Hey guys!
I wanted to do a quick blog this week as it was one year ago tomorrow (19th December 2018) that we found out I was pregnant. Whilst we kept it a secret from everyone except close family and friends until the 12 week scan in February, the planning began the day I took the test because of my pre-existing medical conditions and the medications I was taking.
I remember spending this week a year ago on the phone to numerous medical professionals trying to ascertain when I needed to be seen and by whom. I didn’t fit into any of the categories for early review by an obstetrician. It was also tricky as none of the doctors could definitively say whether my medication was safe in pregnancy due to a lack of research. I stopped it the day I found out and I am pleased that, thanks to regular horse riding, I have not needed to re-start the muscle relaxant.
Many people doubted whether I would cope with a baby. I must admit I wasn’t worried about actually managing as a mummy, I was more concerned about the pregnancy and birth. I just didn’t think my body would manage carrying a baby to full term and giving birth without any medical intervention. Well, I proved myself wrong by carrying Arthur to what is classed as full term and by pushing him out independently in just 25 minutes. It’s amazing what even a body damaged by cancer and cancer treatment can do. I hope that any doubts people may have had about me being a parent have also disappeared thanks to my regular blogs and Facebook updates showing how I am managing with just 4 hours of carer support each day in the week. The Carer’s do not do any changing, washing, or feeding for Arthur. I do all of these tasks. They assist me with household tasks such as cleaning, washing, and getting out and about. At weekends Louie is home and, from speaking to friends with children, it seems he doesn’t do anything extra for Arthur that any other Dad wouldn’t do. So all in all I think I’m doing well really and the main thing is Arthur is a happy boy.
I still can’t believe that one year down the line from finding out I had defied the odds and become the first neuroblastoma survivor to fall pregnant naturally, I’m sat here in bed with my gorgeous baby sitting on my lap, asleep with his head on my chest. He loves this position. It looks so uncomfortable but it never fails to settle him. Most babies like being walked around but he’s not fussed by this, he much prefers the notion of the wheelchair.
So since I last blogged we had Arthur’s kidney scan results. He does have a duplex kidney and one is smaller than the other. However, they both seem to be working properly. The consultant suggested doing a scan to assess if the smaller kidney is functioning less when compared with the larger kidney. This scan involves injecting dye into the vein and doing an MRI scan. I raised concern about this with the consultant as I want to avoid any unnecessary procedures for him. I don’t want him constantly being poked and prodded like I was as a child. I asked the consultant what the results may show and what each possible result would result in treatment wise. She said that unless Arthur was portraying any symptoms, even if the smaller kidney wasn’t working so well, no intervention would be required. I therefore voiced concern that the scan may not be necessary at this stage and she could understand my views. He is therefore going to have his kidneys scanned with ultrasound next year instead as this is non-invasive. My other reason for wanting to avoid radioactive dye unless required is that radiation can be associated with neuroblastoma, the cancer I had as a child. Whilst Arthur’s risk is no higher than any other baby’s risk, I still want to keep it minimal. Ifvhecdidvdevelopvsymptoms, I would of course follow any medical advice given but at the moment the consultant agrees the scan is not necessary and is just done as a way to be fully informed. She has reassured me that both of his kidneys are working well and she is not concerned. After all, if it hadn’t been for my disability and the need for extra growths cans, we would never have known about the anomalies that are believed to be present in 1 percent of the population.
Also since my last blog, I travelled to Plymouth and back on the train with Arthur. Apart from a poo explosion just as Louie dropped us off and having to change Arthur across 2 seats due to not being able to reach the changing unit and apart from a track defect meaning we had to get off a stop earlier than planned on the way back and be put in a taxi, it went well. As ever, Arthur was a good boy and didn’t cry at all. He enjoyed seeing family and friends and I now feel we can go anywhere on the train.
We are spending Christmas in Plymouth with my family. Elsa our cat will be coming too. The car will be quite full but there’s nowhere else I’d want to spend Arthur’s first Christmas.
We’ve finished baby sensory until next term and we have just completed a baby massage course which was useful. I hope to take Arthur to a music class next term
I am thinking of doing future blogs as videos. This will make it easier to fully explain myself and Arthur can take part too. If anyone has any questions or issue they would like me to discuss, please just comment below.
Have a wonderful Christmas all. Arthur’s Christmas Day outfit came today (thanks Grandma) so watch out for Facebook photos.
Lots of love to you all. Xxx
Wednesday, December 18, 2019
Saturday, October 26, 2019
Hi everyone
I hope you are all well.
I thought now might be a good time to do a blog as Louie has now been back at work for 2 weeks so I have started to get into a ‘sort of’ routine. A few people have asked how I do certain tasks for Arthur now Louie is out 10 hours a day and given that I have just 4 hours of care a day. I thought I would blog about my daily routine so that people can understand how I do certain things that may seem impossible to those who haven’t spent their lives having to think carefully about doing the simplest of tasks.
So before we go to bed each night Louie makes sure I have sterilised bottles ready for the night so I don’t have to go downstairs on the lift. I have the milk machine upstairs on the landing. However, Arthur has now mastered breastfeeding and this is what he does most nights now so I don’t have to get up. I also pump out milk before I go to bed so he can have that if he needs a little top up. So it’s rare I have to get up and make a formula bottle. I do all of the night feeds now Louie is at work and I keep nappies under Arthur’s crib so I can change him without going to the nursery. It all works well and he only really wakes up twice a night for a feed.
