Jamie was born by planned caesarean.
It was an odd decision to try to make. My condition isn't such that the medical professionals involved were insisting that a c-section was the only way to go, but the option was on the table from the outset. The decision, however, was entirely down to me, which helped me feel a lot more in control of things.
Surgery is never something to take lightly. As operations go, c-sections are pretty safe, but they ultimately involve a slice through your abdomen big enough to haul out an entire wriggling baby - there's a lot of risks to be considered and it typically takes longer to recover from than a complication-free "natural" childbirth. But we felt that, for me and my body and what I know of my condition for the last decade, an attempt at "natural" labour would be likely to end up in an unplanned c-section anyway, that would happen while I was exhausted to the point of incoherence - and then I would have to recover from surgery AND labour simultaneously, instead of one or the other. Therefore the best way of ensuring things went smoothly, that I recovered as soon as possible, that I understood what was happening and was mentally present for the birth of my child, was a planned c-section.
A secondary factor was that if I attempted "natural" birth and failed, that failure would be very upsetting. I would feel that I'd let the baby down. If I'd been so exhausted that I couldn't understand what was happening when I went into theatre, then my consent would have been a fuzzy issue, and I would feel like my hoped-for "birth experience" had been taken from me. It seemed more emotionally sensible to set my expectations at an achievable level.
I have to admit that even now, two months post-partum, I'm still not entirely reconciled to the c-section on the emotional side of things. There is so much information out there about the many and varied reasons why a "natural" birth is better for both mother and child, if there are no other factors to be taken into consideration, but pretty much all the information leaves out that caveat. Pregnancy magazines cheerlead expectant mothers along with soundbites like "having a baby is what your body was designed to do!" and (quite apart from the feminist and anti-creationism problems I have with that statement) this approach really excludes those of us whose bodies struggle with certain things. Every magazine I read gave me exactly the same feeling of "this isn't for you; you're not our target audience and we'd rather not have to consider you" as a shop or service building that has steps out the front. Goodness knows what it does to women who need c-sections but aren't already used to finding themselves outside the dominant paradigm.
Anyway. A planned c-section it was. The planning extended to the date, but not the time of the surgery. The way our hospital runs it is: people scheduled for c-sections that day arrive at the labour ward at 8am, and then the day's theatre schedule is created in order of priority, to include the women who are already in labour and for some reason need or are likely to need an unplanned c-section. I think this is a really good way of organising it. Not only does it mean that the women most in need are prioritised, but also, it was nice having some unknown elements in what was quite a medicalised version of having a baby.
On the day, we turned up at 8am and I was given a theatre gown straight away and told there were only two of us in for surgery that day so we'd likely be meeting our baby quite soon. Unfortunately emergencies started to happen and after a while our midwife came back and told us to get my socks back on and bundle me up in our coats to keep warm during the delay.
A while after that we were moved to the post-natal ward to wait. It had been agreed ahead of time that the best way to deal with my mobility needs after the birth was to place me in one of the side rooms, which had solid walls rather than curtains and a bit more space either side of the bed than the cubicles on the ward. I think perhaps part of the reason we were moved was to make sure that the room the ward manager had felt would be most suitable didn't end up being reassigned to one of the emergency cases. It was a lovely and unexpected bonus to get the chance to relax and acclimatise to the post-natal environment while still being pre-natal. I think the only downside was that being pre-surgery I had to keep declining the offers of breakfast, tea, elevenses, lunch, more tea... Mostly we were just being thankful that we weren't an emergency.
I did have to send Steve to go and eat something. He'd been too nervous to eat first thing in the morning. By mid-morning he was hungry, but didn't dare go to the cafeteria in case we were called for theatre while he was gone. Eventually around lunchtime I convinced him that I'd rather have him be two minutes late into theatre, than risk him passing out while I was lying there immobilised on the operating table.
And then suddenly, mid-afternoon, our midwife appeared in the room wearing scrubs and asked if we were ready? We took the coats and jumpers off me, I got into my wheelchair, and we followed her to the corridor where the operating theatre was. At that point, Steve was directed to go put some scrubs on, and I went into the theatre. There were windows and natural light as well as the electric lighting, which I hadn't expected but quite liked. I was in my chair right up to the operating table.
First I had to sit on the table to have the spinal anaesthetic. The anaesthetist(?), who I think was called Scott, stood behind me, while another person (doctor? nurse? other? I think his name was Trevor, everyone introduced themselves to me by first names rather than titles) supported me to try and bend forward enough that the needle could go in between the correct vertebrae. This didn't work so well - I think my back muscles had tensed from sitting in slightly awkward positions and also from being suddenly cold, plus of course I had a massive baby bump to try and bend around. Another person joined in, and the combination of being manhandled, but so very carefully, and at such an emotional moment, meant it was a weird halfway point between wrestling and a group hug. Eventually the spinal was in, though, and I lay down on the table and realised that I had, after all, forgotten to take my socks off.
At that point Steve was allowed in, although his first job was to return my wheelchair (and, I presume, my socks) to the post-natal ward. It can't have taken him more than two minutes but it felt like a very long two minutes. Meanwhile, probably-Scott was adjusting my drip based on what I was telling him. I did feel a bit silly and complain-y saying things like "I feel cold," and "I don't think I'll throw up but I feel a bit nauseous," but since his response was invariably "okay, we'll take care of that," followed by whatever it was being resolved, I guess it's what I was supposed to tell him. Finally a can of spray was squirted first at my arm (where I felt it as freezing cold) and then all over the rest of my body (where I didn't feel it at all), and we were ready to go.
Steve came back in and was told to sit at my right shoulder, and probably-Scott was at my left shoulder. There was a sheet suspended over my chest, and everyone else was on the other side of the sheet. The people in the room did do a quick run-through of names and roles but my mind was otherwise occupied.
I did not feel the incision, but I could feel the baby still moving inside me, and I could feel that my lower body was being moved about, although I have no idea what position I ended up in. It's not exactly a delicate operation and there was a whole lot of pushing and tugging - sometimes enough that my upper body on "our" side of the sheet was visibly moving. There wasn't any pain at all, but having the rummaging-about sensations meant I didn't feel detached from what was happening. Steve kept talking to me, and I kept breathing and trying to relax, and then there was the sound of a baby crying, which seemed so... scripted? clichéd? but of course it's what happened, and then someone said "oh, he's gorgeous!" followed by "erm, did they know if it was a boy or a girl?" which Steve and I couldn't help laughing about.
Steve took pictures with my phone of Jamie being wiped off, weighed, en-nappied and wrapped in warm towels. Then as per our birth plan, he took the first cuddle while the various wires and monitors around my chest were moved to allow Jamie to be placed on my chest for skin-to-skin contact. Probably-Trevor came round the sheet and joined probably-Scott for this bit but I really wasn't paying attention to anything at that point except Jamie, who didn't yet have a name. He was just Baby, all tiny and warm and fragile. He looked so very much like a complete and individual person that I could hardly believe that just a few minutes previously he'd been inside me, effectively one of my internal organs, growing out of the things I ate. I was aware, on some level, that the operation was still continuing, but I couldn't feel a thing any more. We kept cuddling all the while that I was being sewn back up, and he even stayed on me while the two of us were transferred from the operating table to a hospital bed and wheeled through to the recovery room, where the midwife helped us with our first attempt at breastfeeding.
It was a lovely birth experience. I don't have a Natural Childbirth Top Trumps card (hours in labour, number of stitches, etc) but in many ways that's a relief. I just have the care and friendliness of the NHS helping us transition to being a family of three with a minimum amount of drama.
Sunday, December 13, 2015
Sunday, November 15, 2015
Noises
Noises that Jamie seems to like:
- Louis Armstrong, Ella Fitzgerald, etc
- The voice of the person on whose chest he is being held
- White noise (eg roomba, Ewan the Dream Sheep)
Noises that don't seem to bother Jamie:
- the doorbell or telephone ringing
- people talking in the same room
- fireworks
Noises guaranteed to wake Jamie up in URGENT and IMMEDIATE need of feeding and nappy changing and a cuddle and oh my goodness the whole world is about to explode:
- the pop of a tube of Pringles
- the scrunch of a packet of biscuits
- the click of mummy's dinner plate being placed on the table
- Louis Armstrong, Ella Fitzgerald, etc
- The voice of the person on whose chest he is being held
- White noise (eg roomba, Ewan the Dream Sheep)
Noises that don't seem to bother Jamie:
- the doorbell or telephone ringing
- people talking in the same room
- fireworks
Noises guaranteed to wake Jamie up in URGENT and IMMEDIATE need of feeding and nappy changing and a cuddle and oh my goodness the whole world is about to explode:
- the pop of a tube of Pringles
- the scrunch of a packet of biscuits
- the click of mummy's dinner plate being placed on the table
Wednesday, November 11, 2015
Introducing Jamie
As planned, the bump was delivered to babyhood in mid-October. Internet, meet Jamie.
Born weighing 7lbs, he's healthy and happy. And perfect. Of course he's perfect. He has perfect ears and perfect long little toes and perfect enormous blue eyes. I want to write paragraphs and paragraphs about how brilliant he is in every way, and of course I don't have time, because he's a newborn, and I'm breastfeeding, and there's any number of friends and relatives to wrangle, and Steve's back at work, and babies make a lot of laundry... and honestly because for the last few weeks, if you gave me a choice between writing a blog post about my tiny baby Jamie, or actually cuddling him or playing with him or doing things he needs me to do, well, it's a no-brainer.
