Hello friends!
Arthur has developed a condition called Laryngomalacia, defined by Wikipedia thus -
Laryngomalacia (literally, "soft larynx") is the commonest cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction.
Essentially what it means is that Arthur now breathes with a very loud wheeze. He does this all the time, apart from when he's feeding, drowsy or asleep. Apparently it doesn't hurt him as it's just his larynx moving as he breathes, but it sounds very much like he's gasping for breath. It's not dangerous, and therefore doctors rarely offer any treatment. It comes on typically between 6 and 8 weeks (Arthur was 7 weeks when it started) and tends to go away by the time the child is 2 years old.
Let's face it, given that he's at high risk of developing both hydrocephalus and kidney damage, you wouldn't have thought harmless noisy breathing would be much of an issue. But it's really getting me down. Laryngomalacia isn't at all related to spina bifida, so I'm inclined to think "hang on, this isn't fair, haven't we got enough to deal with?" but that's just selfish and I know it.
The one nice thing (if there is a nice thing...) about spina bifida is that it isn't obvious. This sounds slightly odd coming from me, because I'm not ashamed of his disability, but hear me out... It's been wonderful to just be able to walk round town and for people in shops to say "oh what a lovely baby." And I get into a bit of a conversation with them and don't even have to mention that he's disabled. Now people tend to say "oh dear... is he ok?" and the conversation is completely different.
What we're really worried about is church.
Last Friday Arthur threw a huge wobbly in church (screaming, not wheezing) and Paul had to take him outside. Having to take a crying baby outside is just one of the realities of taking a baby to church, and it's fine. But Arthur now wheezes for much of the time he is awake and it's very loud - Paul and I sometimes struggle to have a conversation over it. Church is such a difficult one because, ideally, everyone should be able to go to church. After all, we wouldn't ban people with learning difficulties who make spontaneous noises.
But the reality is that people like silence in church. It's about finding peace, and we often like quiet to do that. A child who screams and is swiftly taken out by a parent is one thing. A child who wheezes loudly with every in-breath is another. And even if people say they don't mind, it stresses me out. that he's being so disruptive
I'm not sure if I'm going to take him to College Eucharist tonight or leave him here with Paul. Depends if he's asleep I suppose.
Wednesday, 10 October 2012
Tuesday, 2 October 2012
Morning has Broken
It's 6am and I'm blogging. Yup...
His Lordship has lately decided that 5.30am is the time he'd like his breakfast (Arthur, not Paul.) Admittedly it beats 3am or 4am, but at this time of morning there's really no point in going back to bed before morning prayer, so I'm having half-an-hour of computer time and am spending it writing a blog.
So, term has started again, although you'd never know it from my - ahem - busy schedule. I have decided not to do any optional lectures this year,as I think it's probably far more important I spend time with Arthur in these formative months than sit in lots of lectures. Therefore, my schedule consists of a half-hour preaching workshop on a Monday and an hour-and-a-half placement presentation on a Friday. Plus an hour of College Group on a Wednesday and morning/evening prayer.
Actually, it's really nice to have a little bit of a routine (morning/evening prayer and meals) but enough to be manageable. It feels like everything has fallen into routine of late, including Arthur's care.
The catheters have continued to be extremely stressful, and I admit I've had quite a few down days thinking about them. The thing is, getting them wrong and allowing large amounts to build up in the bladder is extremely dangerous - kidney failure is the biggest killer of spina bifida children, or so I'm told - so every time we have a big reading I throw a bit of a wobbly. But I think we've got it cracked now, as we've worked out that if we cath him immediately before a feed and again precisely 1 hour after the feed the volumes stay below 50ml. We'd prefer 40ml, but 50ml is ok.
We've also recently acquired some new overnight catheters which are hideously complicated and involve snapping a glass vial and injecting purified water into a balloon which expands in the bladder. Complicated, but at least they stay in overnight and don't fall out like the old ones did.
I'm feeling weirdly guilty about how much we're costing the NHS. His catheters alone cost £15 per day (£5,475 per year). Of course he's worth it, it just feels odd being so reliant. Paul reminds me that the British taxpayer is probably more worried about their money supporting chain-smokers with lung problems than they are with supporting a little baby with needs. I think I'll just try not to think about it.
Other concerns include feeding (have switched to formula due to catheter 'what goes in must come out' scenario, which is guilt-inducing but has made me more sane), a dramatic wheeze and a lazy eye. All in a day's work...
Still, on the good side, Arthur is now tracking objects with his eyes and smiling at Mummy, Daddy and his Red Cow (yay!) so developmentally he's spot on. It's so wonderful to see him responding to stuff.
Today I've really got to start reading for my dissertation. I handed in my African essay on Friday, so starting the dissertation proposal is top priority. I loved writing my undergrad dissertation - it's great to be able to really get into a subject - so I'm looking forward to starting this one. I also have to meet with my tutor and agree how many evening prayers a week I'll be able to attend. Late afternoon is Arthur's scrotty time, so hopefully I won't be expected to go to all of them. I'd feel a bit bad about letting Paul cope with the screaming every single day.
Well, it's probably time for me to get myself into some sort of presentable state for morning prayer. Having consumed his breakfast his Lordship is, of course, asleep again. Hard life being a baby...
His Lordship has lately decided that 5.30am is the time he'd like his breakfast (Arthur, not Paul.) Admittedly it beats 3am or 4am, but at this time of morning there's really no point in going back to bed before morning prayer, so I'm having half-an-hour of computer time and am spending it writing a blog.
So, term has started again, although you'd never know it from my - ahem - busy schedule. I have decided not to do any optional lectures this year,as I think it's probably far more important I spend time with Arthur in these formative months than sit in lots of lectures. Therefore, my schedule consists of a half-hour preaching workshop on a Monday and an hour-and-a-half placement presentation on a Friday. Plus an hour of College Group on a Wednesday and morning/evening prayer.
Actually, it's really nice to have a little bit of a routine (morning/evening prayer and meals) but enough to be manageable. It feels like everything has fallen into routine of late, including Arthur's care.