Louie goes to work at 7.45 and we are usually still asleep. I stay upstairs until 10ish when the Carer comes. I just chill with Arthur in bed or if we are awake, I take him to the nursery to get him dressed. So one question people have asked is how I do this? It’s a multi-step process. Arthur is usually in my bed at this point. I pick him up, move him down the bed by stretching out my arms whilst holding him. I reach as far as I can and put him down on the bed as near to the end as possible. I then shuffle down the bed myself, pick him up again, put him further down the bed, and shuffle towards him until we reach the end of the bed. My chair is at the end as the crib is next to the head of the bed. I then climb Into my chair (trying not to squash Elsa the cat who is usually in bed with us). Once in my chair, I pick up Arthur from the bed. Now he is stronger and able to hold his head he sits on my lap with his back to me. I hold him securely with one hand and wheel with the other hand, pulling on door frames and walls if necessary. We eventually get to the nursery and I get him undressed. I go to the bathroom and fill the top and tail bowl to give him a wash. I carry it back to his room on my lap and try not to spill it whilst I am wheeling myself. I give him a wash before dressing him. If he needs a bath, I wait for the Carer. I get in the bath myself and they pass him to me. This is much safer than me leaning over the bath.
We then either go out to the shops or the stables. We go in the Carer’s car or a taxi. We went to baby group for the first time this week. This involves sitting on the floor. I am lucky to be able to climb out of my chair to the floor. Arthur sits in his car seat whilst I do this. I then pick him up from his seat and we participate in the group. He loved it so much. There is a break between activities and we are asked to move around the room to use the toys such as ball pit and baby mats. Like the other mums I can move round on my bottom but, unlike the other Mums, I can’t use my legs to move so have to use my arms to move on the floor. My Carer has to carry Arthur then pass him back to me. At the end of the class I put Arthur in his seat on the floor then pull myself up into my chair. The class was really great. The lady running it offered to get me a table so icdidntvhavevtovgetvoncthrvfloor but I didn’t want this ad I wanted to be like the other Mums and for Arthur to be next to the other babies on the floor.
We then go home and the Carer leaves at 2. Wr stay downstairs on the sofa. I have the crib on which to change Arthur without going upstairs. I can use the sling to carry him upstairs if necessary but it’s just easier to stay downstairs. If I need the loo I go up on my lift. Arthur hates this because it takes a few minutes. Not as quick as running upstairs. Oh well, he can’t have Mummy all the time.
Louie comes home at 6ish. He cooks our dinner and he watches Arthur whilst I wash up. He then takes Arthur upstairs and he either has a bath with Louie or on his little seat. I then dry him on my lap and change him in his nursery. Louie then puts him in bed with me and I feed him before leaning over to put him on his crib.
We went to Plymouth for the first time a couple of weeks ago. Arthur met his great grandparents which was lovely. Mum and Dad’s house no longer has a stair lift so I climb up. Mum then put the Moses basket next to the bed so I could change and feed Arthur without getting out of bed. I then stayed downstairs the next day and friends came to visit which was nice. The car was very full going home as we had my chair, Arthur’s stuff, and Louie’s golf clubs and trolley. We got it all to fit though. We will do it all again at Christmas, this time with Elsa the cat too.
My next adventure is going to be getting the train home to Plymouth with Arthur one week. I will get Louie to take us to the station, Mum and Dad have a bed for Arthur and I can buy nappies, wipes, and other day to day stuff there. So it will only be our clothes and a change bag really. The assistance staff will get me on the train and it’s a straight train. There is a disabled toilet and I have tested the change unit so I know I can reach it. I will just have Arthur in a sling and we can just enjoy the trip. The station staff will then get us off using the ramp the other end. I think it will be good for me to go on a journey with him independently.
Our car failed it’s MOT yesterday so we have a hire car. We weren’t allowed to drive our car home so the Motability Scheme got us a taxi. Trying to get a taxi and hire car to fit a chair and car seat isn’t easy and I had to make about 20 phone calls. We got there in the end. The people I spoke to were surprised to hear I needed a car for a car seat and a wheelchair.
Anyway, I need to quickly get changed before Arthur wakes up.
Take care all. Xxx
I hope you are all well.
I thought now might be a good time to do a blog as Louie has now been back at work for 2 weeks so I have started to get into a ‘sort of’ routine. A few people have asked how I do certain tasks for Arthur now Louie is out 10 hours a day and given that I have just 4 hours of care a day. I thought I would blog about my daily routine so that people can understand how I do certain things that may seem impossible to those who haven’t spent their lives having to think carefully about doing the simplest of tasks.
So before we go to bed each night Louie makes sure I have sterilised bottles ready for the night so I don’t have to go downstairs on the lift. I have the milk machine upstairs on the landing. However, Arthur has now mastered breastfeeding and this is what he does most nights now so I don’t have to get up. I also pump out milk before I go to bed so he can have that if he needs a little top up. So it’s rare I have to get up and make a formula bottle. I do all of the night feeds now Louie is at work and I keep nappies under Arthur’s crib so I can change him without going to the nursery. It all works well and he only really wakes up twice a night for a feed.
Louie goes to work at 7.45 and we are usually still asleep. I stay upstairs until 10ish when the Carer comes. I just chill with Arthur in bed or if we are awake, I take him to the nursery to get him dressed. So one question people have asked is how I do this? It’s a multi-step process. Arthur is usually in my bed at this point. I pick him up, move him down the bed by stretching out my arms whilst holding him. I reach as far as I can and put him down on the bed as near to the end as possible. I then shuffle down the bed myself, pick him up again, put him further down the bed, and shuffle towards him until we reach the end of the bed. My chair is at the end as the crib is next to the head of the bed. I then climb Into my chair (trying not to squash Elsa the cat who is usually in bed with us). Once in my chair, I pick up Arthur from the bed. Now he is stronger and able to hold his head he sits on my lap with his back to me. I hold him securely with one hand and wheel with the other hand, pulling on door frames and walls if necessary. We eventually get to the nursery and I get him undressed. I go to the bathroom and fill the top and tail bowl to give him a wash. I carry it back to his room on my lap and try not to spill it whilst I am wheeling myself. I give him a wash before dressing him. If he needs a bath, I wait for the Carer. I get in the bath myself and they pass him to me. This is much safer than me leaning over the bath.
