, lapping up all the attention from nurses who hadn't looked after him for ages and couldn't get over how big and alert he's become.  He had a very lovely breast feed and a nap, but then later had a very low blood sugar reading.  The consultants are concerned enough to order a blood screen for various hormones and to contact endocrinologists at Great Ormond St to try and figure out what's going on.  They say it is probably his body being confused by having part continuous feeds (overnight) and part bolus feeds every three hours (during the day) but they seem really perplexed and that in itself is a worry.  Fingers crossed, touch wood etc. etc. it will turn out to be nothing, but my day ended up with me crying in the tea room after too much time holding Adam down as he screamed and screamed and the registrars jabbed and stabbed at him to put cannula after cannula in (he needs a cannula for i.v. antibiotics prescribed after that high sugar but keeps losing them by bashing his hands and feet on stuff), and to take bloods and more bloods, for all those hormone screens.  After all that screaming, a test of his blood gases suggested his breathing wasn't working well enough, and there is now a possibility that he'll be moved backwards onto the high flow oxygen again.  Hopefully, a repeat test after a couple of hours of calm time with Aunty Rosemary will sort out the blood gases and the sugar issue will sort itself out... but really?  Can he get a break, please?  It's so nice stuff going well and I want more of that and not this horrid stress.  Meanwhile I am going to belatedly celebrate Anna's birthday in sunny Brighton and remember that Adam is behaving as normal and doesn't know he has weird blood sugar.  Also, handily, his memory is rubbish so far and he won't remember either that Mummy held him down while the doctors hurt him (bad Mummy) or then ran off and wasn't there to comfort him while the doctors hurt him (bad Mummy). 

P.P.S. His later gas and sugar tests were fine. He is asleep and a good nurse is looking after him tonight.  We had yummy food and wine with lovely Anna.  I think it will all be OK.  Just so long as those hormone tests don't show anything weird.  Incidentally, Adam did all that big breathing improving while his gastrostomy wound was infected with staphylococcus and he had a tummy bug, which goes to show what a little hero he is. Go monkey! 

 

See below for a series of photos showing different ways of keeping Adam's dummy in and, therefore, Adam asleep. Only the last one works!

Roll of sheet

Sophie

Monkey's bum

Aunty Rosemary!

 

Mothers' Day

My first mothers' day as a mother seems like a good opportunity to try and stand back from all this hospital craziness and evaluate where we have got to.  It is 159 days since Adam was born (or 5 months and 7 days, or 22 + 4 weeks) and 10 weeks since his due date (or 73 days or 2 months, 13 days - don't you love internet calculators!).  So it's approaching the day when Adam will have spent more of his time as a term baby than as a premmie, though a little while off him having spent as long out of the womb as in it.  He weighs a whopping 3.35 kg, or just over 7 pounds, which is huge for him (over 5 times his birth weight), though way down on the tiny scale compared to other babies his age.  He has had three operations, on his heart, eyes and tummy (PDA ligation, laser treatment for retinopathy and Nissen's fundoplication with gastrostomy insertion for reflux). He has spent 39 days on a ventilator, 2 of them on a high frequency oscillator, 18 days on CPAP and 102 days on high flow oxygen to support his breathing. He's had pneumonia, a staphylococcus infection and suspected NEC (nasty gut disorder) and countless blood transfusions.  Incredibly, after all that he is doing roughly what you might expect a 10 week old ex-premmie to be doing, I think. He is, it goes without saying, a little star, and beautiful.  I am so very, very proud of him! 

But, we are still here, and he still needs a lot of breathing support (5 l/min humidified oxygen at 41%, if any one's counting). The reflux op has made him more stable, more comfortable, and has allowed him a small decrease in flow rate, but we haven't seen any further improvements (his oxygen has slipped back up since my last post), so we're back to waiting for Adam's lungs to grow, while he isn't piling on the pounds as fast as we'd hoped (his growth has got a bit stuck after an exciting post-op growth spurt). These five months have been so long but we will be here for a long time yet.  I am sick of hospitals, while at the same time, am thoroughly institutionalised.  Mostly, though, I am sick of being so worried. I know that to a certain extent, that's just being a parent, and I am heartily glad that we are past the acute phase of the early days, when the next life-endangering crisis was always round the next corner. The issues we have now are here for the long term though, with still some more that could come up and bite us. Breathing, eating and growing are our biggies, Adam's in terms of doing them, and mine in terms of worrying about them, along with developmental difficulties that could come along because of the biggies. I'm impatient for a time when we can measure Adam's progress down the oxygen concentrations and up the growth charts, rather than the opposite.  I worry that he's not going to be able to do anything but token play-breastfeeding before he's weaned (though is this just me being selfish?), that because his lungs can't handle the energy and coordination to properly feed by mouth, we're storing up a load of feeding problems for the future, and that the paucity of his environment will hamper his development.  I worry that being tiny and sick is going to make his life really hard and that seems so cruel. 