The catheters have continued to be extremely stressful, and I admit I've had quite a few down days thinking about them. The thing is, getting them wrong and allowing large amounts to build up in the bladder is extremely dangerous - kidney failure is the biggest killer of spina bifida children, or so I'm told - so every time we have a big reading I throw a bit of a wobbly. But I think we've got it cracked now, as we've worked out that if we cath him immediately before a feed and again precisely 1 hour after the feed the volumes stay below 50ml. We'd prefer 40ml, but 50ml is ok.
We've also recently acquired some new overnight catheters which are hideously complicated and involve snapping a glass vial and injecting purified water into a balloon which expands in the bladder. Complicated, but at least they stay in overnight and don't fall out like the old ones did.
I'm feeling weirdly guilty about how much we're costing the NHS. His catheters alone cost £15 per day (£5,475 per year). Of course he's worth it, it just feels odd being so reliant. Paul reminds me that the British taxpayer is probably more worried about their money supporting chain-smokers with lung problems than they are with supporting a little baby with needs. I think I'll just try not to think about it.
Other concerns include feeding (have switched to formula due to catheter 'what goes in must come out' scenario, which is guilt-inducing but has made me more sane), a dramatic wheeze and a lazy eye. All in a day's work...
Still, on the good side, Arthur is now tracking objects with his eyes and smiling at Mummy, Daddy and his Red Cow (yay!) so developmentally he's spot on. It's so wonderful to see him responding to stuff.
Today I've really got to start reading for my dissertation. I handed in my African essay on Friday, so starting the dissertation proposal is top priority. I loved writing my undergrad dissertation - it's great to be able to really get into a subject - so I'm looking forward to starting this one. I also have to meet with my tutor and agree how many evening prayers a week I'll be able to attend. Late afternoon is Arthur's scrotty time, so hopefully I won't be expected to go to all of them. I'd feel a bit bad about letting Paul cope with the screaming every single day.
Well, it's probably time for me to get myself into some sort of presentable state for morning prayer. Having consumed his breakfast his Lordship is, of course, asleep again. Hard life being a baby...
Sunday, 2 September 2012
A Seaside Parish
Good news folks! My Curacy is officially sorted. Actually, that's a lie, it's not 'officially' sorted until I sign something, so I still can't blog about where it is (lest an unwitting congregation member stumble across this blog... not that that's likely but there we go!) We've been on a second visit and met a variety of key members of the team ministry and congregations and everyone is happy, including us.
The one little clue, which I have revealed in the title of this post, is that it's a parish by the sea. I think this will be a lovely environment for Arthur to grow up in. I'm already imagining summer's evenings mucking around on the beach, sandcastles, ice creams, walking along the prom with the pushchair etc. etc. The churches look great, a real mix of traditions from catholic to evangelical, both town and rural. The training incumbent is absolutely super and I think we'll get on really well. All in all, a really positive prospect - can't wait!
But there's still a year of college to go, and the start of term is rapidly creeping up. One thing that's really on my mind is my dissertation. Cathy, the MTh tutor, suggested a while ago, in the middle of a conversation about the then pre-natal Arthur, that I might want to write about disability. This seemed like a sensible option. After all, it's meant to be a degree in Applied Theology, and what could be more 'real life' than the theological questions I was already asking? Back at that early stage I was asking: Why would God give someone the burden of a disability before they were even born? Why him, why not someone else? Should I want him to be healed?
Gradually, as I thought a bit more and read some disabled theology, my views began to change. I realised it was unhelpful to me to think about spina bifida as some sort of negative burden, and tried to think about it as something really positive, something God had given to the baby and to us for reasons which might one day become clear. I decided, therefore, that healing was inconsistent with God's plan in which he had predestined that our baby should have this condition, and therefore I wouldn't want the baby to be healed.
Now Arthur is here, my views have changed again. Now, I think about him as Arthur (who, alongside various quirks and personality traits, has spina bifida), rather than 'a spina bifida baby'. Whereas before I happily embraced spina bifida as part of his intrinsic identity, I'm now less inclined to believe that disability in any way defines him. Having done catheters every 3 hours for the last 5 weeks, I'm pretty convinced that, were there any way I could take the annoyance of doing catheters away from him, I would.
Anyway, I've gone off on a tangent. At least this shows I've been thinking about disability enough for it to be a decent dissertation topic. Rather than focusing on issues of why people are disabled, or issues of healing, I'm thinking about human flourishing - what God wants for humanity - and how disability fits into this. I've been watching the Paralympics and reading Tanni Grey-Thompson's autobiography recently, and these have given much food for thought on what 'potential' and 'achievement' might mean when it comes to disability.
Back to Arthur. Our trip to Urology a couple of weeks ago revealed that he has been overeating which would be fine for a baby who can naturally expel unneeded nutrients, but not so good for a baby who retains. Therefore, he is on a strict feeding regime where he is only fed as much as he needs for his weight. This has meant quite a lot of griping on his part, but we've been a lot less stressed as we've finally been able to get into a rhythm. I think Paul and I are splitting the tasks very well, so I'm not too worried about how we'll cope when term starts.
Hmm. Start of term. Three weeks away now!
The one little clue, which I have revealed in the title of this post, is that it's a parish by the sea. I think this will be a lovely environment for Arthur to grow up in. I'm already imagining summer's evenings mucking around on the beach, sandcastles, ice creams, walking along the prom with the pushchair etc. etc. The churches look great, a real mix of traditions from catholic to evangelical, both town and rural. The training incumbent is absolutely super and I think we'll get on really well. All in all, a really positive prospect - can't wait!
But there's still a year of college to go, and the start of term is rapidly creeping up. One thing that's really on my mind is my dissertation. Cathy, the MTh tutor, suggested a while ago, in the middle of a conversation about the then pre-natal Arthur, that I might want to write about disability. This seemed like a sensible option. After all, it's meant to be a degree in Applied Theology, and what could be more 'real life' than the theological questions I was already asking? Back at that early stage I was asking: Why would God give someone the burden of a disability before they were even born? Why him, why not someone else? Should I want him to be healed?