We then either go out to the shops or the stables. We go in the Carer’s car or a taxi. We went to baby group for the first time this week. This involves sitting on the floor. I am lucky to be able to climb out of my chair to the floor. Arthur sits in his car seat whilst I do this. I then pick him up from his seat and we participate in the group. He loved it so much. There is a break between activities and we are asked to move around the room to use the toys such as ball pit and baby mats. Like the other mums I can move round on my bottom but, unlike the other Mums, I can’t use my legs to move so have to use my arms to move on the floor. My Carer has to carry Arthur then pass him back to me. At the end of the class I put Arthur in his seat on the floor then pull myself up into my chair. The class was really great. The lady running it offered to get me a table so icdidntvhavevtovgetvoncthrvfloor but I didn’t want this ad I wanted to be like the other Mums and for Arthur to be next to the other babies on the floor.
We then go home and the Carer leaves at 2. Wr stay downstairs on the sofa. I have the crib on which to change Arthur without going upstairs. I can use the sling to carry him upstairs if necessary but it’s just easier to stay downstairs. If I need the loo I go up on my lift. Arthur hates this because it takes a few minutes. Not as quick as running upstairs. Oh well, he can’t have Mummy all the time.
Louie comes home at 6ish. He cooks our dinner and he watches Arthur whilst I wash up. He then takes Arthur upstairs and he either has a bath with Louie or on his little seat. I then dry him on my lap and change him in his nursery. Louie then puts him in bed with me and I feed him before leaning over to put him on his crib.
We went to Plymouth for the first time a couple of weeks ago. Arthur met his great grandparents which was lovely. Mum and Dad’s house no longer has a stair lift so I climb up. Mum then put the Moses basket next to the bed so I could change and feed Arthur without getting out of bed. I then stayed downstairs the next day and friends came to visit which was nice. The car was very full going home as we had my chair, Arthur’s stuff, and Louie’s golf clubs and trolley. We got it all to fit though. We will do it all again at Christmas, this time with Elsa the cat too.
My next adventure is going to be getting the train home to Plymouth with Arthur one week. I will get Louie to take us to the station, Mum and Dad have a bed for Arthur and I can buy nappies, wipes, and other day to day stuff there. So it will only be our clothes and a change bag really. The assistance staff will get me on the train and it’s a straight train. There is a disabled toilet and I have tested the change unit so I know I can reach it. I will just have Arthur in a sling and we can just enjoy the trip. The station staff will then get us off using the ramp the other end. I think it will be good for me to go on a journey with him independently.
Our car failed it’s MOT yesterday so we have a hire car. We weren’t allowed to drive our car home so the Motability Scheme got us a taxi. Trying to get a taxi and hire car to fit a chair and car seat isn’t easy and I had to make about 20 phone calls. We got there in the end. The people I spoke to were surprised to hear I needed a car for a car seat and a wheelchair.
Anyway, I need to quickly get changed before Arthur wakes up.
Take care all. Xxx
Saturday, October 5, 2019
Hey All,
I hope you are all well and enjoying the weekend.
Just a quick blog to keep you all updated on Arthur’s progress. He had his six week check about 2 weeks ago and all is well. He has put on lots of weight and he was a good boy during his vaccinations last Monday. They did make him feel a bit unwell so he was upset during the night but this is normal. We just aren’t used to him being upset as he’s normally quite easy going. He will have his next injections next month.
We went to the Cotswolds for our first night away this week. It took a bit of planning and the car was full with all his stuff and my wheelchair. The hotel said they had never had a wheelchair user who also needed a travel cot before. They upgraded us as the room we booked would have been too cramped for my chair and a cot. It turned out the travel cot didn’t work for us as I couldn’t lean down to floor level to lift him out in the night. Luckily Louie’s parents bought a Moses basket which was the same height as the bed. We will use this in future and when he grows out of it we will take his next to me crib.
I pumped out lots of milk because we didn’t want to take the Perfect Prep machine and lifting a heavy kettle is dangerous as it could fall on my lap. Arthur is getting a lot better at breastfeeding and he does more and more each day. I still like to pump though so I know what he’s getting.
Carrying cases to and from the car and hotel room was a bit more time consuming because we had extra bags for Arthur and his basket. Obviously I can’t help and Louie has to push me so he had to do a few trips. We managed and we had a lovely break away.
Arthur is so much more alert now and is interested in his surroundings. His grip and legs are so strong. All of these changes are reassuring for me as they suggest that the abnormalities on his brain scans were just anomalies that will not cause any issues.
People have commented that he looks bigger now. This is partly because he is long and my body is short so in photos he looks bigger. I’m still managing to lift him easily and I put him in the sling whilst I’m going round tidying etc.
One issue that may arise when Arthur gets heavier is lifting him from his bouncy chair. It is on the floor and although I can reach down at the moment and pick him up, this will soon not be safe. I wish there was a bouncy seat on a stand. Lifting from the play mat up into my chair is already too difficult so I get on the floor to play with him but I then have to lift him onto the sofa, get in my chair from the floor, and then pick him up from the sofa. I just have to find ways around things and I will have to think again when he starts moving. The bouncy seat is just more difficult because it’s not floor level but is low down.
Louie has one more week of paternity leave so we are popping to Plymouth to see friends and family. I am looking forward to introducing Arthur to my home town.
When Louie goes back to work I will start baby sensory and baby massage classes. I have been told I am the first Mum in a wheelchair to attend. Luckily I can climb on the floor to do the massage. I am excited to meet other Mums in my local area. My Carer’s will drive me there so at least I will have someone with me to help me if I can’t reach the changing unit or pick Arthur up from the floor.
I am taking part in a horse riding competition in November so I’m spending my riding lessons practising. It’s my little bit of me time in the week.
I will be in touch with you all soon.