There's difficult times as well. Like when he decides to wake up and demand feeding NOW NOW NOW in the same minute as I've got my dinner on the table. Like when he projectile vomits all over the place at 3am. Like when I haven't felt able to take my pain relief because it makes me too drowsy to take care of him properly and I'm not managing to fully let go and trust anyone else to be the Awake Responsible Adult who will make sure I don't nod off mid-feed and suffocate him (particular fear, there).
But these are vastly outweighed by the good bits. In some ways, even the difficult bits are good. One of our friends watched me calmly dealing with an incident involving a variety of bodily fluids and observed that he'd rarely seen me so happy. I am happy. I'm happy because I know I'm good with babies, I'm confident about what I'm doing, I'm well supported by Steve and by my friends, and everything is going well.
What else to tell you...
The birth was by planned caesarean, which went well. We cannot praise the NHS staff enough - from the first booking appointment with the midwife at 10 weeks pregnant, to the theatre team, to the still ongoing postnatal care from the Health Visitor, everyone we've dealt with was professional and supportive. A particular mention has to go to everyone at Swan Ward at Warwick Hospital, from the lady with the tea trolley to the ward manager, they were compassionate and friendly and helpful. We thanked them all profusely and heard in response a lot of variations on a theme of "well, that's my job..." no. There's ways and ways of doing your job. Steve and I feel like we got absolute gold standard care, and never doubted that the three of us were safe.
Lovely though everyone was at the hospital, it was still a hospital so I was very glad to be discharged just 50 hours after surgery. Steve had a full two weeks of paternity leave, which we definitely needed. We went out several times, and since he's gone back to work, Jamie and I have continued to go out with PA support. Every time we leave the house Jamie seems to make new friends - in supermarkets, in cafes, in the library, in the park, always there are strangers marvelling at him. It's making me feel better to be out and about after so much of my pregnancy was spent confined to base.
The PA support is working out well. The golden rule is that the PAs Must Not Do Childcare. They must not, to give a specific example, change a nappy. But they can and do lift the baby onto the change table; if I have a moment and need to stop mid-change they can hold onto him and make sure he doesn't roll off while I pull myself together; and at the end of a shift they go through my "replenish list" to make sure that there are enough nappies (and cotton wool and wipes and cream and a fresh outfit and a few other bits and bobs) in various strategic locations within my reach to see me through until Steve gets home or the next shift starts.
Every day, I feel glad we did this, pleased with how it is going so far, and hopeful about the future of our little family.
Born weighing 7lbs, he's healthy and happy. And perfect. Of course he's perfect. He has perfect ears and perfect long little toes and perfect enormous blue eyes. I want to write paragraphs and paragraphs about how brilliant he is in every way, and of course I don't have time, because he's a newborn, and I'm breastfeeding, and there's any number of friends and relatives to wrangle, and Steve's back at work, and babies make a lot of laundry... and honestly because for the last few weeks, if you gave me a choice between writing a blog post about my tiny baby Jamie, or actually cuddling him or playing with him or doing things he needs me to do, well, it's a no-brainer.
There's difficult times as well. Like when he decides to wake up and demand feeding NOW NOW NOW in the same minute as I've got my dinner on the table. Like when he projectile vomits all over the place at 3am. Like when I haven't felt able to take my pain relief because it makes me too drowsy to take care of him properly and I'm not managing to fully let go and trust anyone else to be the Awake Responsible Adult who will make sure I don't nod off mid-feed and suffocate him (particular fear, there).
But these are vastly outweighed by the good bits. In some ways, even the difficult bits are good. One of our friends watched me calmly dealing with an incident involving a variety of bodily fluids and observed that he'd rarely seen me so happy. I am happy. I'm happy because I know I'm good with babies, I'm confident about what I'm doing, I'm well supported by Steve and by my friends, and everything is going well.
What else to tell you...
The birth was by planned caesarean, which went well. We cannot praise the NHS staff enough - from the first booking appointment with the midwife at 10 weeks pregnant, to the theatre team, to the still ongoing postnatal care from the Health Visitor, everyone we've dealt with was professional and supportive. A particular mention has to go to everyone at Swan Ward at Warwick Hospital, from the lady with the tea trolley to the ward manager, they were compassionate and friendly and helpful. We thanked them all profusely and heard in response a lot of variations on a theme of "well, that's my job..." no. There's ways and ways of doing your job. Steve and I feel like we got absolute gold standard care, and never doubted that the three of us were safe.
Lovely though everyone was at the hospital, it was still a hospital so I was very glad to be discharged just 50 hours after surgery. Steve had a full two weeks of paternity leave, which we definitely needed. We went out several times, and since he's gone back to work, Jamie and I have continued to go out with PA support. Every time we leave the house Jamie seems to make new friends - in supermarkets, in cafes, in the library, in the park, always there are strangers marvelling at him. It's making me feel better to be out and about after so much of my pregnancy was spent confined to base.
The PA support is working out well. The golden rule is that the PAs Must Not Do Childcare. They must not, to give a specific example, change a nappy. But they can and do lift the baby onto the change table; if I have a moment and need to stop mid-change they can hold onto him and make sure he doesn't roll off while I pull myself together; and at the end of a shift they go through my "replenish list" to make sure that there are enough nappies (and cotton wool and wipes and cream and a fresh outfit and a few other bits and bobs) in various strategic locations within my reach to see me through until Steve gets home or the next shift starts.
Every day, I feel glad we did this, pleased with how it is going so far, and hopeful about the future of our little family.
Saturday, September 26, 2015
Phew!
Excellent news this week - Social Services have managed to put a care package in place for me as I transition to parenthood.
The remaining three weeks of pregnancy (plus the two weeks of Steve's paternity leave) there's not really any notable change from my existing care package. My understanding is that they are taking the view that if I've survived pregnancy for 36 weeks on my existing arrangement I will survive the rest.
I disagree with this. I have been horribly isolated and largely housebound during my pregnancy, because I've had to abandon my former activities as I've needed to use up so many of my hours on support for/transport to medical and social services appointments and trying to get the baby essentials in place. We've been extremely lucky in that I haven't had the sort of complications that lead to weekly appointments or all-day clinics. I've also been unable to participate in a number of the recommended activities that I had been hoping to engage with during pregnancy, such as swimming/aquanatal, antenatal exercise/social groups, shopping events that offer discounts on baby equipment, etc.
Plus of course, in this final month, my body is drastically changed and the baby is getting noticeably bigger week by week. We took 30 weeks to get to 3lbs, but only another 4 weeks to get from there to 4.5lbs, and by 39 weeks we should be between 6 and 8lbs. I'm huge! I can't lie on my front or my back any more! I don't dare lie down on the sofa while I'm alone in the house because I can't get back up! I need to wee all the time and I haven't got my stairlift yet! There's not enough room in my belly to eat a proper main meal, I'm supposed to be eating several smaller ones throughout the day but I don't have support to do that! If pregnancy is a marathon, the last bit of it is seriously uphill compared to the previous months!
The failure/refusal of social services to properly support my needs during pregnancy has caused a loss of freedom and has had a documented impact on my mental health (as well as, to a less dramatic extent, my physical health), and that baby and I have "survived" has had more to do with luck and favours than any idea that my support package has been adequate.
However, I have a choice. I can spend the next three weeks struggling to cope AND struggling to fight with social services for resources which, even if I technically win, won't possibly be in place before the birth. Alternatively, I can spend the next three weeks struggling to cope AND trying to focus on thinking the happiest thoughts I can, resting as much as possible, and trying to be ready for what happens once the baby arrives.
And this is the really good news. Once the baby is outside me and Steve has gone back to work, social services have granted me 40 hours per week of support.
It doesn't mean I'll have someone here all the time - Steve works more than 40 hours each week and there's commuting time as well. But if I structure it as two shifts totalling 8 hours a day, 5 days a week, and if I'm careful about making sure that at the end of each PA shift baby and I are safely set up with everything we'll need in the next hour or so to hand, then it will work.
I can feel safe.
Of course it isn't indefinite. The plan is to review it every two weeks (I admit to wondering if this will be two calendar weeks, or a social services "two weeks") and to reduce the package as I recover from the surgery, baby gets the hang of feeding, the medical appointments peter out, a routine begins to develop.
But that's okay. I can go into surgery to have the baby knowing that, at least while the stitches are in, someone will be around to help me fulfil my role as a parent. The first month, which I anticipate as being the most difficult, I will be supported.
I had been so scared that they were going to wait until an actual crisis occurred, that either the baby or I would have to be hospitalised to "prove" that we needed help before any help would be forthcoming. Or, perhaps worse, that the baby and toddler years would be like the pregnancy - baby and I would be trapped at home struggling to do anything more than survive, but that with luck and favours and Steve turning himself inside out we'd scrape along *just* well enough that no red flags would be raised, leading to a situation that never improved and a child who started school with all sorts of disadvantages because I had never been supported to provide them with proper pre-school education, socialisation, nutrition, exercise...
Instead, I have a chance. I *will* be adequately supported for that first month and probably for the second month as well. If I can use that time to engage with the Health Visitors, if I can develop attendance at the breastfeeding groups and other baby activities, if I can demonstrate that I'm eating well, if I can line classes and activities up for 2016, then I will be in a strong position to argue that I need to continue with those things to fulfil my parenting role.
The remaining three weeks of pregnancy (plus the two weeks of Steve's paternity leave) there's not really any notable change from my existing care package. My understanding is that they are taking the view that if I've survived pregnancy for 36 weeks on my existing arrangement I will survive the rest.