Gradually, as I thought a bit more and read some disabled theology, my views began to change. I realised it was unhelpful to me to think about spina bifida as some sort of negative burden, and tried to think about it as something really positive, something God had given to the baby and to us for reasons which might one day become clear. I decided, therefore, that healing was inconsistent with God's plan in which he had predestined that our baby should have this condition, and therefore I wouldn't want the baby to be healed.
Now Arthur is here, my views have changed again. Now, I think about him as Arthur (who, alongside various quirks and personality traits, has spina bifida), rather than 'a spina bifida baby'. Whereas before I happily embraced spina bifida as part of his intrinsic identity, I'm now less inclined to believe that disability in any way defines him. Having done catheters every 3 hours for the last 5 weeks, I'm pretty convinced that, were there any way I could take the annoyance of doing catheters away from him, I would.
Anyway, I've gone off on a tangent. At least this shows I've been thinking about disability enough for it to be a decent dissertation topic. Rather than focusing on issues of why people are disabled, or issues of healing, I'm thinking about human flourishing - what God wants for humanity - and how disability fits into this. I've been watching the Paralympics and reading Tanni Grey-Thompson's autobiography recently, and these have given much food for thought on what 'potential' and 'achievement' might mean when it comes to disability.
Back to Arthur. Our trip to Urology a couple of weeks ago revealed that he has been overeating which would be fine for a baby who can naturally expel unneeded nutrients, but not so good for a baby who retains. Therefore, he is on a strict feeding regime where he is only fed as much as he needs for his weight. This has meant quite a lot of griping on his part, but we've been a lot less stressed as we've finally been able to get into a rhythm. I think Paul and I are splitting the tasks very well, so I'm not too worried about how we'll cope when term starts.
Hmm. Start of term. Three weeks away now!
Thursday, 16 August 2012
Baby Plumbing
Wow! What a couple of weeks it's been. No one ever tells you what hard work babies are! Well, they do. They tell you about sleep deprivation and never being able to finish a cup of tea or complete a task, but you don't actually BELIEVE them do you?
However, I'm not moaning. I've a sneaky feeling that Arthur is a particularly placid baby. Last night he slept from 10.30pm to 4.30am and again from 5.45am to 9.30am meaning that Paul and I got a really good night's sleep. Admittedly, he moaned for most of yesterday afternoon and evening but I can deal with that!
Our big worry is still Arthur's plumbing. Since being home we've slowly come to realise that he can't wee at all. It hit me quite hard first of all because I had really hoped he'd be the exception rather than the rule when it comes to spina bifida meaning incontinence (I expect all parents think this!) When we were sent home from hospital we were instructed to catheterise him every 6-hours, but this led to huge build-ups in his bladder. His bladder is only meant to hold 30 or 40ml, but it was often stretching as far as 150ml. Obviously, he wouldn't explode, the wee would force its way out eventually in a trickle, but would also go up into his kidneys which could be damaging.
So we're up to 3-hourly catheterising which has its problems, especially given how much he sleeps at night. If he sleeps for 6 hours, Paul and I really don't want to be waking ourselves (and, more importantly, him!) up after 3 hours to drain his bladder. Urology are sending us some indwelling catheters for overnight, so that should solve this problem. Going out and about is also a problem with 3-hourly cathing. A nappy change while out at the shops is one thing, but the cath takes considerably longer and generally involves a degree of screaming (not because it's painful, but because he hates lying on his back with his nappy off!) Still, it's something we'll have to work out. We're not the first parents to have to catheterise a newborn, and we won't be the last.
Anyway, the plan is that urology will work out why Arthur is producing and retaining so much wee, so it can be sorted out and the cathing can be done less regularly. To this end, Arthur and I have another overnight stay in hospital on Monday and Tuesday. Basically, they'll monitor what he's eating and what he's producing for a 24 hour period, as well as using the opportunity to scan him again and do some blood tests. I'm feeling quite chilled out about this stay in hospital. I feel I understand Arthur better now, and I know how the hospital works a bit better too, so I'll take all the home comforts we both need for a good stay.
Talking of the hospital, we had a appointment there today, this time with neurology. Some of Arthur's wound has healed very well, but the stitches at the top had come undone. The junior doctor told us he would need to restitch him under a general anaesthetic and keep him in overnight, but then a consultant turned up and said that, given that Arthur probably doesn't have a lot of sensation in his lower back anyway, he may as well stitch him up with no anaesthetic at all. Arthur screamed a bit (therefore, I conclude, he probably does have a bit of sensation in his back!) but the whole procedure only took about 5 minutes and I feel it was a better decision than subjecting the poor mite to yet another GA. While we were there he had his head measured, and I'm pleased to report it remains bang on the 50% quartile (exactly average) so there's no worry about hydrocephalus yet.
Oh - and we took Arthur to be registered today. That was great fun! It feels odd to be registering him in Oxford, given he's going to be a Westcountry boy really, but - as I always say - he'll be back in Oxford in 18 years anyway...! (Pushy? Moi?)
In other news... Well there isn't actually any other news. It's amazing how much a baby takes over your life. But it's not a bad thing, it's fab. I've been watching a lot of Olympics and I'm gutted its over but really looking forward to the Paralympics, especially because so many of them have spina bifida so I can show Arthur what he can achieve if he works hard.
We've had lots of lovely visitors over the last few days, and we've been down to Somerset too to see some family. The wonderful wonderful people of Cuddesdon are continuing to drop food at our door and I count my blessings every time they do. Life is good.
However, I'm not moaning. I've a sneaky feeling that Arthur is a particularly placid baby. Last night he slept from 10.30pm to 4.30am and again from 5.45am to 9.30am meaning that Paul and I got a really good night's sleep. Admittedly, he moaned for most of yesterday afternoon and evening but I can deal with that!