Take care. Xxx
I hope you are all well and enjoying the weekend.
Just a quick blog to keep you all updated on Arthur’s progress. He had his six week check about 2 weeks ago and all is well. He has put on lots of weight and he was a good boy during his vaccinations last Monday. They did make him feel a bit unwell so he was upset during the night but this is normal. We just aren’t used to him being upset as he’s normally quite easy going. He will have his next injections next month.
We went to the Cotswolds for our first night away this week. It took a bit of planning and the car was full with all his stuff and my wheelchair. The hotel said they had never had a wheelchair user who also needed a travel cot before. They upgraded us as the room we booked would have been too cramped for my chair and a cot. It turned out the travel cot didn’t work for us as I couldn’t lean down to floor level to lift him out in the night. Luckily Louie’s parents bought a Moses basket which was the same height as the bed. We will use this in future and when he grows out of it we will take his next to me crib.
I pumped out lots of milk because we didn’t want to take the Perfect Prep machine and lifting a heavy kettle is dangerous as it could fall on my lap. Arthur is getting a lot better at breastfeeding and he does more and more each day. I still like to pump though so I know what he’s getting.
Carrying cases to and from the car and hotel room was a bit more time consuming because we had extra bags for Arthur and his basket. Obviously I can’t help and Louie has to push me so he had to do a few trips. We managed and we had a lovely break away.
Arthur is so much more alert now and is interested in his surroundings. His grip and legs are so strong. All of these changes are reassuring for me as they suggest that the abnormalities on his brain scans were just anomalies that will not cause any issues.
People have commented that he looks bigger now. This is partly because he is long and my body is short so in photos he looks bigger. I’m still managing to lift him easily and I put him in the sling whilst I’m going round tidying etc.
One issue that may arise when Arthur gets heavier is lifting him from his bouncy chair. It is on the floor and although I can reach down at the moment and pick him up, this will soon not be safe. I wish there was a bouncy seat on a stand. Lifting from the play mat up into my chair is already too difficult so I get on the floor to play with him but I then have to lift him onto the sofa, get in my chair from the floor, and then pick him up from the sofa. I just have to find ways around things and I will have to think again when he starts moving. The bouncy seat is just more difficult because it’s not floor level but is low down.
Louie has one more week of paternity leave so we are popping to Plymouth to see friends and family. I am looking forward to introducing Arthur to my home town.
When Louie goes back to work I will start baby sensory and baby massage classes. I have been told I am the first Mum in a wheelchair to attend. Luckily I can climb on the floor to do the massage. I am excited to meet other Mums in my local area. My Carer’s will drive me there so at least I will have someone with me to help me if I can’t reach the changing unit or pick Arthur up from the floor.
I am taking part in a horse riding competition in November so I’m spending my riding lessons practising. It’s my little bit of me time in the week.
I will be in touch with you all soon.
Take care. Xxx
Thursday, September 12, 2019
Evening friends
Arthur is currently having a nap so I thought I would take the opportunity to do a quick blog.
So, our baby is 6 weeks on Monday. It’s a strange feeling because on the one hand it feels like it’s gone quick but then again it feels like he’s been here forever! This might be because we were in hospital for so long.
We have been busy going on days out which have included Longleat Safari Park, Tinton Abbey, and a nearby farm to name just a few. We have also been out for lots of meals. Arthur is so good, he just sleeps in the sling. The farm had some bumpy paths but he really doesn’t care bless him, we just get the odd grunt to remind us he’s still there.
One thing that I hadn’t really thought of as being a difficulty for us was changing tables out and about. I managed to change him by myself in one public toilet (only to realise he hadn’t done a wee or poo) but I struggled in another toilet. Louie had to help but the only issue was that the changing unit was in the ladies. Oh well, the other ladies didn’t seem to mind.
The Health Visitor came today and is happy with us and no longer needs to visit. We are still measuring Arthur’s head to ensure his enlarged ventricle isn’t causing any issues. All is fine. We will continue doing this weekly until he is 3 months old. We had a letter to say one of his kidneys has an additional tube going into it but the doctor is confident this will not cause any problems and 1 percent of babies have this extra ureter. His kidneys will he scanned again at 3 months of age.
The Heath Visitor commented on how advanced his head control is for his young age. The consultant said she has seen this before with babies of Mum’s in wheelchairs. This is because they sit in slings on their Mum’s lap and look up which strengthens their neck muscles. Only a good thing.
I have been to the stables twice to groom my favourite pony and left Arthur with Louie. It was a strange feeling. I start riding again next week and Arthur is coming to watch. I can’t wait to feel the relief riding gives me. My muscles will feel much looser.
I am still managing to express breast milk and Arthur is now latching on for a few minutes a day. I hope to build this up gradually as he gets stronger. I just need to make sure he keeps gaining weight. He has grown out of his tiny baby grows now. I feel a bit sad but again I know this is a good sign.
We have had so many lovely cards, presents, and visitors. Arthur still has lots of people he needs to meet but he has been spoilt so far. We are very lucky.
Louie is off work until mid-October so we are looking forward to more days out in the next few weeks. We also plan to have a night away in the Cotswolds and in Plymouth next month. Squeezing a wheelchair and baby stuff for an overnight trip into the car will be a bit of a puzzle but we will get there and will keep you all updated.
We are lucky that most nights Arthur only wakes twice. He never screens even when hungry. The Health Visitor suspects he is used to the fact it takes me a bit longer to get to him and pick him up as she says this is often the case with babies and Mums with additional challenges.
I plan to contact a few charities such as the Neuroblastoma Society to raise further awareness of pregnancy and disabilities. My consultant thinks I am the first Mum to have had a baby following neuroblastoma. Hopefully the first of many. I also plan to start working with a charity to design some equipment to help me and other disabled Mums. I will keep you posted.