But just writing all of that makes me realise how lucky we are, in so many respects.  Adam will get better and he will get bigger, it just will take a while.  He has a whole team of people to help him get there with as little collateral damage as possible: a physiotherapist, a play therapist, speech and language therapists, an occupational therapist, not to mention all the doctors and nurses.  We need to work hard to make sure that his life is as varied and fulfilling as possible within the confines of his cot space, but we can do this, and this will help.  Mostly this "work" involves play and as the only term baby currently in the Neonatal Unit, so the only baby actually supposed to be playing, he is doing really well out of the play therapist, with a bunch of rattles and a cool new toy rail to go on his bouncy chair.  We will get there and patience is a virtue, right?

Finally, it is also an appropriate time for some musings on motherhood and some heartfelt thanks.  It goes without saying that it's hard being a mother in the Neonatal Unit.  In some respects it is the antithesis of motherhood, where  babies in plastic boxes are isolated from frightened women, who have their milk yanked out of them by machines in a windowless room, and where parenting takes place secondary to medical procedures and under the supervision of numerous professionals.  At the same time, though, it is an amazing place where the emotions of motherhood occur for the first time, and to a certain degree are heightened by the environment - the fear of loss makes the first cuddle more precious; the endless pumping makes the first breast feed more magical.  Bonds are formed between women whose disparate lives in the outside world remain largely unknown and unspoken of, but who share experiences of motherhood in extremis over tea and breast pumping. In a sense, too,  the whole unit is dedicated to supporting motherhood (and fatherhood), helping us to bond with our babies and to help them through their difficult starts in life.   This care is free, so the whole of society is actually supporting us - our babies, the weakest and most vulnerable people in our society are being cared for by everyone, so that we can be families now and in the future, and that's a pretty incredible thing!  So thank you for paying your taxes!  Also thank you for all your continued best wishes.  We have been dreadful at keeping in touch and at thanking people for gifts and messages, but we are hugely grateful for everything you have sent, verbal and physical.  We can't wait for you all to meet our little monkey, who smiles more and more now (though still likes a good bit of performance before he'll grace you with one) and hope it won't be the too distant future before he's ready!  Finally, finally I want to send the biggest thanks of all to my own special, amazing mum, for her constant support, her superhuman efforts to be with us as much as physically possible, and just for caring so much for me and for my little boy.

 

Adam had kindly left this lovely card on his trolley when I got in today.

Soft focus baby, thanks to his spot by the window, and the start of spring.

Smiley baby with a gastrostomy!  Also, spot the cot rails in the background - yes, Adam is in a real cot now!

Look what nice things the lovely play therapist brought me!

Zzzz.  Maybe I'm doing growing?

 

Adam in bouncy chair

Reflux surgery - a question of timing

It's almost a month since I wrote to say that Adam looked like he needed surgery to stop him refluxing milk into his lungs, so that his lungs could recover. Sorry to take so long, but it's been another rollercoaster of a month.  The surgeon from Great Ormond St agreed that this op (called Nissen's fundoplication) needed doing and that it should be done within a fortnight.  Great!  Our baby was about to get that important step forward out of the vicious cycle stopping him from recovering.  The next week, however, the surgeon reported that his next available slot was in April. I was devastated.  How could we wait so long until we'd have any hope Adam would start getting better? All the while, the milk he was aspirating into his lungs was making him prone to pneumonia, risking a major step backwards.  I normally manage to hold myself together pretty well in the Neonatal Unit, but spent the next few hours repeatedly dissolving into tears, holding Adam to me and weeping into his fuzzy little head.  (That sounds rather histrionic, but I did it quite discreetly, and would have just felt I'd recovered when another kindly nurse would ask how he was doing, and start me off again.)  I don't know whether it was because I was upset, because of his clinical need or, I expect, a bit of both, but the consultant at UCLH phoned Great Ormond St Hospital (GOSH), words were had, and by the afternoon GOSH had squeezed Adam onto a surgical list that Friday afternoon!  Hurrah!  That lunchtime, he was all ready to go, having had two cannulae inserted and having been moved onto the breathing apparatus that can be used in the ambulance.  Then word came that they had needed his cot in the Neonatal Intensive Care Unit at GOSH for an emergency, so they had to cancel his surgery slot.  The rollercoaster continued - we were back to square one.