Our big worry is still Arthur's plumbing. Since being home we've slowly come to realise that he can't wee at all. It hit me quite hard first of all because I had really hoped he'd be the exception rather than the rule when it comes to spina bifida meaning incontinence (I expect all parents think this!) When we were sent home from hospital we were instructed to catheterise him every 6-hours, but this led to huge build-ups in his bladder. His bladder is only meant to hold 30 or 40ml, but it was often stretching as far as 150ml. Obviously, he wouldn't explode, the wee would force its way out eventually in a trickle, but would also go up into his kidneys which could be damaging.
So we're up to 3-hourly catheterising which has its problems, especially given how much he sleeps at night. If he sleeps for 6 hours, Paul and I really don't want to be waking ourselves (and, more importantly, him!) up after 3 hours to drain his bladder. Urology are sending us some indwelling catheters for overnight, so that should solve this problem. Going out and about is also a problem with 3-hourly cathing. A nappy change while out at the shops is one thing, but the cath takes considerably longer and generally involves a degree of screaming (not because it's painful, but because he hates lying on his back with his nappy off!) Still, it's something we'll have to work out. We're not the first parents to have to catheterise a newborn, and we won't be the last.
Anyway, the plan is that urology will work out why Arthur is producing and retaining so much wee, so it can be sorted out and the cathing can be done less regularly. To this end, Arthur and I have another overnight stay in hospital on Monday and Tuesday. Basically, they'll monitor what he's eating and what he's producing for a 24 hour period, as well as using the opportunity to scan him again and do some blood tests. I'm feeling quite chilled out about this stay in hospital. I feel I understand Arthur better now, and I know how the hospital works a bit better too, so I'll take all the home comforts we both need for a good stay.
Talking of the hospital, we had a appointment there today, this time with neurology. Some of Arthur's wound has healed very well, but the stitches at the top had come undone. The junior doctor told us he would need to restitch him under a general anaesthetic and keep him in overnight, but then a consultant turned up and said that, given that Arthur probably doesn't have a lot of sensation in his lower back anyway, he may as well stitch him up with no anaesthetic at all. Arthur screamed a bit (therefore, I conclude, he probably does have a bit of sensation in his back!) but the whole procedure only took about 5 minutes and I feel it was a better decision than subjecting the poor mite to yet another GA. While we were there he had his head measured, and I'm pleased to report it remains bang on the 50% quartile (exactly average) so there's no worry about hydrocephalus yet.
Oh - and we took Arthur to be registered today. That was great fun! It feels odd to be registering him in Oxford, given he's going to be a Westcountry boy really, but - as I always say - he'll be back in Oxford in 18 years anyway...! (Pushy? Moi?)
In other news... Well there isn't actually any other news. It's amazing how much a baby takes over your life. But it's not a bad thing, it's fab. I've been watching a lot of Olympics and I'm gutted its over but really looking forward to the Paralympics, especially because so many of them have spina bifida so I can show Arthur what he can achieve if he works hard.
We've had lots of lovely visitors over the last few days, and we've been down to Somerset too to see some family. The wonderful wonderful people of Cuddesdon are continuing to drop food at our door and I count my blessings every time they do. Life is good.
Sunday, 5 August 2012
Arthur James Alderson
This is going to be a long post...!
This time last week, I was in labour! (The state of birthing a child, not the political party).
Since finding out I was pregnant, Paul and I had joked about me going into labour on 29th July, which was an amusing thought for two reasons -
1) It's my birthday.
2) To celebrate my birthday, we had tickets to the women's 3m springboard final.
Up until a couple of months ago, I had every intention of going to said springboard final. It was only when I became rather heavy and lumbering that I decided against it, due to all the crowds and queueing. I didn't seriously think I'd go into labour 9 days early, so I told Paul to go anyway. Mum kindly agreed to stay with me so we could play Scrabble, eat birthday cake and watch the Olympics on TV.
At 2pm we settled down to our game of Scrabble. I got three brilliant words (including getting all my letters out on a triple for 109). And suddenly I started feeling pains. Mum immediately suspected I was going into labour. I assured her I was not, it was just the effects of sitting on the sofa leaning forward to play Scrabble.
By 2.50pm there was no doubt. Paul, from his seat in the aqautics centre waiting for the diving to start at 3pm, phoned me to check I was watching it. I decided not to tell him, so as to let him watch the event without distraction! An hour later, I was getting regular painful contractions so I phoned him as he was leaving Olympic park. "You'll never guess what..."
While Paul rushed back across London, the contractions got worse and worse. Mum was super calm and helped me write down how often they occurred and for how long. I was hoping to hold out at home until Paul got back, but was amazed at how quickly the contractions got painful. At around 5.30pm (I think) Mum phoned for an ambulance.
I've never been in an ambulance before. The crew were great, and drove carefully to the hospital without the lights on. I was pleased for the gas and air, but upset when the paramedic commented that the labour seemed to be progressing very quickly. I was terrified Paul wouldn't be there for the birth.
Things got very painful from there, also quite blurry. I remember my waters breaking. I remember Paul arriving and Mum slipping away having been amazing. I remember lying on a beanbag and asking for an epidural. I also remember being told the anaesthetist would be half-an-hour and reacting in a slightly ungracious way. I remember having the epidural and being pain free and conversational. I remember Cheryl - the fantastic midwife - recommend that both Paul and I have a sleep before pushing. I remember, 5 minutes later, wanting to push and doing so painlessly for an hour, then painfully for another hour (they'd dropped the medication in the epidural to make me work, I reckon!) Eventually I was tired of pushing and had to have an episiotomy and forceps delivery. He was born at 3.10am, weighing 7 lbs 10 oz.
We always knew that the room would be pretty crowded when he was born. Indeed, there was the midwife and two doctors assisting with the birth, and a large team of paediatricians waiting in the corner with resuscitation equipment in case the Arnold Chairi malformation of his brain meant he couldn't breath. And then he was born and he screamed and they gave him to me, and we knew he was ok. I had him for a moment then they took him away and wrapped him in cling film to protect his spinal defect which, as predicted, was completely open. Then they wrapped him in blankets and brought him back to us.