I disagree with this. I have been horribly isolated and largely housebound during my pregnancy, because I've had to abandon my former activities as I've needed to use up so many of my hours on support for/transport to medical and social services appointments and trying to get the baby essentials in place. We've been extremely lucky in that I haven't had the sort of complications that lead to weekly appointments or all-day clinics. I've also been unable to participate in a number of the recommended activities that I had been hoping to engage with during pregnancy, such as swimming/aquanatal, antenatal exercise/social groups, shopping events that offer discounts on baby equipment, etc.
Plus of course, in this final month, my body is drastically changed and the baby is getting noticeably bigger week by week. We took 30 weeks to get to 3lbs, but only another 4 weeks to get from there to 4.5lbs, and by 39 weeks we should be between 6 and 8lbs. I'm huge! I can't lie on my front or my back any more! I don't dare lie down on the sofa while I'm alone in the house because I can't get back up! I need to wee all the time and I haven't got my stairlift yet! There's not enough room in my belly to eat a proper main meal, I'm supposed to be eating several smaller ones throughout the day but I don't have support to do that! If pregnancy is a marathon, the last bit of it is seriously uphill compared to the previous months!
The failure/refusal of social services to properly support my needs during pregnancy has caused a loss of freedom and has had a documented impact on my mental health (as well as, to a less dramatic extent, my physical health), and that baby and I have "survived" has had more to do with luck and favours than any idea that my support package has been adequate.
However, I have a choice. I can spend the next three weeks struggling to cope AND struggling to fight with social services for resources which, even if I technically win, won't possibly be in place before the birth. Alternatively, I can spend the next three weeks struggling to cope AND trying to focus on thinking the happiest thoughts I can, resting as much as possible, and trying to be ready for what happens once the baby arrives.
And this is the really good news. Once the baby is outside me and Steve has gone back to work, social services have granted me 40 hours per week of support.
It doesn't mean I'll have someone here all the time - Steve works more than 40 hours each week and there's commuting time as well. But if I structure it as two shifts totalling 8 hours a day, 5 days a week, and if I'm careful about making sure that at the end of each PA shift baby and I are safely set up with everything we'll need in the next hour or so to hand, then it will work.
I can feel safe.
Of course it isn't indefinite. The plan is to review it every two weeks (I admit to wondering if this will be two calendar weeks, or a social services "two weeks") and to reduce the package as I recover from the surgery, baby gets the hang of feeding, the medical appointments peter out, a routine begins to develop.
But that's okay. I can go into surgery to have the baby knowing that, at least while the stitches are in, someone will be around to help me fulfil my role as a parent. The first month, which I anticipate as being the most difficult, I will be supported.
I had been so scared that they were going to wait until an actual crisis occurred, that either the baby or I would have to be hospitalised to "prove" that we needed help before any help would be forthcoming. Or, perhaps worse, that the baby and toddler years would be like the pregnancy - baby and I would be trapped at home struggling to do anything more than survive, but that with luck and favours and Steve turning himself inside out we'd scrape along *just* well enough that no red flags would be raised, leading to a situation that never improved and a child who started school with all sorts of disadvantages because I had never been supported to provide them with proper pre-school education, socialisation, nutrition, exercise...
Instead, I have a chance. I *will* be adequately supported for that first month and probably for the second month as well. If I can use that time to engage with the Health Visitors, if I can develop attendance at the breastfeeding groups and other baby activities, if I can demonstrate that I'm eating well, if I can line classes and activities up for 2016, then I will be in a strong position to argue that I need to continue with those things to fulfil my parenting role.
Wednesday, September 23, 2015
The Nursery
I don't want to give the impression that this pregnancy is all about doom, gloom and disappointment about disability-related problems. One of the most enjoyable things that we've done has been to prepare the nursery for the baby.
Six months ago, I wouldn't have even dreamed of calling it a nursery. It was a boxroom. Because a defining feature of the room was that since even before I moved into this house, it was full, and I mean full, wall to wall and floor to ceiling, of boxes. Occasionally Steve would have a brief flurry of activity to reduce the amount of Stuff in there - most notably, when we got three big Billy Bookcases for the living room and the boxes of books that had been hidden away for years finally got a more appropriate home - but every three steps forwards seemed to be followed by two steps back as we needed *somewhere* to put an unwanted gift, or a bag of clothes for the charity shop, or a broken Whatever that needed to be taken to the tip "at some point, but not right now, because they're closed/it's raining/we're busy/etc, let's just pop it in the boxroom for now so it's out of the way."
Even as late as June, in a discussion about nursery plans with other women who are due to have babies in October, I somewhat resignedly posted this:
But by early July we were able to get to the window and in mid-July, we bought paint. By the end of July, the walls were starting to look like this:
Steve did the big roller work, the magnolia and the blue. I did the clouds, freehand, using a sponge. It took quite a while to get them *all* done - obviously I could only do very short sessions and only while someone was able to help me on and off my table (a ladder is more traditional but would have been asking for trouble). But I was so happy with how it came out, and it meant a lot to me to have done them myself.
Painting complete, I was able to go ahead and order new blinds, and a new carpet too (plug goes here for Godiva Carpets, a local firm who provided excellent customer service, fast fuss-free fitting, and competitive pricing). A set of flatpack drawers was assembled, and is now filled with washed and folded vests, babygros, sheets, blankets, little hats, tiny mittens and other assortedness. The Big Cot has been assembled too, although at the moment the mattress is still in the wrapper and my hospital bag is sitting on top of it, because at first the baby will sleep in our room. And then to top it off, my mother found some monkey decals online.
It's unequivocally a nursery now. Steve and I both like going in there just for the reassurance of it, that it is a completed project that's ready for Offspring, one that doesn't have to be a second-rate panic solution cobbled together at the last moment. It feels good.
Six months ago, I wouldn't have even dreamed of calling it a nursery. It was a boxroom. Because a defining feature of the room was that since even before I moved into this house, it was full, and I mean full, wall to wall and floor to ceiling, of boxes. Occasionally Steve would have a brief flurry of activity to reduce the amount of Stuff in there - most notably, when we got three big Billy Bookcases for the living room and the boxes of books that had been hidden away for years finally got a more appropriate home - but every three steps forwards seemed to be followed by two steps back as we needed *somewhere* to put an unwanted gift, or a bag of clothes for the charity shop, or a broken Whatever that needed to be taken to the tip "at some point, but not right now, because they're closed/it's raining/we're busy/etc, let's just pop it in the boxroom for now so it's out of the way."
Even as late as June, in a discussion about nursery plans with other women who are due to have babies in October, I somewhat resignedly posted this:
If it helps, ours still looks like a boxroom half-full of junk. I’ve given up on “beautiful” and am prepared to settle for just being able to get the carpet cleaned before the baby is here.
But by early July we were able to get to the window and in mid-July, we bought paint. By the end of July, the walls were starting to look like this:
Steve did the big roller work, the magnolia and the blue. I did the clouds, freehand, using a sponge. It took quite a while to get them *all* done - obviously I could only do very short sessions and only while someone was able to help me on and off my table (a ladder is more traditional but would have been asking for trouble). But I was so happy with how it came out, and it meant a lot to me to have done them myself.
Painting complete, I was able to go ahead and order new blinds, and a new carpet too (plug goes here for Godiva Carpets, a local firm who provided excellent customer service, fast fuss-free fitting, and competitive pricing). A set of flatpack drawers was assembled, and is now filled with washed and folded vests, babygros, sheets, blankets, little hats, tiny mittens and other assortedness. The Big Cot has been assembled too, although at the moment the mattress is still in the wrapper and my hospital bag is sitting on top of it, because at first the baby will sleep in our room. And then to top it off, my mother found some monkey decals online.
It's unequivocally a nursery now. Steve and I both like going in there just for the reassurance of it, that it is a completed project that's ready for Offspring, one that doesn't have to be a second-rate panic solution cobbled together at the last moment. It feels good.
Monday, September 21, 2015
An Update
In my last few posts, I talked about three major obstacles to the baby preparations.
One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.
Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.
I'm gradually getting used to it and I think it's going to meet my needs well.
There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.
At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.
Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...
On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.
Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.
We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.
We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.
There were two problems with that.
One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.
The other was that the date they were suggesting was the actual date for which my caesarean is booked.
After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.
I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.
One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.
Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.
I'm gradually getting used to it and I think it's going to meet my needs well.
There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.
At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.
Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...
On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.
Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.
We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.
We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.
There were two problems with that.
One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.
The other was that the date they were suggesting was the actual date for which my caesarean is booked.
After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.
I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.
Sunday, July 26, 2015
Wheelchairs
As most people who know me are aware, I currently have Alber E-Motion M15 power assisted wheels and I have loved them for every minute of the five years I've had them.
I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.
Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.
I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.
We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.
One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.
A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.
The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.
This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.
The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.
Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.
The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!
Part 1 Part 2
I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.
Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.
I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.
We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.
One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.
A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.
The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.
This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.
The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.
Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.
The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!
Part 1 Part 2
Stairlift
I've been supposed to have a stairlift for quite some time now. But what with the insecurity of living in a rented house, and sharing that house with a non-disabled person who likes to run up and down the stairs unimpeded, we never went ahead with it. I carried on going up stairs on all fours, coming down stairs on my bum, and sitting halfway up/down the stairs having a little rest when necessary. It was okay. I'm under 35 and not exactly frail, I've got solid young bones and plenty of padding on them. When I fall down the stairs, so far nothing worse has happened than some cuts, bruises, grazes and/or carpet burn, maybe a bit of damaged clothing, and whatever I was carrying taking a brief flying lesson.