Anyway, lots of love to your all. Xxx
Arthur is currently having a nap so I thought I would take the opportunity to do a quick blog.
So, our baby is 6 weeks on Monday. It’s a strange feeling because on the one hand it feels like it’s gone quick but then again it feels like he’s been here forever! This might be because we were in hospital for so long.
We have been busy going on days out which have included Longleat Safari Park, Tinton Abbey, and a nearby farm to name just a few. We have also been out for lots of meals. Arthur is so good, he just sleeps in the sling. The farm had some bumpy paths but he really doesn’t care bless him, we just get the odd grunt to remind us he’s still there.
One thing that I hadn’t really thought of as being a difficulty for us was changing tables out and about. I managed to change him by myself in one public toilet (only to realise he hadn’t done a wee or poo) but I struggled in another toilet. Louie had to help but the only issue was that the changing unit was in the ladies. Oh well, the other ladies didn’t seem to mind.
The Health Visitor came today and is happy with us and no longer needs to visit. We are still measuring Arthur’s head to ensure his enlarged ventricle isn’t causing any issues. All is fine. We will continue doing this weekly until he is 3 months old. We had a letter to say one of his kidneys has an additional tube going into it but the doctor is confident this will not cause any problems and 1 percent of babies have this extra ureter. His kidneys will he scanned again at 3 months of age.
The Heath Visitor commented on how advanced his head control is for his young age. The consultant said she has seen this before with babies of Mum’s in wheelchairs. This is because they sit in slings on their Mum’s lap and look up which strengthens their neck muscles. Only a good thing.
I have been to the stables twice to groom my favourite pony and left Arthur with Louie. It was a strange feeling. I start riding again next week and Arthur is coming to watch. I can’t wait to feel the relief riding gives me. My muscles will feel much looser.
I am still managing to express breast milk and Arthur is now latching on for a few minutes a day. I hope to build this up gradually as he gets stronger. I just need to make sure he keeps gaining weight. He has grown out of his tiny baby grows now. I feel a bit sad but again I know this is a good sign.
We have had so many lovely cards, presents, and visitors. Arthur still has lots of people he needs to meet but he has been spoilt so far. We are very lucky.
Louie is off work until mid-October so we are looking forward to more days out in the next few weeks. We also plan to have a night away in the Cotswolds and in Plymouth next month. Squeezing a wheelchair and baby stuff for an overnight trip into the car will be a bit of a puzzle but we will get there and will keep you all updated.
We are lucky that most nights Arthur only wakes twice. He never screens even when hungry. The Health Visitor suspects he is used to the fact it takes me a bit longer to get to him and pick him up as she says this is often the case with babies and Mums with additional challenges.
I plan to contact a few charities such as the Neuroblastoma Society to raise further awareness of pregnancy and disabilities. My consultant thinks I am the first Mum to have had a baby following neuroblastoma. Hopefully the first of many. I also plan to start working with a charity to design some equipment to help me and other disabled Mums. I will keep you posted.
Anyway, lots of love to your all. Xxx
Tuesday, August 27, 2019
Mummy on Wheels.
Evening All,
Sorry it has been a while since my last blog. It has been a busy 25 days since our little Arthur was born.
As some of you may know from my Facebook posts, we stayed in hospital for 4 nights after Arthur’s birth so that he could be monitored to ensure he suffered from no withdrawal symptoms relating to the pain killers and muscle relaxants I took during pregnancy. The scoring system used by the NHS is out of 10. The doctors check for 10 symptoms including sweating, sneezing, irritability, and drowsiness. These checks are made 3 times each day for 5 days. If the baby scores 6 or higher then treatment is given. I am pleased to say that Arthur scores 0. Keeping my dosage of medication to a minimum during the pregnancy paid off as did the horse riding.
Whilst we were in hospital, Arthur had a brain scan to check on his ventricle size due to concerns raised during pregnancy scans. The scan following his birth showed one ventricle is ‘prominant’ However, there were no signs of blockages or damage to brain tissue. We have to measure Arthur’s head weekly for the next 12 weeks. Provided it does not grow more than a centimetre each week, there will be no further treatment. Doctors do not anticipate that Arthur will have any problems in the future.
The day we were discharged was a bit stressful as when I got home, I went to get on the stairlift to go upstairs and found it was not working. This is not ideal as we do not have a downstairs toilet. I don’t like Louie carrying me up and down the stairs in case we both fall. I therefore climbed up the stairs on my bottom with Louie in front of me. I then pulled myself from the floor to my wheelchair. Not great when you have given birth 4 days before but at least I didn’t need a C section. The engineers came at 8.30pm but after 2.5 hours of work, they still could not fix the issue. I therefore faced the prospect of spending the next few days trapped upstairs.
The midwife came to do a routine check the following day and found that Arthur had lost 15 percent of his body weight. We were therefore admitted back into hospital for 5 days in order to establish a feeding routine. I was breastfeeding but because Arthur had jaundice, he was too tired to suck for long periods so he now has a combination of breast milk from the breast and from a pump but with a formula top up. He is now doing well and is weighing heavier than his birth weight and his jaundice has resolved. I wish I could breast feed exclusively but he struggles to latch for long periods because he knows the bottle is the easy option. It’s ok because at least he is still getting breast milk which is important to me. Sterilising bottles is more difficult for me so that is Louie’s job. We also have the Tommee Tippee Perfext Prep Machine which produces water at the exact temperature. We have set this up upstairs on the chest of drawers on the landing so it is the right height for me to reach. It is much easier than me having to lift a kettle in my wheelchair.
Being re-admitted to hospital was stressful. The doctors did lots of tests. They kept saying weight loss was normal but that such a significant weight loss was worrying. They checked Arthur’s kidney function to check if perhaps his small kidney was a contributing factor to his weight loss. Thankfully these tests were normal. We have also had his kidneys scanned and the scan did not identify any need for treatment as his kidneys are draining well. He will have a follow up scan when he is 3 months old. Due to the extreme weight loss, the doctors treating Arthur in hospital did a urine test for neuroblastoma (the cancer I had when I was a baby). These results took 5 days to come back but were within normal range thank goodness.