We decided he would be Arthur James Alderson. It wasn't the name we had planned. He was pretty much definitely going to be James Arthur. Then we saw him, and he looked so much like an Arthur.
He went off to special care, I slept. Paul went home and slept. I woke up feeling faint and confused. Paul returned and we were visited by two neurosurgeons who told us that Arthur was doing well, but would need to be operated on immediately. He didn't need any operations on his brain, but the hole in his spine would need to be closed. They talked us through the risks and we signed a parental consent form, which was really odd given we had only met him once, for twenty minutes.
While he was operated on, I was taken up to the Silver Star Unit, where people whose pregnancies are high risk recover from labour. It's mostly for women who have some problems, but whose babies are healthy, and I could hear women with their babies in the adjoining rooms.
It was not until 3pm that I received a phone call from Robin's Ward, in the John Radcliffe Children's Hospital, to say that Arthur had been taken there. Not needing a ventilator or incubator, they had decided to place him by his condition, rather than his age, so he had gone to a paediatric neurology ward, rather than back to special care. We went to visit him, Paul pushing me in a wheelchair. He looked so small in a big cot. He was hooked up to all sorts of monitors, but it was wonderful to be able to hold him. I went back to sleep at the Silver Star unit feeling happy.
The next day I realised we had a problem. Arthur was in the Children's Hospital. I was in the Silver Star unit. The two are at opposite sides of the John Radcliffe hospital. Arthur could not move over to me (because he needed monitoring from neurology) and I could not move over to him (because I am not a child!) I told Silver Star that I did not need to be there any more, and wanted to be with Arthur, and they agreed to discharge me.
The next two days (Tuesday and Wednesday) Paul and I spent all day on Robin's Ward, going home in the evening. Together, we learnt to feed and change Arthur. Both days we missed the neurologists' rounds, but were told that they were very happy with the way Arthur's wound was healing. The nerve damage appeared to have caused some weakness in his ankles. One of his ankles is also slightly out of alignment (called talipes, or club foot, something which they hadn't spotted on the scans). But the long term prognosis was as we had thought - he will be able to walk but probably with ankle braces. As expected, he is unusual in a spina bifida child in that he does not have hydrocephalus (fluid on the brain) as yet, but they'll keep monitoring that.
Urology were very interested in Arthur. We were visited frequently by a urology nurse who told us that they weren't sure whether Arthur could be continent or not, and we won't know whether he has control over his bladder and bowels until he is of potty training age. Some spina bifida children are unable to fully drain their bladder, which damages their kidneys. Others can't control their bladder and wee all the time. We won't know which one Arthur is, if either, for a long time. Until then, we are having to catheterise him four times a day. The reason for this is mainly psychological - starting to catheterise a three-year-old is stressful for both parents and child so we are starting from birth. We will keep praying that Arthur will potty train fine, when the time comes, but we are aware that incontinence is a strong possibility.
Having to start to catheterise him so regularly meant that I was asked to stay overnight on Robin's ward. This was a tricky place to be while recovering from labour, as we were in a ward with mostly older children, with their parents sleeping on 'day beds' next to cots/beds. As I was not the patient, I wasn't provided with food or washing facilities. When Arthur cried in the night I felt really guilty that he was waking people up. I also felt quite self-conscious about how I was caring for him, there being so many people around all the time. With so much else on my mind, I fell into feeding him formula milk, something I am trying to get out of now he is home.
But the nurses were brilliant. They were so patient with showing Paul and I how to feed him, change him, how to dress his wound and catheterise him. Although the situation was hard for me, Arthur got amazing care and I am indebted to them. The other parents were also wonderful, and I felt inspired by how much they had to go through. There were many children much sicker than Arthur, and the parents slept with them on the hot, noisy, uncomfortable ward day after day for many weeks or months, without complaining.
On Friday we were visited by the Consultant Neurologist. He confirmed that Arthur's wound was healing incredibly quickly, and told us we could go home on Saturday. We will have to visit the hospital regularly for appointments with Neurology, Urology and Orthopaedics, but hopefully (as long as hydrocephalus doesn't develop) Arthur will avoid being an inpatient for some time yet.
We've now been home for a day-and-a-half and things are absolutely wonderful. As well as the normal newborn stuff like feeding, washing and nappy changes, Arthur has to be catheterised every six hours which is a difficult and fiddly procedure involving inserting a tube into his bladder and draining the fluid. This doesn't hurt him, but is much easier when he is asleep and therefore not kicking around! His dressing also has to be changed a couple of times a day, which is quite easy to do, but must be done very precisely. The wound is about 5cm long and just above his bottom, so the dressing gets dirty quickly and has to be changed to avoid infection. Arthur is also on three types of medication to help with the pain and aid healing, and these have to be administered into his mouth through syringes.
So... it's a lot to think about! But we are so lucky that Arthur is such a calm and happy baby (is it because of the drugs or is it his natural personality?) Like all newborns, he cries when he's hungry, he grouches when he's dirty, but most of the time he's sleeping or just looking around curiously. He's very easy to settle. We took him to Asda today, and he slept throughout and received lots of compliments from fellow shoppers. Did I mention he's ever so cute? We can't stop looking at him!
We're so thankful to everyone who has been supporting us and praying for us in what has been an often quite difficult pregnancy. Now Arthur is here, we're thinking very little about his condition. We're just enjoying him and the joy he is already bringing to our lives.
This time last week, I was in labour! (The state of birthing a child, not the political party).
Since finding out I was pregnant, Paul and I had joked about me going into labour on 29th July, which was an amusing thought for two reasons -
1) It's my birthday.
2) To celebrate my birthday, we had tickets to the women's 3m springboard final.
Up until a couple of months ago, I had every intention of going to said springboard final. It was only when I became rather heavy and lumbering that I decided against it, due to all the crowds and queueing. I didn't seriously think I'd go into labour 9 days early, so I told Paul to go anyway. Mum kindly agreed to stay with me so we could play Scrabble, eat birthday cake and watch the Olympics on TV.