As you can imagine, being pregnant - having a baby on the inside for now and knowing that once the baby is on the outside I still need to get both of us up and down the stairs safely - changes the goalposts somewhat. All of a sudden I'm a lot less flippant about falls. On top of which, as my bump gets bigger, it becomes physically more awkward (and eventually will be full-on impossible) for me to go up on hands and knees or rest halfway if I need to. Steve and I agreed that pregnancy would make us concede to the stairlift.
(At this point well-meaning people tend to sagely advise us that we should move house to a bungalow. Leaving aside the implied insult that we are too stupid to have thought of such a thing, the trouble with bungalows becomes apparent when you try to actually *get* one. Social housing bungalows are too small, privately rented bungalows are too expensive, purchasing a bungalow is out of our reach, and all types of bungalow are very rare. We do search occasionally, but in every category those few that come up and look like they might meet our needs tend to, on further investigation, be on special zones or estates that exclude us with rules stating they are only available to over-55s or that children are not permitted.)
The delays and difficulties with Social Services meant that I was 21 weeks pregnant before the Housing OT Gatekeeper phoned me - and promptly advised that a stairlift would take at least six months to sort out, which isn't a useful answer to someone who needs to be baby-ready in four months. Happily I was able to persuade her to refer it upwards, with the result that she phoned me the next morning and I got an appointment to see the OT at 23 weeks.
The OT was lovely, as OTs tend to be. Along with various other things, including a referral to a specialist OT service for disabled parents elsewhere in the country, she agreed that a stairlift was required ASAP, and since it was therefore a prescribed item rather than a personal choice, gave us a financial assessment form.
Financial assessments are conducted differently by different departments. They all have different criteria. For example, at present, I'm not eligible for welfare because as a household we have earned income - but I don't have to pay for my basic care package because that is calculated on savings, investments, assets, property, trust funds, etc, with our earned income from our current work being disregarded. For a Disabled Facilities Grant, which is what would normally pay for a stairlift... everyone had assumed that we'd be eligible, but it turns out we're not eligible due to Steve's earnings.
Which means we (meaning he) will have to fund the stairlift privately.
Which will be about £5,000.
There's no choice though. We don't have a downstairs loo and there's nowhere we could put a commode downstairs, therefore if we want me to be able to use the loo with hygiene and privacy, which in the UK is considered a pretty fundamental necessity for anyone, let alone a pregnant woman or new mother, we need a stairlift.
At 26 weeks the OT came back with a couple of engineers in tow to measure things and pull faces, and the proper final itemised quote should be with us by 28 weeks.
They tell me there's then a 6-8 week wait after I get the quote, confirm the order and stump up the deposit before work can start. The particular parts for my particular measurements and prescription need to be shipped in and then of course the relevant engineers must be booked. That will bring us to 36 weeks or as near full-term as makes no difference, or to put it another way, I might end up using a bucket in the lounge after all, or trying to find the money to allow me to spend what should be the "nesting" period in an accessible hotel room. I guess the best case scenario is that if I go into early labour, they might not be able to release me and baby from hospital until the house is habitable.
That the delays and heel-dragging of social services in the first half of my pregnancy has resulted in my basic predictable needs for the final stages being cut this fine makes me even more upset than the money aspect.
Part 1 Part 3
As you can imagine, being pregnant - having a baby on the inside for now and knowing that once the baby is on the outside I still need to get both of us up and down the stairs safely - changes the goalposts somewhat. All of a sudden I'm a lot less flippant about falls. On top of which, as my bump gets bigger, it becomes physically more awkward (and eventually will be full-on impossible) for me to go up on hands and knees or rest halfway if I need to. Steve and I agreed that pregnancy would make us concede to the stairlift.
(At this point well-meaning people tend to sagely advise us that we should move house to a bungalow. Leaving aside the implied insult that we are too stupid to have thought of such a thing, the trouble with bungalows becomes apparent when you try to actually *get* one. Social housing bungalows are too small, privately rented bungalows are too expensive, purchasing a bungalow is out of our reach, and all types of bungalow are very rare. We do search occasionally, but in every category those few that come up and look like they might meet our needs tend to, on further investigation, be on special zones or estates that exclude us with rules stating they are only available to over-55s or that children are not permitted.)
The delays and difficulties with Social Services meant that I was 21 weeks pregnant before the Housing OT Gatekeeper phoned me - and promptly advised that a stairlift would take at least six months to sort out, which isn't a useful answer to someone who needs to be baby-ready in four months. Happily I was able to persuade her to refer it upwards, with the result that she phoned me the next morning and I got an appointment to see the OT at 23 weeks.
The OT was lovely, as OTs tend to be. Along with various other things, including a referral to a specialist OT service for disabled parents elsewhere in the country, she agreed that a stairlift was required ASAP, and since it was therefore a prescribed item rather than a personal choice, gave us a financial assessment form.
Financial assessments are conducted differently by different departments. They all have different criteria. For example, at present, I'm not eligible for welfare because as a household we have earned income - but I don't have to pay for my basic care package because that is calculated on savings, investments, assets, property, trust funds, etc, with our earned income from our current work being disregarded. For a Disabled Facilities Grant, which is what would normally pay for a stairlift... everyone had assumed that we'd be eligible, but it turns out we're not eligible due to Steve's earnings.
Which means we (meaning he) will have to fund the stairlift privately.
Which will be about £5,000.
There's no choice though. We don't have a downstairs loo and there's nowhere we could put a commode downstairs, therefore if we want me to be able to use the loo with hygiene and privacy, which in the UK is considered a pretty fundamental necessity for anyone, let alone a pregnant woman or new mother, we need a stairlift.
At 26 weeks the OT came back with a couple of engineers in tow to measure things and pull faces, and the proper final itemised quote should be with us by 28 weeks.
They tell me there's then a 6-8 week wait after I get the quote, confirm the order and stump up the deposit before work can start. The particular parts for my particular measurements and prescription need to be shipped in and then of course the relevant engineers must be booked. That will bring us to 36 weeks or as near full-term as makes no difference, or to put it another way, I might end up using a bucket in the lounge after all, or trying to find the money to allow me to spend what should be the "nesting" period in an accessible hotel room. I guess the best case scenario is that if I go into early labour, they might not be able to release me and baby from hospital until the house is habitable.
That the delays and heel-dragging of social services in the first half of my pregnancy has resulted in my basic predictable needs for the final stages being cut this fine makes me even more upset than the money aspect.
Part 1 Part 3
Not 24 weeks
I don't know if anyone was watching closely enough to notice, but there has been no 24 week update, and there is also no 24 week picture, and now I am just over 27 weeks pregnant.
This is largely because there's been just too much other stuff to deal with. All three of us are healthy (usual parameters), no emergencies, just... Stuff.
The first bit of the Stuff is Social Services.
This was very much a planned baby, and part of the planning was getting input from Social Services before trying to conceive. I'm pleased to say that we got a good, positive response. We were reassured that we had an absolute right to a family life, and that Social Services would support us to meet not just basic survival needs, but also to fulfil my role as a parent. The child is not automatically considered "at risk" and if I struggled to meet the child's needs then before Child Social Services would even consider getting involved, Adult Social Services would need to have done everything possible to enable me to look after the child myself. Specifically I was told that instead of my case remaining effectively "closed" (as it is while a person is stable and their needs are being met by their existing care package), once I informed them of a pregnancy I would be on the active caseload of a named Social Worker, they would review me every three months during pregnancy and the first year of the baby's life, or more frequently if necessary, and as such my care package could be altered according to the rapidly changing circumstances.
That filled us with confidence and we went ahead. Spool forward to Spring 2015. Eight weeks pregnant, I met "my" social worker, and we got on well. She was every bit as positive. We decided that she would line up all the various referrals to Occupational Therapy and Independent Living and so on, but given my history we would wait until my 12-week scan before forging ahead, to save on upsetting encounters if anything went wrong.
So, after my 12-week (actually 13 and a bit) scan, I phoned her office... was told she was off sick but would be in touch when she got back the next week. Nothing happened. Phoned again at 17 weeks... was told she was off sick but would be back the next week. Nothing happened. Phoned again at 19 weeks... was told she was off sick and they didn't know when she would be back. I pointed out that the baby was not going to wait indefinitely until "my" social worker was back and asked if I could be transferred to someone else's caseload. The answer was no, but that a Duty Social Worker would call me back.
(Duty Social Workers are to named social workers as duty GPs are to named GPs. They're fully qualified, and authorised to open and read confidential client files and take necessary action. But they're supposed to deal with that day's emergencies and situations requiring an immediate response, not ongoing or future care requiring familiarity with the case or time for research about a specialist situation - and they prioritise their time, so if you *can* wait until tomorrow, the chances are you will.)
Nothing happened. At 21 weeks, I phoned again and explained that pregnancy is only supposed to last 40 weeks, so the baby was more than half-way here, I was having increasing difficulty doing things and that while I appreciated I wasn't an absolute emergency, I really quite urgently needed to hear from a social worker if we were going to avoid me AND the baby becoming one.
Finally, two days after that, a Duty Social Worker called me. He'd opened my file; he'd seen that "my" social worker had been intending to start off a number of referrals as soon as I'd had my 12-week scan but that she'd gone off sick before this could happen; he agreed to authorise and send off those referrals, marked as Urgent in an effort to catch up to where we should be. However, "my" social worker was expected back within a couple of weeks, so they couldn't transfer me to anyone else's caseload or conduct a reassessment.
I was really pleased that things were moving at last, but of course that was when the challenges really started. Because I had no social worker to oversee things or fight my corner, I had to try and comprehend the whole system myself. First getting past gatekeepers, then being referred on to yet more people or organisations, and trying to keep track and make sense of who everyone is, when I see them, what their remits are... I'll go into more detail in another post.
