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.
Thursday 16 August 2012
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.
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