My cancer specialist came to St Michael’s Hospital when I was re-admitted. She wanted to personally congratulate me which was lovely. She explained that neuroblastoma rarely runs in families and when it does, it affects most family members. She said the fact that only I suffered from the condition, means it is unlikely to be genetic. She therefore did not think any tests were necessary but as it was just a urine test that the baby doctors were recommending, she and I agreed to go ahead with the test given that it is non-invasive. As the hormone levels in Arthur’s urine were normal, no further tests are needed, especially as he has now re-gained weight.
It was frustrating being in the hospital as nothing was adapted to enable me to care for Arthur completely independently. The cot was too high so I had to constantly raise my hospital bed to about 6ft in the air so I could be above the cot and reach in and pick him up. The baby bath was also too high so we had to wash him using a top and take bowl. I was using a breast pump but thr steriliser bags had to go in the microwave which was again too high for me to reach. I therefore had to rely on others more than I would like.
We have now bend home for 15 days, the stairlift is fixed and I can look after Arthur on my own. He goes in the sling and I carefully transfer us from my chair to the lift. He doesn’t even seem to mind this unusual movement, he’s probably used to it from being in my womb. The drop side cribs upstairs and downstairs work well and I have a supply of nappies and wipes in a caddy by the bed which means I can change Arthur at night without having to transfer into my chair and wheel to the nursery. The changing table my Dad made in the nursery is also the perfect height I am loving getting Arthur dressed in all of his outfits each day, even if they are all too big.
Bathing Arthur isn’t the easiest. I struggle to reach into the bath to lift him in and out. We have a little seat that holds him securely in place. I can lean down to wash him but I make sure Louie is nearby in case. Louie lifts him out of the bath onto my lap so I can dry him and wheel us into his nursery.
Arthur’s play gym arrived yesterday. It has hanging toys but also lights, sounds, songs, and animals that dance when Arthur moves. It’s hard for me to lift him up and down from the floor but I can climb in and out of my chair onto and off the floor so at least I can play with him. He loves it!
Probably the biggest success is the sling. We have been on lots of day trips already and Arthur loves sitting in the sling on my lap. So many people stop us and comment on his hair or the fact he is so tiny. I suppose you don’t see many people in wheelchairs with a baby in a sling. Arthur doesn’t seem phased by these sometimes bumpy rides but again this is probably because he would have felt the same motion when he was inside me.
I know I’m his Mum and am therefore biased but he really is such a good baby and we are so lucky. He only wakes 2-3 times each night and even then he doesn’t cry. He just grunts until he gets fed. We take it in turns to do the feeds. He knows I am more of a soft touch than Louie and sometimes winges when I put him in the crib because he knows I will give in and pick him up. We are still establishing a routine and I know we will get there.
We have loved having lots of visitors and are so grateful for all of the support we have received from friends and family.
We will be in touch soon.
Xxx
Sorry it has been a while since my last blog. It has been a busy 25 days since our little Arthur was born.
As some of you may know from my Facebook posts, we stayed in hospital for 4 nights after Arthur’s birth so that he could be monitored to ensure he suffered from no withdrawal symptoms relating to the pain killers and muscle relaxants I took during pregnancy. The scoring system used by the NHS is out of 10. The doctors check for 10 symptoms including sweating, sneezing, irritability, and drowsiness. These checks are made 3 times each day for 5 days. If the baby scores 6 or higher then treatment is given. I am pleased to say that Arthur scores 0. Keeping my dosage of medication to a minimum during the pregnancy paid off as did the horse riding.
Whilst we were in hospital, Arthur had a brain scan to check on his ventricle size due to concerns raised during pregnancy scans. The scan following his birth showed one ventricle is ‘prominant’ However, there were no signs of blockages or damage to brain tissue. We have to measure Arthur’s head weekly for the next 12 weeks. Provided it does not grow more than a centimetre each week, there will be no further treatment. Doctors do not anticipate that Arthur will have any problems in the future.
The day we were discharged was a bit stressful as when I got home, I went to get on the stairlift to go upstairs and found it was not working. This is not ideal as we do not have a downstairs toilet. I don’t like Louie carrying me up and down the stairs in case we both fall. I therefore climbed up the stairs on my bottom with Louie in front of me. I then pulled myself from the floor to my wheelchair. Not great when you have given birth 4 days before but at least I didn’t need a C section. The engineers came at 8.30pm but after 2.5 hours of work, they still could not fix the issue. I therefore faced the prospect of spending the next few days trapped upstairs.
The midwife came to do a routine check the following day and found that Arthur had lost 15 percent of his body weight. We were therefore admitted back into hospital for 5 days in order to establish a feeding routine. I was breastfeeding but because Arthur had jaundice, he was too tired to suck for long periods so he now has a combination of breast milk from the breast and from a pump but with a formula top up. He is now doing well and is weighing heavier than his birth weight and his jaundice has resolved. I wish I could breast feed exclusively but he struggles to latch for long periods because he knows the bottle is the easy option. It’s ok because at least he is still getting breast milk which is important to me. Sterilising bottles is more difficult for me so that is Louie’s job. We also have the Tommee Tippee Perfext Prep Machine which produces water at the exact temperature. We have set this up upstairs on the chest of drawers on the landing so it is the right height for me to reach. It is much easier than me having to lift a kettle in my wheelchair.