At 2pm we settled down to our game of Scrabble. I got three brilliant words (including getting all my letters out on a triple for 109). And suddenly I started feeling pains. Mum immediately suspected I was going into labour. I assured her I was not, it was just the effects of sitting on the sofa leaning forward to play Scrabble.
By 2.50pm there was no doubt. Paul, from his seat in the aqautics centre waiting for the diving to start at 3pm, phoned me to check I was watching it. I decided not to tell him, so as to let him watch the event without distraction! An hour later, I was getting regular painful contractions so I phoned him as he was leaving Olympic park. "You'll never guess what..."
While Paul rushed back across London, the contractions got worse and worse. Mum was super calm and helped me write down how often they occurred and for how long. I was hoping to hold out at home until Paul got back, but was amazed at how quickly the contractions got painful. At around 5.30pm (I think) Mum phoned for an ambulance.
I've never been in an ambulance before. The crew were great, and drove carefully to the hospital without the lights on. I was pleased for the gas and air, but upset when the paramedic commented that the labour seemed to be progressing very quickly. I was terrified Paul wouldn't be there for the birth.
Things got very painful from there, also quite blurry. I remember my waters breaking. I remember Paul arriving and Mum slipping away having been amazing. I remember lying on a beanbag and asking for an epidural. I also remember being told the anaesthetist would be half-an-hour and reacting in a slightly ungracious way. I remember having the epidural and being pain free and conversational. I remember Cheryl - the fantastic midwife - recommend that both Paul and I have a sleep before pushing. I remember, 5 minutes later, wanting to push and doing so painlessly for an hour, then painfully for another hour (they'd dropped the medication in the epidural to make me work, I reckon!) Eventually I was tired of pushing and had to have an episiotomy and forceps delivery. He was born at 3.10am, weighing 7 lbs 10 oz.
We always knew that the room would be pretty crowded when he was born. Indeed, there was the midwife and two doctors assisting with the birth, and a large team of paediatricians waiting in the corner with resuscitation equipment in case the Arnold Chairi malformation of his brain meant he couldn't breath. And then he was born and he screamed and they gave him to me, and we knew he was ok. I had him for a moment then they took him away and wrapped him in cling film to protect his spinal defect which, as predicted, was completely open. Then they wrapped him in blankets and brought him back to us.
We decided he would be Arthur James Alderson. It wasn't the name we had planned. He was pretty much definitely going to be James Arthur. Then we saw him, and he looked so much like an Arthur.
He went off to special care, I slept. Paul went home and slept. I woke up feeling faint and confused. Paul returned and we were visited by two neurosurgeons who told us that Arthur was doing well, but would need to be operated on immediately. He didn't need any operations on his brain, but the hole in his spine would need to be closed. They talked us through the risks and we signed a parental consent form, which was really odd given we had only met him once, for twenty minutes.
While he was operated on, I was taken up to the Silver Star Unit, where people whose pregnancies are high risk recover from labour. It's mostly for women who have some problems, but whose babies are healthy, and I could hear women with their babies in the adjoining rooms.
It was not until 3pm that I received a phone call from Robin's Ward, in the John Radcliffe Children's Hospital, to say that Arthur had been taken there. Not needing a ventilator or incubator, they had decided to place him by his condition, rather than his age, so he had gone to a paediatric neurology ward, rather than back to special care. We went to visit him, Paul pushing me in a wheelchair. He looked so small in a big cot. He was hooked up to all sorts of monitors, but it was wonderful to be able to hold him. I went back to sleep at the Silver Star unit feeling happy.
The next day I realised we had a problem. Arthur was in the Children's Hospital. I was in the Silver Star unit. The two are at opposite sides of the John Radcliffe hospital. Arthur could not move over to me (because he needed monitoring from neurology) and I could not move over to him (because I am not a child!) I told Silver Star that I did not need to be there any more, and wanted to be with Arthur, and they agreed to discharge me.
The next two days (Tuesday and Wednesday) Paul and I spent all day on Robin's Ward, going home in the evening. Together, we learnt to feed and change Arthur. Both days we missed the neurologists' rounds, but were told that they were very happy with the way Arthur's wound was healing. The nerve damage appeared to have caused some weakness in his ankles. One of his ankles is also slightly out of alignment (called talipes, or club foot, something which they hadn't spotted on the scans). But the long term prognosis was as we had thought - he will be able to walk but probably with ankle braces. As expected, he is unusual in a spina bifida child in that he does not have hydrocephalus (fluid on the brain) as yet, but they'll keep monitoring that.
Urology were very interested in Arthur. We were visited frequently by a urology nurse who told us that they weren't sure whether Arthur could be continent or not, and we won't know whether he has control over his bladder and bowels until he is of potty training age. Some spina bifida children are unable to fully drain their bladder, which damages their kidneys. Others can't control their bladder and wee all the time. We won't know which one Arthur is, if either, for a long time. Until then, we are having to catheterise him four times a day. The reason for this is mainly psychological - starting to catheterise a three-year-old is stressful for both parents and child so we are starting from birth. We will keep praying that Arthur will potty train fine, when the time comes, but we are aware that incontinence is a strong possibility.
Having to start to catheterise him so regularly meant that I was asked to stay overnight on Robin's ward. This was a tricky place to be while recovering from labour, as we were in a ward with mostly older children, with their parents sleeping on 'day beds' next to cots/beds. As I was not the patient, I wasn't provided with food or washing facilities. When Arthur cried in the night I felt really guilty that he was waking people up. I also felt quite self-conscious about how I was caring for him, there being so many people around all the time. With so much else on my mind, I fell into feeding him formula milk, something I am trying to get out of now he is home.
But the nurses were brilliant. They were so patient with showing Paul and I how to feed him, change him, how to dress his wound and catheterise him. Although the situation was hard for me, Arthur got amazing care and I am indebted to them. The other parents were also wonderful, and I felt inspired by how much they had to go through. There were many children much sicker than Arthur, and the parents slept with them on the hot, noisy, uncomfortable ward day after day for many weeks or months, without complaining.
