Sunday, 4 March 2012
Thursday, 1 March 2012
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?!
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?!
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| Ready to go to GOSH - the first time. |
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| Recovering from surgery, with gastrostomy tube in full view. |
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| Much more awake, but still a bit on the puffy side. |
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| Socialising with Mummy, in my lovely new baby gro (thank you LR - black and white stripes were much appreciated!). |
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| Monkey!! |
Thursday, 2 February 2012
Eyes improving, but another op on the horizon.
Adam's corrected age is now 4 weeks. It's 16 weeks since he was born and he weighs 2.3 kg or 5 lb. Our lovely mini-man's eyes are slowly improving after his surgery, but he still needs high flow rates of humidified 40% oxygen-containing air to survive. When I look back to my previous blog entry, I see he is a bit bigger and on slightly lower oxygen than he was 3 weeks ago, but he now seems pretty stuck at this oxygen level and weight. He's using so much energy to breathe that weight gain is hard and we need to break this vicious cycle to allow him to grow stronger and get new lung tissue. Like many babies, especially premature ones, he refluxes, but as well as causing him discomfort, the doctors think he is aspirating some of the refluxed milk into his lungs, worsening their condition. Unfortunately, this reflux isn't considerably improved by medical treatment (including gaviscon) and he has demonstrated this while having a barium meal and being x-rayed as well as by coughing and having milk coming out of his mouth. These coughs also often cause his heart to slow and his oxygen saturation to decrease a lot, so are doubly bad. In addition, the gaviscon thickens milk too much to be able to then add extra calories to my breast milk (which he is still taking through a tube - he can suck well but gets tired too quickly to take a full feed from the breast). The decrease in calories caused by the reflux treatment is therefore stalling Adam's growth, contributing to the vicious cycle rather than breaking it. So what to do? The doctors suggest a surgical procedure called fundoplication, where part of the stomach is brought up around the oesophagus so that when the stomach is full, it reinforces the stomach valve so that it doesn't open and allow milk to reflux up the oesophagus. Surgery would be keyhole, and only take a couple of days to recover from, but I still have loads of questions in terms of the improvement we could expect, long term effects of the surgery etc. The surgeon is coming to see Adam today, so I should be able to get answers, but especially since he started having these coughing and desaturation episodes, I feel something needs to change. I just hope it happens quickly and works. At the moment we are stuck in the hospital, a static fixture amidst a blur of other babies rushing past us towards home. Adam is going to be a sick, little baby for sometime yet, but I want to be able to see the end and I can't yet.
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| Guess how old I am today? |
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| Monkey! |
Friday, 13 January 2012
Growing, drifting and eyes
It's been a while and a busy 3 weeks or so. Adam had his first Christmas, and was a very lucky boy, receiving lots of lovely things from many people, including a teddy bear knitted by the Neonatal Unit pharmacist's mum! On 5th January, he reached term, weighing just under 2 kg (4lb 4oz). He's now in the strange situation of being 1 week old (corrected age) and 13 weeks old (chronological age). He's becoming progressively more alert, gazing around and looking at his new mobile, when we put it above his cot. Being in a cot, it's much easier to get him out for a cuddle, or just to soothe him in situ, which has been lovely, and made us feel much more able to help him, probably also as he responds better to touch than he did when we was very premature. We've done some good breastfeeding practice - encouraging him to suck and explore an "expressed" breast, because as he's not so hot at breathing yet, it would likely be a bit much for him to have to deal with too much swallowing. He's always been quite keen on sucking, and breasts are no exception, though he can look rather wide-eyed and overwhelmed, being somewhat dwarfed by them. Entertainingly, he's often seen by speech and language therapists, who deal with breastfeeding, guidance for minimising reflux and providing the right level of developmental stimulation, rather than precocious conversation skills! He has also been assessed by an occupational therapist who seemed to think he did ok at waving his arms, legs and head around in a mildly co-ordinated manner and marked him as "moderate" at lots of things newborns are supposed to do, like looking at faces, orienting to a rattle and knowing when he's had enough. This last skill she marked as his special strength, which I feel is slightly damning with faint praise, but nevertheless she seemed satisfied with him. He had his first bath at night to try and settle him, followed a week later by his first bath by us, which he seemed to enjoy, though he had the same expression on his face as he often gets after trying breastfeeding (see pic).
So all in all, developmentally he seems to be coming along ok, and is certainly becoming an ever more lovely little man. Health-wise, however, he still has some big challenges to overcome. Since coming off the ventilator and steroids, his oxygen requirements continued to drift upwards, hitting 60% last week. They therefore took him off Optiflow (high flow oxygen through a nasal cannula) and put him back onto CPAP (squishy face mask machine giving higher pressure support) for a few days. Maybe thanks to this little rest and maybe due to being given diuretics to get rid of excess fluid on his lungs, he moved back onto high flow oxygen and the oxygen requirements have decreased to around 50%. This is still high, however, and it will still take him a long time to get better. We had a long chat with one of the consultants this week, where they told us the various things they will do now that he is term and still sick, including a special contrast x-ray to check whether he is refluxing into his lungs, making them worse and it hard to recover, something that might need treating surgically. They also mentioned for the first time that, if he continues to make slow progress, eventually he might need a tracheostomy (making a hole in the windpipe to securely fix him to his breathing support). He could come home with a "trachy" and, indeed, the reason for doing it would be to give him a more normal life, but we'd need to be trained on suctioning his tubes and he'd need to always be with someone trained to do this. Along with being a very scary prospect, this also has several implications in the longer term, for the viability of childcare and might also mean we'd need to get (employ?) night support so we could ever get some sleep. Needless to say we hope he doen't need one and gets better on his own, with growing and/or by medical treatment of his reflux.