Being re-admitted to hospital was stressful. The doctors did lots of tests. They kept saying weight loss was normal but that such a significant weight loss was worrying. They checked Arthur’s kidney function to check if perhaps his small kidney was a contributing factor to his weight loss. Thankfully these tests were normal. We have also had his kidneys scanned and the scan did not identify any need for treatment as his kidneys are draining well. He will have a follow up scan when he is 3 months old. Due to the extreme weight loss, the doctors treating Arthur in hospital did a urine test for neuroblastoma (the cancer I had when I was a baby). These results took 5 days to come back but were within normal range thank goodness.
My cancer specialist came to St Michael’s Hospital when I was re-admitted. She wanted to personally congratulate me which was lovely. She explained that neuroblastoma rarely runs in families and when it does, it affects most family members. She said the fact that only I suffered from the condition, means it is unlikely to be genetic. She therefore did not think any tests were necessary but as it was just a urine test that the baby doctors were recommending, she and I agreed to go ahead with the test given that it is non-invasive. As the hormone levels in Arthur’s urine were normal, no further tests are needed, especially as he has now re-gained weight.
It was frustrating being in the hospital as nothing was adapted to enable me to care for Arthur completely independently. The cot was too high so I had to constantly raise my hospital bed to about 6ft in the air so I could be above the cot and reach in and pick him up. The baby bath was also too high so we had to wash him using a top and take bowl. I was using a breast pump but thr steriliser bags had to go in the microwave which was again too high for me to reach. I therefore had to rely on others more than I would like.
We have now bend home for 15 days, the stairlift is fixed and I can look after Arthur on my own. He goes in the sling and I carefully transfer us from my chair to the lift. He doesn’t even seem to mind this unusual movement, he’s probably used to it from being in my womb. The drop side cribs upstairs and downstairs work well and I have a supply of nappies and wipes in a caddy by the bed which means I can change Arthur at night without having to transfer into my chair and wheel to the nursery. The changing table my Dad made in the nursery is also the perfect height I am loving getting Arthur dressed in all of his outfits each day, even if they are all too big.
Bathing Arthur isn’t the easiest. I struggle to reach into the bath to lift him in and out. We have a little seat that holds him securely in place. I can lean down to wash him but I make sure Louie is nearby in case. Louie lifts him out of the bath onto my lap so I can dry him and wheel us into his nursery.
Arthur’s play gym arrived yesterday. It has hanging toys but also lights, sounds, songs, and animals that dance when Arthur moves. It’s hard for me to lift him up and down from the floor but I can climb in and out of my chair onto and off the floor so at least I can play with him. He loves it!
Probably the biggest success is the sling. We have been on lots of day trips already and Arthur loves sitting in the sling on my lap. So many people stop us and comment on his hair or the fact he is so tiny. I suppose you don’t see many people in wheelchairs with a baby in a sling. Arthur doesn’t seem phased by these sometimes bumpy rides but again this is probably because he would have felt the same motion when he was inside me.
I know I’m his Mum and am therefore biased but he really is such a good baby and we are so lucky. He only wakes 2-3 times each night and even then he doesn’t cry. He just grunts until he gets fed. We take it in turns to do the feeds. He knows I am more of a soft touch than Louie and sometimes winges when I put him in the crib because he knows I will give in and pick him up. We are still establishing a routine and I know we will get there.
We have loved having lots of visitors and are so grateful for all of the support we have received from friends and family.
We will be in touch soon.
Xxx
Tuesday, August 6, 2019
Hello All,
So this is probably the blog that you have all been waiting for since my very first blog written in the early stages of my pregnancy. I must admit, I did not expect to be writing this blog in August and I did not think I would be in a fit state to do so less than 48 hours after giving birth. I thought it even less likely that this blog would be written from a normal post-natal ward with our beautiful baby boy next to me in bed who was in the end born at 37 weeks plus 3 days. I had expected to be sat by an incubator in the Neonatal Intensive Care Unit with a premature baby hooked up to machines.
So as stated in my most recent blog, I was admitted to hospital last Wednesday so that my bladder could be monitored as baby was squashing my already damaged nerves. Unfortunately, the planned induction for 2nd August 2019 was delayed as the hospital was too busy. It was strange to be categorised as ‘low priority’ for a change given my complex medical history.
I was induced at 6pm on Saturday 3rd August 2919 but was told that, based on initial examinations, I would probably not have any symptoms for 24 hours. The induction was expected to take even longer than average due to me not being able to stand and mobilise which usually brings on labour. So I sat back and watched a film and within 2 hours my pelvis and back became very painful. All I wanted to do was stand to relieve this but this is obviously not an option for me. I then vomited throughout the night due to the hormones given to induce labour. The midwives said it was likely the baby moving down the birth canal and not labour itself. I remember thinking that I should have had a C section and questioning how I would cope when labour really set in because my legs were already spasming and I could not take any regular medication due to being sick.
The consultant came to see me on Sunday morning (4th August 2019) and said I had reacted very well to the initial induction so I was taken to delivery suite. We waited a while for a specialist Anaesthetist to insert an epidural. This was not something I wanted initially but given the pelvic pain I had experienced the previous night, I thought I should have the epidural fitted as I was so sure I would not get through labour and would need a C section. I had been told that given my double curvature of the spine and extensive spinal rods and screws, inserting an epidural late in labour would not be a likely option for me and I would need a general anaesthetic if my baby mended to be removed urgently via C section.
The Anaesthetist scanned my spine and inserted the epidural. Due to the extensive spinal surgery I have undergone, there was a lot of scar tissue. I could hear the needle hitting the tissue. Not a nice sound. Louie had to sit in front of me to prevent me shooting backwards during a spasm. The epidural failed completely the first time due to my metalwork. Fortunately, the second attempt Was more successful. Unfortunately however, the epidural only numbed one side of my abdomen so I felt every contraction on my right side. This is because of the abnormal nerve pathways from my back to my lower body. Following the epidural, I then developed severe neurological hip pain which again is probably due to abnormal nerve function and pathways.
My waters were broken at around 4pm and a few hours later I was started on a drip to encourage contractions.