At 22 weeks, someone from Independent Living saw me and agreed to formally refer me to be reassessed by a social worker. At 23 weeks, she phoned me back and told me that the referral had been postponed because they wouldn't transfer me to another caseload, because "my" social worker was off sick but would be back in two weeks. Does this sound familiar? Can you guess what happened? That's right, two weeks later (25 weeks) I was told that "my" social worker was still off sick! But, obviously, they couldn't transfer me to someone else's caseload, because she would likely be back in two weeks!
*headdesk* *headdesk* *headdesk*
Thankfully by this point my list of "two weeks" was long enough that it was conceded I could be reassessed the following week by a Duty Social Worker for my third trimester needs. Her findings would be submitted to a panel who would decide what help I would get.
I honestly felt sorry for that Duty Social Worker. I think like many social workers she went into the profession wanting to make things better for people, but... she was visibly stressed and very disillusioned. I had prepared notes ahead of the meeting with an outline of the sort of bare-minimum support I felt I would need. The moment that has stayed with me is the moment when she sighed and said "I don't think you'll get this. Do you really want me to ask?"
Outwardly I replied that yes, I wanted her to ask, because if she didn't ask, then I definitely wouldn't get it!
Inwardly I curled up in a terrified ball. At 26 weeks, the baby was already wiggling so much that the movements could be felt from the outside, and if anything went wrong, there would be a chance of both of us surviving it. There is no turning back. I'd only started on this journey after getting reassurance that it would be okay - I thought I had been as responsible as possible in ensuring that if I ever did have a child I would be able to provide a decent level of parenting. And now here was a social worker who, in contrast to the positivity of those I saw pre-conception and at 8 weeks, was so doubtful about the likelihood of me getting support that she didn't even want to ask the panel for it.
She also let us know that it would be at least a week before she got the chance to type up the reassessment. In an effort to do something positive, I offered to send her my notes to save her some typing time. Then, before sending them, I spent a couple of days going through them, being rather more specific about the help I need, why I need it, what the risk factors are if I do not have that help, how I am currently struggling/failing to meet this or that criteria because of lack of help. But it is not a positive experience to spend days thinking intensively about the things you will struggle or outright fail to do for your child due to lack of resources that you reasonably believed you would have.
The only other positive I can draw from that meeting is that the Duty Social Worker didn't seem to disagree that I would need the help I said I would. She just feels that with austerity, social workers' requests get turned down more than they might have done a couple of years ago, and she doesn't like it when the panel say "no" to her.
At this stage, there's not much I can do about Social Services other than hope that the Duty Social Worker manages to persuade herself to present my case, and that the panel respond favourably to the information. It will be at least another couple of weeks of hoping before I hear back.
Meanwhile, there's still more than enough to keep me occupied with stairlifts and wheelchairs...
This is largely because there's been just too much other stuff to deal with. All three of us are healthy (usual parameters), no emergencies, just... Stuff.
The first bit of the Stuff is Social Services.
This was very much a planned baby, and part of the planning was getting input from Social Services before trying to conceive. I'm pleased to say that we got a good, positive response. We were reassured that we had an absolute right to a family life, and that Social Services would support us to meet not just basic survival needs, but also to fulfil my role as a parent. The child is not automatically considered "at risk" and if I struggled to meet the child's needs then before Child Social Services would even consider getting involved, Adult Social Services would need to have done everything possible to enable me to look after the child myself. Specifically I was told that instead of my case remaining effectively "closed" (as it is while a person is stable and their needs are being met by their existing care package), once I informed them of a pregnancy I would be on the active caseload of a named Social Worker, they would review me every three months during pregnancy and the first year of the baby's life, or more frequently if necessary, and as such my care package could be altered according to the rapidly changing circumstances.
That filled us with confidence and we went ahead. Spool forward to Spring 2015. Eight weeks pregnant, I met "my" social worker, and we got on well. She was every bit as positive. We decided that she would line up all the various referrals to Occupational Therapy and Independent Living and so on, but given my history we would wait until my 12-week scan before forging ahead, to save on upsetting encounters if anything went wrong.
So, after my 12-week (actually 13 and a bit) scan, I phoned her office... was told she was off sick but would be in touch when she got back the next week. Nothing happened. Phoned again at 17 weeks... was told she was off sick but would be back the next week. Nothing happened. Phoned again at 19 weeks... was told she was off sick and they didn't know when she would be back. I pointed out that the baby was not going to wait indefinitely until "my" social worker was back and asked if I could be transferred to someone else's caseload. The answer was no, but that a Duty Social Worker would call me back.
(Duty Social Workers are to named social workers as duty GPs are to named GPs. They're fully qualified, and authorised to open and read confidential client files and take necessary action. But they're supposed to deal with that day's emergencies and situations requiring an immediate response, not ongoing or future care requiring familiarity with the case or time for research about a specialist situation - and they prioritise their time, so if you *can* wait until tomorrow, the chances are you will.)
Nothing happened. At 21 weeks, I phoned again and explained that pregnancy is only supposed to last 40 weeks, so the baby was more than half-way here, I was having increasing difficulty doing things and that while I appreciated I wasn't an absolute emergency, I really quite urgently needed to hear from a social worker if we were going to avoid me AND the baby becoming one.
Finally, two days after that, a Duty Social Worker called me. He'd opened my file; he'd seen that "my" social worker had been intending to start off a number of referrals as soon as I'd had my 12-week scan but that she'd gone off sick before this could happen; he agreed to authorise and send off those referrals, marked as Urgent in an effort to catch up to where we should be. However, "my" social worker was expected back within a couple of weeks, so they couldn't transfer me to anyone else's caseload or conduct a reassessment.
I was really pleased that things were moving at last, but of course that was when the challenges really started. Because I had no social worker to oversee things or fight my corner, I had to try and comprehend the whole system myself. First getting past gatekeepers, then being referred on to yet more people or organisations, and trying to keep track and make sense of who everyone is, when I see them, what their remits are... I'll go into more detail in another post.
At 22 weeks, someone from Independent Living saw me and agreed to formally refer me to be reassessed by a social worker. At 23 weeks, she phoned me back and told me that the referral had been postponed because they wouldn't transfer me to another caseload, because "my" social worker was off sick but would be back in two weeks. Does this sound familiar? Can you guess what happened? That's right, two weeks later (25 weeks) I was told that "my" social worker was still off sick! But, obviously, they couldn't transfer me to someone else's caseload, because she would likely be back in two weeks!
*headdesk* *headdesk* *headdesk*
Thankfully by this point my list of "two weeks" was long enough that it was conceded I could be reassessed the following week by a Duty Social Worker for my third trimester needs. Her findings would be submitted to a panel who would decide what help I would get.
I honestly felt sorry for that Duty Social Worker. I think like many social workers she went into the profession wanting to make things better for people, but... she was visibly stressed and very disillusioned. I had prepared notes ahead of the meeting with an outline of the sort of bare-minimum support I felt I would need. The moment that has stayed with me is the moment when she sighed and said "I don't think you'll get this. Do you really want me to ask?"
Outwardly I replied that yes, I wanted her to ask, because if she didn't ask, then I definitely wouldn't get it!
Inwardly I curled up in a terrified ball. At 26 weeks, the baby was already wiggling so much that the movements could be felt from the outside, and if anything went wrong, there would be a chance of both of us surviving it. There is no turning back. I'd only started on this journey after getting reassurance that it would be okay - I thought I had been as responsible as possible in ensuring that if I ever did have a child I would be able to provide a decent level of parenting. And now here was a social worker who, in contrast to the positivity of those I saw pre-conception and at 8 weeks, was so doubtful about the likelihood of me getting support that she didn't even want to ask the panel for it.
She also let us know that it would be at least a week before she got the chance to type up the reassessment. In an effort to do something positive, I offered to send her my notes to save her some typing time. Then, before sending them, I spent a couple of days going through them, being rather more specific about the help I need, why I need it, what the risk factors are if I do not have that help, how I am currently struggling/failing to meet this or that criteria because of lack of help. But it is not a positive experience to spend days thinking intensively about the things you will struggle or outright fail to do for your child due to lack of resources that you reasonably believed you would have.
The only other positive I can draw from that meeting is that the Duty Social Worker didn't seem to disagree that I would need the help I said I would. She just feels that with austerity, social workers' requests get turned down more than they might have done a couple of years ago, and she doesn't like it when the panel say "no" to her.
At this stage, there's not much I can do about Social Services other than hope that the Duty Social Worker manages to persuade herself to present my case, and that the panel respond favourably to the information. It will be at least another couple of weeks of hoping before I hear back.
Meanwhile, there's still more than enough to keep me occupied with stairlifts and wheelchairs...
Friday, June 19, 2015
20 Weeks
My 20 week scan was a couple of weeks ago and everything was more or less exactly as it should be. Here's the picture:
The scan took quite a bit longer than the 12-week one, but it wasn't really a hardship gazing at the image of Offspring while a sonographer pointed out all the various organs that were positioned and working exactly as they should be. The baby was awake and wiggling at first, but seemed to fall asleep while the checks were being done on the head and face area, and then absolutely would not move to allow the sonographer to check the kidneys. In the end I was sent to the loo in the hope that it would wake the baby up enough to move just a little, which worked, but only just. That was a good thing too, though, as it enabled Steve to feel a certain amount of paternal pride that his child is taking after him.