On Friday we were visited by the Consultant Neurologist. He confirmed that Arthur's wound was healing incredibly quickly, and told us we could go home on Saturday. We will have to visit the hospital regularly for appointments with Neurology, Urology and Orthopaedics, but hopefully (as long as hydrocephalus doesn't develop) Arthur will avoid being an inpatient for some time yet.
We've now been home for a day-and-a-half and things are absolutely wonderful. As well as the normal newborn stuff like feeding, washing and nappy changes, Arthur has to be catheterised every six hours which is a difficult and fiddly procedure involving inserting a tube into his bladder and draining the fluid. This doesn't hurt him, but is much easier when he is asleep and therefore not kicking around! His dressing also has to be changed a couple of times a day, which is quite easy to do, but must be done very precisely. The wound is about 5cm long and just above his bottom, so the dressing gets dirty quickly and has to be changed to avoid infection. Arthur is also on three types of medication to help with the pain and aid healing, and these have to be administered into his mouth through syringes.
So... it's a lot to think about! But we are so lucky that Arthur is such a calm and happy baby (is it because of the drugs or is it his natural personality?) Like all newborns, he cries when he's hungry, he grouches when he's dirty, but most of the time he's sleeping or just looking around curiously. He's very easy to settle. We took him to Asda today, and he slept throughout and received lots of compliments from fellow shoppers. Did I mention he's ever so cute? We can't stop looking at him!
We're so thankful to everyone who has been supporting us and praying for us in what has been an often quite difficult pregnancy. Now Arthur is here, we're thinking very little about his condition. We're just enjoying him and the joy he is already bringing to our lives.
Thursday, 26 July 2012
Impatience
The last few days have confirmed something I already knew about myself. I am rubbish at waiting for things. I am very, very impatient to meet Baby A sometime soon.
At this point, I can hear those of you who have been pregnant, and have gone overdue, take a sharp intake of breath because, of course you know, I'm nowhere near due date yet. 12 days to go in fact. But I've persuaded myself that, given that I myself was a few days early, and that I've been getting a few niggling stomach pains, and that Baby A is massive, he is imminent.
The statistics would not agree. I read the other day that only 25% of first time pregnancies are early, with 5% on due date and around 70% overdue. Of those who have had first babies in the time I have been at Cuddesdon, all have gone significantly overdue. In Oxford, they let pregnancies go two weeks overdue before they induce. 7th August, my due date, seems long enough away. I'd need a telescope to see 21st August.
However, a complicating factor with me is that I am not normal (see *high risk pregnancy!* sticker on notes.) The community midwife suggested that, the chances are, if I get to due date and Baby A is not playing ball, they might just induce then and there, because he's as big as he's going to be and an induction would mean a more planned birth. I quite like this idea, as I find the thought of spontaneously rocking up to the John Radcliffe a little disconcerting, given that they have to arrange for a Paediatric Neurosurgeon to be present at the birth, in case the ill-fated Baby A cannot breath. But I guess they're used to these things. There's babies born there every day who have more risks at birth than Baby A.
Anyway, we're seeing the Fetal Medicine Consultant for a final scan tomorrow, so I'm hoping he'll shed some light on what he envisages happening from now.
In the meantime, Mr A and I are here in the flat. Neither of us enjoy the heat, and I am especially adverse to it at this time, for I am the size of a small elephant. Also, we are well into the overdraft and given that venturing out of the village seems to inevitably involve spending money, we're trying to stay at base. I have The Sims, an Alan Partridge audio book and a stack of books donated by Auntie Josh to entertain me. Oh, and my essay.
We haven't been complete recluses. We went out for a curry with Kate and Lawrence on Wednesday night, and visited New Marston at the weekend, and saw Felix and Laura for Pictionary last week. I fully intend on going to morning prayer at the church when it starts off next week.
Mr A is going to the Olympics on Sunday. When we decided, last year, that he, I and my parents would celebrate my 26th birthday by attending an Olympic event, we did not envisage a clash with the arrival of an as-yet-unconceived sprogling. The women's 3m syncronised diving final was selected, as we felt it was obscure enough that we would probably get tickets, and, lo, we did. At first, I was confident I would still be able to go, but as I got more lumbering, and with Baby A's complications meaning I need to stay close to the JR, I resigned myself to the fact I would not directly witness London 2012. I'm keen that Paul goes though. He is going with my Dad, my brother, and my brother's girlfriend. Mum is staying here and we're celebrating my birthday by cooking a roast, playing Scrabble and watching 3m diving on the TV.
I sort of thought the last few days and weeks prior to Baby A would be a mad rush buying last minute things, but to my amazement we're actually there. Our last purchase was £300 on a set of reuseable nappies, which has been the major contributor to the overdraft's sorry state, but given the price of disposables I think they'll pay for themselves.
We're prepared in other ways too, in that we actually have a name! Yes, a name! A name which, when I write it down, looks like a proper name which might belong to an actual person. 12 days to go, perhaps this is THE name? We're getting short of time if we're going to change our minds! We shall see....!
At this point, I can hear those of you who have been pregnant, and have gone overdue, take a sharp intake of breath because, of course you know, I'm nowhere near due date yet. 12 days to go in fact. But I've persuaded myself that, given that I myself was a few days early, and that I've been getting a few niggling stomach pains, and that Baby A is massive, he is imminent.
The statistics would not agree. I read the other day that only 25% of first time pregnancies are early, with 5% on due date and around 70% overdue. Of those who have had first babies in the time I have been at Cuddesdon, all have gone significantly overdue. In Oxford, they let pregnancies go two weeks overdue before they induce. 7th August, my due date, seems long enough away. I'd need a telescope to see 21st August.