A frustrating fortnight followed, where we waited for cot space at GOSH and Adam's oxygen requirements slowly slipped upwards (to 45%).  I did a marvellous job hassling UCLH and UCLH did a marvellous job hassling GOSH until a cot space opened up two weeks ago.  We were finally transferred two weeks ago this Friday and Adam was placed on the emergency surgery list.  Despite being first on the list for surgery at the start of each day, he wasn't in a life-threatening condition, so kept being bumped down the list as real emergencies occurred.  This was totally understandable, though I felt that there could have been better communication between the surgical teams and the NICU; when they had decided to operate on someone else they could have let NICU know, so we didn't think they might be coming any moment, for about 4 hours, and maybe Adam wouldn't have spent so long nil by mouth, only to be eventually postponed for another day.  It was getting to the point where they were talking about sending us back to UCLH until a space could be found on an elective list (in April?!) and I was considering how I would chain myself and Adam to the walls to stop them being able to move us, when finally, a week ago last Monday, they decided today was the day, Adam was sedated, intubated (had a tube inserted down his throat and was artificially ventilated) and he was ready to go.  Then the surgeons checked his blood tests from two days before and discovered that his blood wasn't clotting properly.  The blood test needed redoing to check whether he'd need clotting products, and would take an hour or so.  I was furious, as they'd had two days to check the results, and now it looked like he could miss his slot again.  I had visions of having to go back to UCLH, after all this, with no operation, and having to go through it all again.  Luckily, the fact that Adam had already been intubated meant that they were much less likely to simply bump him off the list for that day, so belatedly he was taken down to surgery.  I went out for a walk and a coffee, feeling rather more emotionally fragile after the extra wait, and suddenly feeling unsure that cutting my baby's tummy open was really something I wanted to happen.

It went very smoothly.  They managed to do it laprascopically (keyhole) rather than opening him up with a big cut, and it took less time than they thought it might.  After he came out of surgery, they kept him sedated and ventilated for another day before extubating him off the ventilator early on Wednesday, at which point they were ready to send him back to UCLH, except now UCLH had no space.  We were eventually transferred back on Tuesday, but this time the waiting was not stressful at all.  Adam could recover just as well at GOSH as UCLH.  With adequate pain relief he has been fine.  He has four little cuts in his tummy, like the four points of a compass, and, from the middle, a tube coming out of his stomach (a gastrostomy).   This is what he'll be fed through until he can establish full oral feeds.  After another day, his tummy and gut seemed to be working properly, but the hole in his tummy holding the tube is still leaking a bit, and has made the hole in his skin rather raw.  This will heal over the next few weeks, after which they'll put a smaller tube in, which will be easier to manage.  Until it heals a bit more, he is being fed continuously, rather than in larger amounts every couple of hours, to reduce leakage of the feed out of the stomach.  He can still have a go at breast feeding though, while this is happening, which he is doing with varying success, possibly depending on how hungry he is at the time.  So, now we're just waiting to see if the surgery will enable his lungs to recover.  He's already on slightly less oxygen (35%) and a slightly lower flow rate (6 l/min), which is promising, but we now need to see if these numbers keep moving in the right direction.  In the meantime, he is still mostly just getting on with being a baby, 8 weeks corrected age today, weighing 2.8 kg (6 lb 3oz).  He has learnt that he likes being cuddled, being upright and looking at stuff, (including me, hurrah!), and doesn't like being ignored and lying in a cot.  He is a little less keen on the dummy as a soothing device and more keen on being jiggled.  So the next big question is whether any of those lovely smiles he has just started doing are real, and how many are just wind?!

Ready to go to GOSH - the first time.

Recovering from surgery, with gastrostomy tube in full view.

Much more awake, but still a bit on the puffy side.

Socialising with Mummy, in my lovely new baby gro (thank you LR - black and white stripes were much appreciated!).

Monkey!!