The baby was measuring just a couple of days smaller than the exact average, but still well within the healthy/average range. From what we were told, the important bit is that a baby's growth is proportional all over, and a couple of days is neither here nor there.
Of course we're both completely besotted. Every hand or foot was without question the most wonderful hand or foot ever to have been seen, because sure, most babies probably have hands and feet, but no matter what their parents think, Steve and I know for a fact that these hands and feet are just cuter.
And here's the outside view at 20 weeks:
(I decided to ditch the leggings-and-vest combo for the photos. It made me too self-conscious and it's not like the internet really needs another exact sequence of matching bump pictures. It's also not like there are any other photos of me while I'm pregnant, so I'd rather that I'm happy with the ones that do exist.)
20 weeks marks the half-way point of pregnancy and we might have made a bigger deal of it if we hadn't spent the last few weeks grumbling along with a horrible cold, which was not only giving us bunged up noses and sore throats during the day, but also causing us to more or less continuously wake each other up throughout the night with coughing fits. It's better now, though, so I'm trying to think more about the end of this month, which will mark the point at which, should this baby try to appear early, it would be considered viable and have a chance of survival outside the womb.
The scan took quite a bit longer than the 12-week one, but it wasn't really a hardship gazing at the image of Offspring while a sonographer pointed out all the various organs that were positioned and working exactly as they should be. The baby was awake and wiggling at first, but seemed to fall asleep while the checks were being done on the head and face area, and then absolutely would not move to allow the sonographer to check the kidneys. In the end I was sent to the loo in the hope that it would wake the baby up enough to move just a little, which worked, but only just. That was a good thing too, though, as it enabled Steve to feel a certain amount of paternal pride that his child is taking after him.
The baby was measuring just a couple of days smaller than the exact average, but still well within the healthy/average range. From what we were told, the important bit is that a baby's growth is proportional all over, and a couple of days is neither here nor there.
Of course we're both completely besotted. Every hand or foot was without question the most wonderful hand or foot ever to have been seen, because sure, most babies probably have hands and feet, but no matter what their parents think, Steve and I know for a fact that these hands and feet are just cuter.
And here's the outside view at 20 weeks:
(I decided to ditch the leggings-and-vest combo for the photos. It made me too self-conscious and it's not like the internet really needs another exact sequence of matching bump pictures. It's also not like there are any other photos of me while I'm pregnant, so I'd rather that I'm happy with the ones that do exist.)
20 weeks marks the half-way point of pregnancy and we might have made a bigger deal of it if we hadn't spent the last few weeks grumbling along with a horrible cold, which was not only giving us bunged up noses and sore throats during the day, but also causing us to more or less continuously wake each other up throughout the night with coughing fits. It's better now, though, so I'm trying to think more about the end of this month, which will mark the point at which, should this baby try to appear early, it would be considered viable and have a chance of survival outside the womb.
Sunday, May 31, 2015
Wee!
Someone once told me that their overriding experience of pregnancy was going hither and yon with a handbag full of wee, ready to give to whoever asked for it next.
At the moment I'd say there are quite a few things registering rather more strongly on my radar, but I couldn't go so far as to say she was wrong.
Certainly the approach to wee seems to be quite different when it comes to obstetrics, compared to any other department I've dealt with. In obstetrics, it's all about the wee. Seriously. You must turn up to every appointment with a urine sample, or a full bladder, or both. I have an appointment coming up to discuss birth options with my consultant, but I had to contact the hospital to find out what the appointment was for and who it was with, because the only details anyone saw fit to include in the appointment letter were the time/date/location and the necessity of bringing wee. I'm not even sure why wee would be relevant to that appointment. Maybe it's just a standard line on their appointment letter template.
The response to a sample is different too. In other departments, you slightly shyly proffer your sample and say something like "do I give this to you?" and the doctor or nurse either says "yes, I can take that," or "no, hang on to that and give it to (person)." In obstetrics, almost without fail, the response is a gleeful "ooh, yes please! We love wee!" and do you know what's really upsetting? That's not even bothering me any more.
At the moment I'd say there are quite a few things registering rather more strongly on my radar, but I couldn't go so far as to say she was wrong.
Certainly the approach to wee seems to be quite different when it comes to obstetrics, compared to any other department I've dealt with. In obstetrics, it's all about the wee. Seriously. You must turn up to every appointment with a urine sample, or a full bladder, or both. I have an appointment coming up to discuss birth options with my consultant, but I had to contact the hospital to find out what the appointment was for and who it was with, because the only details anyone saw fit to include in the appointment letter were the time/date/location and the necessity of bringing wee. I'm not even sure why wee would be relevant to that appointment. Maybe it's just a standard line on their appointment letter template.
The response to a sample is different too. In other departments, you slightly shyly proffer your sample and say something like "do I give this to you?" and the doctor or nurse either says "yes, I can take that," or "no, hang on to that and give it to (person)." In obstetrics, almost without fail, the response is a gleeful "ooh, yes please! We love wee!" and do you know what's really upsetting? That's not even bothering me any more.
Saturday, May 09, 2015
16 Weeks
Time for another monthly bump pic. Well, 4-weekly. Ish. Week 12 turned out to be almost-week-13 and this is week 16-and-a-bit. It seems so strange to think that I'm almost four months along. Every day of it has taken an age and yet part of me is thinking I can't have been pregnant that long! Steve's preferred method of tracking our progress is a percentage counter to the due date, which today tells us we're at 40%, which seems very substantial. Another alternative would be to take the long view - I'll likely live another fifty years, and worry about my Offspring every single day of that, so right now, at 16 weeks pregnant, I'm not even 1% of the way through.
Nevertheless. I'm actually going to post two pictures. Here's the official one:
... which I don't really like. Taking these pictures against the bookcase and wearing the same outfit seemed like such a good way to definitely be able to see the progress. Instead, the outfit makes me feel self-conscious about my body and I think that's the first thing that comes across in the picture. I'm overweight and most of that weight is in the areas least flattered by leggings. The leggings were a sensible choice in that I should be able to wear them all through pregnancy but I don't want to be wearing that worried, how-enormous-does-my-bum-look grimace all the way through the record of my pregnancy.
I prefer this picture:
... where you can actually see that there *is* a bump now. It's not huge, granted, but this weekend is the point at which my favourite jeans no longer fit comfortably and I have two small but definite stretch marks. Bumpage is definitely there. Also, while it's still not a photo that makes me look good, I'm giving the bump a cuddle and genuinely smiling about it. So in many ways, this is a much more accurate bump picture, if we're going for experience rather than pure size.
Hopefully there will exist some other happy pictures of me while I'm pregnant. A friend very kindly passed along some really nice maternity clothes which feel comfortable to wear and make me look pregnant rather than fat. There's supposed to be a lot of growing over the next few weeks, so my hope is that we go on plenty of little jaunts out and about in the sunshine during the early summer. We have a trip to Eden coming up as well.
Meanwhile I need to decide whether to give up on continuity and do the 4-weekly bump pictures in different outfits (and possibly places), or if I declare that I've Started So By The Gods I'll Finish Dammit with the vest/leggings/bookcase combo. Input welcomed!
Nevertheless. I'm actually going to post two pictures. Here's the official one:
... which I don't really like. Taking these pictures against the bookcase and wearing the same outfit seemed like such a good way to definitely be able to see the progress. Instead, the outfit makes me feel self-conscious about my body and I think that's the first thing that comes across in the picture. I'm overweight and most of that weight is in the areas least flattered by leggings. The leggings were a sensible choice in that I should be able to wear them all through pregnancy but I don't want to be wearing that worried, how-enormous-does-my-bum-look grimace all the way through the record of my pregnancy.
I prefer this picture:
... where you can actually see that there *is* a bump now. It's not huge, granted, but this weekend is the point at which my favourite jeans no longer fit comfortably and I have two small but definite stretch marks. Bumpage is definitely there. Also, while it's still not a photo that makes me look good, I'm giving the bump a cuddle and genuinely smiling about it. So in many ways, this is a much more accurate bump picture, if we're going for experience rather than pure size.
Hopefully there will exist some other happy pictures of me while I'm pregnant. A friend very kindly passed along some really nice maternity clothes which feel comfortable to wear and make me look pregnant rather than fat. There's supposed to be a lot of growing over the next few weeks, so my hope is that we go on plenty of little jaunts out and about in the sunshine during the early summer. We have a trip to Eden coming up as well.
Meanwhile I need to decide whether to give up on continuity and do the 4-weekly bump pictures in different outfits (and possibly places), or if I declare that I've Started So By The Gods I'll Finish Dammit with the vest/leggings/bookcase combo. Input welcomed!
Friday, May 08, 2015
Testing
The other day I blogged about my private scan, and the joy of it, but also my misgivings about the way private healthcare uses fearmongering to boost profits - in this instance, by telling pregnant women that "time was running out" for them to get tests not routinely offered by the NHS.
These misgivings are reinforced when I'm on forums with parents-to-be from other countries who are dependent on less-than-stellar private healthcare packages and are having to approach all tests from a position of "can we afford it?"
So I feel wonderfully lucky to have the NHS, offering testing and screening and scanning and measuring for all sorts of things. Obviously (I hope obviously) I'm entirely against the idea of aborting a foetus for having a disability. On the other hand, I think it's a damn good idea to know if there's a treatable medical issue endangering the life of the mother or the baby. On the other other hand, screening tests are imperfect (screening determines only likely/unlikely, secondary testing is required to obtain a yes/no) and being told your pregnancy is "high risk" for something can cause a great deal of often-unnecessary worry. On the other other other hand, I can really see the logic of being able to research and prepare ahead of time for a baby which will have complex needs from birth...