However, a complicating factor with me is that I am not normal (see *high risk pregnancy!* sticker on notes.) The community midwife suggested that, the chances are, if I get to due date and Baby A is not playing ball, they might just induce then and there, because he's as big as he's going to be and an induction would mean a more planned birth. I quite like this idea, as I find the thought of spontaneously rocking up to the John Radcliffe a little disconcerting, given that they have to arrange for a Paediatric Neurosurgeon to be present at the birth, in case the ill-fated Baby A cannot breath. But I guess they're used to these things. There's babies born there every day who have more risks at birth than Baby A.
Anyway, we're seeing the Fetal Medicine Consultant for a final scan tomorrow, so I'm hoping he'll shed some light on what he envisages happening from now.
In the meantime, Mr A and I are here in the flat. Neither of us enjoy the heat, and I am especially adverse to it at this time, for I am the size of a small elephant. Also, we are well into the overdraft and given that venturing out of the village seems to inevitably involve spending money, we're trying to stay at base. I have The Sims, an Alan Partridge audio book and a stack of books donated by Auntie Josh to entertain me. Oh, and my essay.
We haven't been complete recluses. We went out for a curry with Kate and Lawrence on Wednesday night, and visited New Marston at the weekend, and saw Felix and Laura for Pictionary last week. I fully intend on going to morning prayer at the church when it starts off next week.
Mr A is going to the Olympics on Sunday. When we decided, last year, that he, I and my parents would celebrate my 26th birthday by attending an Olympic event, we did not envisage a clash with the arrival of an as-yet-unconceived sprogling. The women's 3m syncronised diving final was selected, as we felt it was obscure enough that we would probably get tickets, and, lo, we did. At first, I was confident I would still be able to go, but as I got more lumbering, and with Baby A's complications meaning I need to stay close to the JR, I resigned myself to the fact I would not directly witness London 2012. I'm keen that Paul goes though. He is going with my Dad, my brother, and my brother's girlfriend. Mum is staying here and we're celebrating my birthday by cooking a roast, playing Scrabble and watching 3m diving on the TV.
I sort of thought the last few days and weeks prior to Baby A would be a mad rush buying last minute things, but to my amazement we're actually there. Our last purchase was £300 on a set of reuseable nappies, which has been the major contributor to the overdraft's sorry state, but given the price of disposables I think they'll pay for themselves.
We're prepared in other ways too, in that we actually have a name! Yes, a name! A name which, when I write it down, looks like a proper name which might belong to an actual person. 12 days to go, perhaps this is THE name? We're getting short of time if we're going to change our minds! We shall see....!
Wednesday, 11 July 2012
Going West
I think I may have found a Curacy.
I say 'think' but it seems so entirely appropriate that I'd be very surprised if this wasn't the one. It's the second one we've looked at. We were contacted by the Diocese a few weeks ago with the Parish Profile of one particular place. It looked ok - more Anglo-Catholic than I was expecting, and in a slightly remote geographical area - but good enough to take a look. We went down to visit over the Jubilee weekend, but it just felt wrong.
Sure, the Vicar was lovely. And the house looked incredible (the sort of place a rich Uncle might live, not humble old me, Mr and Baby A). But somehow I felt uneasy. I kept wanting to see something absolutely awful, an easy excuse to rule it out, but everything was just fine. It's just that we couldn't see ourselves living there, and I couldn't imagine ministering in those churches. We prayed, we reflected, we said no.
The second place was completely different. From reading the Parish Profile and all the way through our visit we both felt somehow excited. I can't quite pinpoint why. Just gut instinct. Maybe that's the way God calls. When we got home, I emailed the Diocese to say that I felt positive about this one. This morning, we went to see the DDO who confirmed that the Vicar who would be my training incumbent has said the same thing.
I wish I could tell you where it was. Unfortunately, at least another visit is needed to firm things up. We'll have to meet the rest of the Team and Churchwardens, have my appointment discussed by the PCC and get stuff signed before I can tell you. Suffice to say it's a small town. The distance to our families in Taunton isn't too much further than when we were in Exeter, and our friends in Exeter will be very near indeed. The churches are a super mix - from Anglo-Catholic to Open Evangelical - and breadth, as you know, is right up my street. They seem excited about mission and ecumenical work. We've only seen the outside of the house, in a highly-populated residential area in the town, with lots close by.
We could bring up Baby A here. We really could. Talking of which it's less than 4 weeks to go. But more on Baby A next time...
I say 'think' but it seems so entirely appropriate that I'd be very surprised if this wasn't the one. It's the second one we've looked at. We were contacted by the Diocese a few weeks ago with the Parish Profile of one particular place. It looked ok - more Anglo-Catholic than I was expecting, and in a slightly remote geographical area - but good enough to take a look. We went down to visit over the Jubilee weekend, but it just felt wrong.
Sure, the Vicar was lovely. And the house looked incredible (the sort of place a rich Uncle might live, not humble old me, Mr and Baby A). But somehow I felt uneasy. I kept wanting to see something absolutely awful, an easy excuse to rule it out, but everything was just fine. It's just that we couldn't see ourselves living there, and I couldn't imagine ministering in those churches. We prayed, we reflected, we said no.
The second place was completely different. From reading the Parish Profile and all the way through our visit we both felt somehow excited. I can't quite pinpoint why. Just gut instinct. Maybe that's the way God calls. When we got home, I emailed the Diocese to say that I felt positive about this one. This morning, we went to see the DDO who confirmed that the Vicar who would be my training incumbent has said the same thing.
I wish I could tell you where it was. Unfortunately, at least another visit is needed to firm things up. We'll have to meet the rest of the Team and Churchwardens, have my appointment discussed by the PCC and get stuff signed before I can tell you. Suffice to say it's a small town. The distance to our families in Taunton isn't too much further than when we were in Exeter, and our friends in Exeter will be very near indeed. The churches are a super mix - from Anglo-Catholic to Open Evangelical - and breadth, as you know, is right up my street. They seem excited about mission and ecumenical work. We've only seen the outside of the house, in a highly-populated residential area in the town, with lots close by.
We could bring up Baby A here. We really could. Talking of which it's less than 4 weeks to go. But more on Baby A next time...
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