The more urgent health complication Adam has developed involves his eyes. Since about 32 weeks, he's had scans every week to test for retinopathy of prematurity, a disruption of blood vessel growth in the retina that is caused by the changing oxygen concentrations experienced by the eye following premature birth and which is exacerbated by the administration of high oxygen concentrations such as Adam has needed for his chronic lung disease. He'd been bobbling along at stage 1 of the disease, which most babies get and which most spontaneously recover from, but has since progressed to the extent that they need to treat him to stop him from going blind. They do this using laser surgery to destroy the peripheral retina, so it stops producing factors that produce abnormal blood vessel growth. Apparently it works in about 85% of eyes and he needs both eyes doing, giving him a 72% chance of it working in both eyes. While it's good that it will probably work, it will increase the chance he will need glasses (not such a a biggie, but there's needing glasses and needing glasses, and it's hard to find out how myopic the treatment and/or the disease might leave him), and the chances of it not working, leaving him visually impaired or blind seem horribly high. It seems so tragic that we know his vision is in danger, while he can see now, and is just starting to be really interested in looking at stuff. Still, it's happened and now it has it needs sorting, so hopefully the surgery will work, it'll be sorted, and Adam can get on with being him. He's having it done today. He'll be ventilated, sedated and paralysed, sent to Homerton Hospital for the procedure and then come back to the ICU at UCLH to be taken off the ventilator and recover. We'll know whether it's worked after a week or two. All fingers crossed!
So all in all, developmentally he seems to be coming along ok, and is certainly becoming an ever more lovely little man. Health-wise, however, he still has some big challenges to overcome. Since coming off the ventilator and steroids, his oxygen requirements continued to drift upwards, hitting 60% last week. They therefore took him off Optiflow (high flow oxygen through a nasal cannula) and put him back onto CPAP (squishy face mask machine giving higher pressure support) for a few days. Maybe thanks to this little rest and maybe due to being given diuretics to get rid of excess fluid on his lungs, he moved back onto high flow oxygen and the oxygen requirements have decreased to around 50%. This is still high, however, and it will still take him a long time to get better. We had a long chat with one of the consultants this week, where they told us the various things they will do now that he is term and still sick, including a special contrast x-ray to check whether he is refluxing into his lungs, making them worse and it hard to recover, something that might need treating surgically. They also mentioned for the first time that, if he continues to make slow progress, eventually he might need a tracheostomy (making a hole in the windpipe to securely fix him to his breathing support). He could come home with a "trachy" and, indeed, the reason for doing it would be to give him a more normal life, but we'd need to be trained on suctioning his tubes and he'd need to always be with someone trained to do this. Along with being a very scary prospect, this also has several implications in the longer term, for the viability of childcare and might also mean we'd need to get (employ?) night support so we could ever get some sleep. Needless to say we hope he doen't need one and gets better on his own, with growing and/or by medical treatment of his reflux.
The more urgent health complication Adam has developed involves his eyes. Since about 32 weeks, he's had scans every week to test for retinopathy of prematurity, a disruption of blood vessel growth in the retina that is caused by the changing oxygen concentrations experienced by the eye following premature birth and which is exacerbated by the administration of high oxygen concentrations such as Adam has needed for his chronic lung disease. He'd been bobbling along at stage 1 of the disease, which most babies get and which most spontaneously recover from, but has since progressed to the extent that they need to treat him to stop him from going blind. They do this using laser surgery to destroy the peripheral retina, so it stops producing factors that produce abnormal blood vessel growth. Apparently it works in about 85% of eyes and he needs both eyes doing, giving him a 72% chance of it working in both eyes. While it's good that it will probably work, it will increase the chance he will need glasses (not such a a biggie, but there's needing glasses and needing glasses, and it's hard to find out how myopic the treatment and/or the disease might leave him), and the chances of it not working, leaving him visually impaired or blind seem horribly high. It seems so tragic that we know his vision is in danger, while he can see now, and is just starting to be really interested in looking at stuff. Still, it's happened and now it has it needs sorting, so hopefully the surgery will work, it'll be sorted, and Adam can get on with being him. He's having it done today. He'll be ventilated, sedated and paralysed, sent to Homerton Hospital for the procedure and then come back to the ICU at UCLH to be taken off the ventilator and recover. We'll know whether it's worked after a week or two. All fingers crossed!
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| Adam on Christmas Day, aged 38 weeks |
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| with his new mobile, aged 39 weeks and on CPAP |
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| Our lovely boy, now 40 weeks/ 0 weeks/ term! |
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| First bath with Daddy, almost 41 weeks/ 1 week old |
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| "That blew me away!" |
Friday, 23 December 2011
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
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
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| Clothes! |
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| Cot! |
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| Cuddles! |
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| Dummy! |
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| Zzzzzz.... |
Monday, 12 December 2011
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
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
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| Back on ventilator, with monkey placed in Adam's line of sight - but it looks like he's looking at it, doesn't it! |
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| First cuddle for two weeks, chomping at Daddy's finger |
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| After the cuddle and wide awake, looking a tad like a wee frog. |
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| A few minutes later, on Optiflow. Hurrah! |
Friday, 2 December 2011
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.
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