It's an incredibly tangled and emotive issue, and one that it's very difficult to discuss without encountering distressing invective about disability, abortion, women's rights to make decision about their own bodies, shaming, blaming, name-calling and all sorts of other unsavouriness.
Weirdly, for me the decision has been made vastly simpler by being disabled. I know ahead of time that when I get past, say, week 38 of 40, I'm going to become difficult. At the absolute very minimum, once the baby is born and I'm on the ward, I'm going to need my wheelchair and/or walking frame beside the bed - and every disabled person reading knows that hospitals don't like you bringing your own (I think it's a philosophical problem as much as a space and hygiene issue). When I use that wheelchair or walking frame to get to the loo, I'm going to need the staff on the ward to understand that it's not appropriate to tell me that having had a baby doesn't make me disabled and to just walk properly. I may have to determine whether my PA counts as a visitor because while I'm wiped out I'll need advocacy. There's all sorts of stuff, none of it insurmountable, but all of it needing to be addressed.
So, up until the point at which I really really need to raise my head above the parapet and start being (what I fear will be construed as) fussy and awkward, I feel I should be as compliant as possible with the non-invasive testing. Build up my credit, sort of thing. For every single test, the accompanying leaflet reminds you that you have the right to refuse, but I feel that it will serve me better not to have "refused testing!!!" or worse, "has internet access" written on my notes, you know?
These misgivings are reinforced when I'm on forums with parents-to-be from other countries who are dependent on less-than-stellar private healthcare packages and are having to approach all tests from a position of "can we afford it?"
So I feel wonderfully lucky to have the NHS, offering testing and screening and scanning and measuring for all sorts of things. Obviously (I hope obviously) I'm entirely against the idea of aborting a foetus for having a disability. On the other hand, I think it's a damn good idea to know if there's a treatable medical issue endangering the life of the mother or the baby. On the other other hand, screening tests are imperfect (screening determines only likely/unlikely, secondary testing is required to obtain a yes/no) and being told your pregnancy is "high risk" for something can cause a great deal of often-unnecessary worry. On the other other other hand, I can really see the logic of being able to research and prepare ahead of time for a baby which will have complex needs from birth...
It's an incredibly tangled and emotive issue, and one that it's very difficult to discuss without encountering distressing invective about disability, abortion, women's rights to make decision about their own bodies, shaming, blaming, name-calling and all sorts of other unsavouriness.
Weirdly, for me the decision has been made vastly simpler by being disabled. I know ahead of time that when I get past, say, week 38 of 40, I'm going to become difficult. At the absolute very minimum, once the baby is born and I'm on the ward, I'm going to need my wheelchair and/or walking frame beside the bed - and every disabled person reading knows that hospitals don't like you bringing your own (I think it's a philosophical problem as much as a space and hygiene issue). When I use that wheelchair or walking frame to get to the loo, I'm going to need the staff on the ward to understand that it's not appropriate to tell me that having had a baby doesn't make me disabled and to just walk properly. I may have to determine whether my PA counts as a visitor because while I'm wiped out I'll need advocacy. There's all sorts of stuff, none of it insurmountable, but all of it needing to be addressed.
So, up until the point at which I really really need to raise my head above the parapet and start being (what I fear will be construed as) fussy and awkward, I feel I should be as compliant as possible with the non-invasive testing. Build up my credit, sort of thing. For every single test, the accompanying leaflet reminds you that you have the right to refuse, but I feel that it will serve me better not to have "refused testing!!!" or worse, "has internet access" written on my notes, you know?
Wednesday, May 06, 2015
Private scan
A bit of a catch-up post, this one.
I never thought of myself as the sort of person who would opt for private healthcare. I think the NHS is a brilliant service. The pregnancy related care I have received has been wonderful, and at very difficult and distressing times of my life I have appreciated that I'm not getting a hefty bill alongside my bad news. Add to that the number of people I know whose lives have been improved or outright saved by the NHS, and... I love the NHS. It's large, imperfect, underfunded, understaffed, and awesome.
The first twelve weeks of pregnancy, dated from the first day of your last period, are when the chances of miscarriage are highest - as high as 30% for week 5 (that's the week you miss your period), then the graph curves down, 25%, 20%, 10%, until you get to week 12 when you're down to 1 or 2%. Unless there's a good medical reason to do an early scan, such as starting to bleed or being in a car crash, your first regularly-scheduled NHS scan happens when you are between 11 and 14 weeks pregnant.
By week 8 (three weeks after positive pregnancy test), Steve and I were feeling anxious, but not quite worried enough to start asking for an early scan. I didn't have any panic-worthy symptoms and it must be said that the waiting room of the Early Pregnancy Unit, populated as it is by nervous and upset women who are facing, going through, or have been through a really horrible experience, is not a place anyone would choose to be. And yet, the idea of waiting another 3-6 weeks before we would learn whether I was carrying a viable embryo, or a dead one that would need intervention to eject, was quite nerve-wracking. To make it nice and circular, I then started to worry that if my embryo was healthy then I might be harming it simply by fretting.
Week 9, we caved. The grand sum of £85, which we are currently privileged to be in a position to afford, would buy us a viability scan at a small private clinic a couple of towns away. I squared it in my head by classing it, not as "healthcare", but as an "extra". Sort of like how physiotherapy at a hospital is healthcare for medical reasons, and a massage at a beauty parlour, while having some superficial similarities, is an extra to help you relax.
I had my scan at one day shy of 10 weeks, and Steve and I still consider it the absolute best money we ever spent. Of course we might have felt differently if the outcome had been bad, but as it was... within a few seconds the sonographer had found the heartbeat, which we were able to hear as well as see, on the screen, both the little white shape of the heart itself pumping away, and a more familiar-looking chart of the spikes. The stress just melted off both of us. There followed about two minutes of just watching as various parts of the embryo, placenta, and my innards were shown to us and measured while the sonographer kept repeating wonderful, wonderful phrases like "that all looks fine" and "that's exactly where it should be" plus of course "there's definitely only one in there". Then - possibly in response to the change in my body chemistry as stress and nerves turned into euphoria and relaxation - the embryo started to move, really quite energetically. Arms and legs wiggled about, the head moved, the spine flexed, and Steve and I just sat/lay there utterly entranced.
To make it even better, the fee included not only a few printout pictures, but a DVD which was basically a screencast from the sonographer's computer for the whole scan. We must have watched it dozens of times in the first week, especially the little wiggly dance - if it was a VHS tape that segment would be getting worn out by now.
But then... then, they had to go and remind me why I love the NHS. In the folder with our details, DVD and pictures were some other leaflets. One was a price list of the other services they offer, which is fair enough, they are after all a commercial enterprise. Some of the others though, had pictures of pregnant women with clocks superimposed on their bumps, and dire warnings about how such-and-such a test is not routinely offered on the NHS and time is running out and if you're a responsible parent then really you should be paying hundreds of pounds for these extra tests! For me, this was just going too far and was everything I dislike about private healthcare. Letting me pay money to ease my own non-substantiated fears was one thing. Trying to introduce new fears to make a quick buck, with the added element of shaming those who can't just splash a spare £500... it left a really nasty taste in my mouth.
But the DVD...! I just keep coming back to it. My NHS scan at 13 weeks was every bit as wonderful in terms of seeing the foetus, and the room was comfortable, and the NHS sonographer was friendly and skilled and explained to us all sorts of interesting things, but while we happily paid the £10 for some printout pictures there was a fervent wish that we could take footage home to watch again and again. At the moment Steve and I are trying to decide whether we look into getting another private scan done at some point. We're just not sure if we'll be able to explain that no, we're not looking for testing or diagnosis or gender or anything that specific really, we just want another bit of footage of our offspring waving and the little heartbeat pulsing.
I never thought of myself as the sort of person who would opt for private healthcare. I think the NHS is a brilliant service. The pregnancy related care I have received has been wonderful, and at very difficult and distressing times of my life I have appreciated that I'm not getting a hefty bill alongside my bad news. Add to that the number of people I know whose lives have been improved or outright saved by the NHS, and... I love the NHS. It's large, imperfect, underfunded, understaffed, and awesome.
The first twelve weeks of pregnancy, dated from the first day of your last period, are when the chances of miscarriage are highest - as high as 30% for week 5 (that's the week you miss your period), then the graph curves down, 25%, 20%, 10%, until you get to week 12 when you're down to 1 or 2%. Unless there's a good medical reason to do an early scan, such as starting to bleed or being in a car crash, your first regularly-scheduled NHS scan happens when you are between 11 and 14 weeks pregnant.
By week 8 (three weeks after positive pregnancy test), Steve and I were feeling anxious, but not quite worried enough to start asking for an early scan. I didn't have any panic-worthy symptoms and it must be said that the waiting room of the Early Pregnancy Unit, populated as it is by nervous and upset women who are facing, going through, or have been through a really horrible experience, is not a place anyone would choose to be. And yet, the idea of waiting another 3-6 weeks before we would learn whether I was carrying a viable embryo, or a dead one that would need intervention to eject, was quite nerve-wracking. To make it nice and circular, I then started to worry that if my embryo was healthy then I might be harming it simply by fretting.
Week 9, we caved. The grand sum of £85, which we are currently privileged to be in a position to afford, would buy us a viability scan at a small private clinic a couple of towns away. I squared it in my head by classing it, not as "healthcare", but as an "extra". Sort of like how physiotherapy at a hospital is healthcare for medical reasons, and a massage at a beauty parlour, while having some superficial similarities, is an extra to help you relax.
I had my scan at one day shy of 10 weeks, and Steve and I still consider it the absolute best money we ever spent. Of course we might have felt differently if the outcome had been bad, but as it was... within a few seconds the sonographer had found the heartbeat, which we were able to hear as well as see, on the screen, both the little white shape of the heart itself pumping away, and a more familiar-looking chart of the spikes. The stress just melted off both of us. There followed about two minutes of just watching as various parts of the embryo, placenta, and my innards were shown to us and measured while the sonographer kept repeating wonderful, wonderful phrases like "that all looks fine" and "that's exactly where it should be" plus of course "there's definitely only one in there". Then - possibly in response to the change in my body chemistry as stress and nerves turned into euphoria and relaxation - the embryo started to move, really quite energetically. Arms and legs wiggled about, the head moved, the spine flexed, and Steve and I just sat/lay there utterly entranced.
To make it even better, the fee included not only a few printout pictures, but a DVD which was basically a screencast from the sonographer's computer for the whole scan. We must have watched it dozens of times in the first week, especially the little wiggly dance - if it was a VHS tape that segment would be getting worn out by now.
But then... then, they had to go and remind me why I love the NHS. In the folder with our details, DVD and pictures were some other leaflets. One was a price list of the other services they offer, which is fair enough, they are after all a commercial enterprise. Some of the others though, had pictures of pregnant women with clocks superimposed on their bumps, and dire warnings about how such-and-such a test is not routinely offered on the NHS and time is running out and if you're a responsible parent then really you should be paying hundreds of pounds for these extra tests! For me, this was just going too far and was everything I dislike about private healthcare. Letting me pay money to ease my own non-substantiated fears was one thing. Trying to introduce new fears to make a quick buck, with the added element of shaming those who can't just splash a spare £500... it left a really nasty taste in my mouth.
But the DVD...! I just keep coming back to it. My NHS scan at 13 weeks was every bit as wonderful in terms of seeing the foetus, and the room was comfortable, and the NHS sonographer was friendly and skilled and explained to us all sorts of interesting things, but while we happily paid the £10 for some printout pictures there was a fervent wish that we could take footage home to watch again and again. At the moment Steve and I are trying to decide whether we look into getting another private scan done at some point. We're just not sure if we'll be able to explain that no, we're not looking for testing or diagnosis or gender or anything that specific really, we just want another bit of footage of our offspring waving and the little heartbeat pulsing.
Friday, May 01, 2015
BADD 2015: Progress
Written for Blogging Against Disablism Day 2015.
Years ago, I participated in BADD 2009 with this post about an offensive blog comment I had received. The commenter had noticed that, participating in a Bucket List style meme that was going around at the time, I'd mentioned that having a child was among the things I would like to do. She felt it her duty to inform me in no uncertain terms that it would be "cruel" of me to inflict my "seriously broken" self on a child and instructed me to "stay on birth control and accept (my) fate" of not being a parent.
It wasn't the first time I'd had to put up with that kind of garbage. In the earlier years of my illness, in an exchange I've never quite managed to get over, my sister had somewhat triumphantly told me that now I was sick I would "just have to give up" on my lifelong hope to one day have a family. When I made a slightly stunned effort to assert that disabled people could still have children and that as long as I secured the right support it would be possible, suggesting an au pair as just one potential option, my mother joined in with the marvellous line "why have kids if someone else is going to raise them?"
After having to deal with attitudes like that from my own family, I wasn't exactly going to be left devastated by a semi-anonymous blog commenter. On the contrary, having the attack coming from someone I didn't know meant that I finally had a chance to reply without worrying about the feelings of the person who'd just insulted me. But I was still a little bit concerned about what sort of response there might be, considering how BADD posts tend to get rather more exposure.
The support from the online disability community took my breath away. People were angry right along with me. Directly and indirectly, via comments and emails, parents shared their stories - not sugar-coated success stories or bitter tragedy ones, but real stories including the hard work AND the joys and achievements involved. The BADD archive, for every year since 2006, offered a category of posts on "parenting issues", both for disabled parents and for parents of a disabled child. Not to mention all the posts in other categories, written by disabled parents but not about parenting!
I felt more encouraged, rather than less. I learned about all sorts of little tricks, suggestions, ideas, and resources (although if anyone can suggest an active non-Facebook replacement for the sadly now defunct Disabled Parents Network, it'd be a help). I was able to access publications written for disabled parents telling me what sort of support I should be able to expect from Social Services, and how to go about accessing it. Sure enough, I spoke to Social Services and got written confirmation that I would be supported in my parenting role. I'm also pleased to say that having this more concrete grasp of what I'm doing appears to have enabled me to put my family's fears and prejudices to rest.
In October 2015 Steve and I are expecting that baby. We are confident. Our baby, our so very wanted baby, will arrive and will be loved and cared for, and part of that is due to the hope and practical help that BADD unlocks.
Friday, April 24, 2015
Pregnancy announcement
It is with great joy that Steve and I are able to announce that we are expecting a child, due in October.
This is a wanted baby, and a very carefully planned one. Without going into too many gory details, it's been a bit of a long and turbulent journey getting here. But worth it - although I still reserve the right to occasionally sound off about how tired/sore/fat I'm feeling! Just take it as a given that no matter what else I say, I'm also feeling fortunate, happy, and excited.
So, this is 14 weeks, out of a potential 40 +/-2 weeks, which means we're a third of the way there and safely out of the high-risk miscarriage zone. While there's no such thing as a guarantee, our risk has plummeted into the tiny-fractions-of-percents and we can feel confident that by November we'll be a family of three.
That said, it sometimes feels a little bit abstract at the moment. On an intellectual level I understand what's going on, and I can look at my scan pictures and my maternity notes and see that everything is just as it should be, confirmed and verified in multiple ways. But as an issue of belief, I'm kind of struggling to believe that we've finally been that lucky and that I won't wake up tomorrow and it not be true.
You see, during the first trimester there wasn't really much doubt about whether I was pregnant or not. All things considered I didn't have a particularly bad time, but the symptoms were definitely there, more or less all the time. My boobs were growing, my mood and appetite were all over the place, I was feeling (although thankfully not really being) sick most of the time, and of course the tiredness goes without saying. I could feel that I was pregnant.
Now, the baby is properly anchored in, the placenta is up and running, I've got used to the bigger boobs, and everything has become much easier than it was a month ago. But at the same time, I don't yet have a pregnancy bump to speak of, I'm still wearing all the same jeans I was wearing last year, and I can't feel any movements yet.
Trying to remember that the little wriggling creature they showed me on the screen is actually doing all that wriggling inside me, and it's not microscopic or anything, it's already more than 8cm long from crown to rump, and my uterus is the size of a grapefruit, and I definitely didn't dream it... feels weird, in a "who am I trying to convince?" kind of way.
The other problem with the current lack of bump is that there's this hormone called relaxin, which loosens up the muscles, joints and ligaments in the pelvis and stomach area so that everything can get out of the way of the growing uterus. My relaxin is doing a brilliant job, which means that what muscle tone I had around my stomach has just gone blup. It's not that I was very fit beforehand, I was overweight and I know that, but this just looks like I ate way too much pizza. Glamorous it is not.
Nevertheless, this picture has to exist so that the proper-bump ones over the next few months have something to be compared to!
This is a wanted baby, and a very carefully planned one. Without going into too many gory details, it's been a bit of a long and turbulent journey getting here. But worth it - although I still reserve the right to occasionally sound off about how tired/sore/fat I'm feeling! Just take it as a given that no matter what else I say, I'm also feeling fortunate, happy, and excited.
So, this is 14 weeks, out of a potential 40 +/-2 weeks, which means we're a third of the way there and safely out of the high-risk miscarriage zone. While there's no such thing as a guarantee, our risk has plummeted into the tiny-fractions-of-percents and we can feel confident that by November we'll be a family of three.
That said, it sometimes feels a little bit abstract at the moment. On an intellectual level I understand what's going on, and I can look at my scan pictures and my maternity notes and see that everything is just as it should be, confirmed and verified in multiple ways. But as an issue of belief, I'm kind of struggling to believe that we've finally been that lucky and that I won't wake up tomorrow and it not be true.
You see, during the first trimester there wasn't really much doubt about whether I was pregnant or not. All things considered I didn't have a particularly bad time, but the symptoms were definitely there, more or less all the time. My boobs were growing, my mood and appetite were all over the place, I was feeling (although thankfully not really being) sick most of the time, and of course the tiredness goes without saying. I could feel that I was pregnant.
Now, the baby is properly anchored in, the placenta is up and running, I've got used to the bigger boobs, and everything has become much easier than it was a month ago. But at the same time, I don't yet have a pregnancy bump to speak of, I'm still wearing all the same jeans I was wearing last year, and I can't feel any movements yet.
Trying to remember that the little wriggling creature they showed me on the screen is actually doing all that wriggling inside me, and it's not microscopic or anything, it's already more than 8cm long from crown to rump, and my uterus is the size of a grapefruit, and I definitely didn't dream it... feels weird, in a "who am I trying to convince?" kind of way.
The other problem with the current lack of bump is that there's this hormone called relaxin, which loosens up the muscles, joints and ligaments in the pelvis and stomach area so that everything can get out of the way of the growing uterus. My relaxin is doing a brilliant job, which means that what muscle tone I had around my stomach has just gone blup. It's not that I was very fit beforehand, I was overweight and I know that, but this just looks like I ate way too much pizza. Glamorous it is not.
Nevertheless, this picture has to exist so that the proper-bump ones over the next few months have something to be compared to!
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