By 11pm I had developed a slight temperature and the pain in my hip was terrible. I was worried baby was getting stuck.
The midwife was also concerned that baby’s heart tracing was a bit sluggish so a consultant was called. She was not concerned with baby but I asked for a C section due to the hip pain and my concerns about baby getting stuck. She examined me and said I was fully dilated and ready to start pushing. It is rare for first time mums to be ready to push less than 36 hours after induction begins. My contractions were painful on the right side but they were manageable for me. Unlike other pain I have experienced, I was able to breathe through them and the relief between them helped. I still think the worst pain I have felt was when 8 of my ribs were broken during spinal surgery to try and straighten them. Unlike contractions, this pain was terrible as even breathing hurt.
I agreed to put up with the pain for a further couple of hours to allow baby to move downwards. This was tricky as my hip was so uncomfortable. Additional pain relief was put through the epidural but still did not numb the right side of my tummy.
I began pushing at 01.15am on 5th August 2019 and was told it could take up to two hours. However, at 01.40am our beautiful baby boy, Arthur James Scotto Di Perta was born after a few pushes. Not being able to walk means my abdominal muscles are strong and so although the pushing was tiring, it did not take too long. He weighed a healthy 6 pounds 5 ounces.
He was placed onto my tummy and Louie cut the chord. I thought these two steps would not be possible as I was so sure he would need support due to my medication.
I was given an injection to encourage delivery of the placenta but this caused my blood pressure to increase. I felt unwell for the next few hours but did manage to feed Arthur before going back to the ward at 5.30am.
He is just perfect. He is showing no adverse effects from my medication and is feeding well.
I tried breastfeeding uptight but at the moment, doing it laying on my side is easier for me given my spinal curves.
We have both been on antibiotics as a precaution as I had a temperature. Arthur had to have a cannula fitted in NICU a few hours after he was born. I wasn’t strong enough to go with him so Mum did. It was horrible to think of him in pain and I now realise what it must have been like for my Mum and Dad when I was so very poorly in the hospital across the road 29 years ago. However, our blood results came back clear tonight so we are free of all tubes.
I am now looking after Arthur independently at night and am strong enough to lift him in and out of his cot for feeds. I can do all of his nappies and am feeling more confident with him by the day.
Louie and my Mum were an incredible support during labour and I have been so fortunate
to have been cared for by amazing staff at St Michael’s Hospital.
I still cannot believe that Arthurvis so perfect despite coming out of my body. He will have his kidneys and brain checked in the next month but so far the doctors seem happy.
Louie and I have been overwhelmed by the amount of kind wishes we have received. I set out to do this blog to raise awareness of pregnancy and disability. I hope I have done this and I promise to reply to each and every one of your lovely messages. It may just take some time. I will also keep you updated on our progress.
Lots of love to you all and thank you again. Xxx
So this is probably the blog that you have all been waiting for since my very first blog written in the early stages of my pregnancy. I must admit, I did not expect to be writing this blog in August and I did not think I would be in a fit state to do so less than 48 hours after giving birth. I thought it even less likely that this blog would be written from a normal post-natal ward with our beautiful baby boy next to me in bed who was in the end born at 37 weeks plus 3 days. I had expected to be sat by an incubator in the Neonatal Intensive Care Unit with a premature baby hooked up to machines.
So as stated in my most recent blog, I was admitted to hospital last Wednesday so that my bladder could be monitored as baby was squashing my already damaged nerves. Unfortunately, the planned induction for 2nd August 2019 was delayed as the hospital was too busy. It was strange to be categorised as ‘low priority’ for a change given my complex medical history.
I was induced at 6pm on Saturday 3rd August 2919 but was told that, based on initial examinations, I would probably not have any symptoms for 24 hours. The induction was expected to take even longer than average due to me not being able to stand and mobilise which usually brings on labour. So I sat back and watched a film and within 2 hours my pelvis and back became very painful. All I wanted to do was stand to relieve this but this is obviously not an option for me. I then vomited throughout the night due to the hormones given to induce labour. The midwives said it was likely the baby moving down the birth canal and not labour itself. I remember thinking that I should have had a C section and questioning how I would cope when labour really set in because my legs were already spasming and I could not take any regular medication due to being sick.
The consultant came to see me on Sunday morning (4th August 2019) and said I had reacted very well to the initial induction so I was taken to delivery suite. We waited a while for a specialist Anaesthetist to insert an epidural. This was not something I wanted initially but given the pelvic pain I had experienced the previous night, I thought I should have the epidural fitted as I was so sure I would not get through labour and would need a C section. I had been told that given my double curvature of the spine and extensive spinal rods and screws, inserting an epidural late in labour would not be a likely option for me and I would need a general anaesthetic if my baby mended to be removed urgently via C section.
The Anaesthetist scanned my spine and inserted the epidural. Due to the extensive spinal surgery I have undergone, there was a lot of scar tissue. I could hear the needle hitting the tissue. Not a nice sound. Louie had to sit in front of me to prevent me shooting backwards during a spasm. The epidural failed completely the first time due to my metalwork. Fortunately, the second attempt Was more successful. Unfortunately however, the epidural only numbed one side of my abdomen so I felt every contraction on my right side. This is because of the abnormal nerve pathways from my back to my lower body. Following the epidural, I then developed severe neurological hip pain which again is probably due to abnormal nerve function and pathways.
My waters were broken at around 4pm and a few hours later I was started on a drip to encourage contractions.
By 11pm I had developed a slight temperature and the pain in my hip was terrible. I was worried baby was getting stuck.
The midwife was also concerned that baby’s heart tracing was a bit sluggish so a consultant was called. She was not concerned with baby but I asked for a C section due to the hip pain and my concerns about baby getting stuck. She examined me and said I was fully dilated and ready to start pushing. It is rare for first time mums to be ready to push less than 36 hours after induction begins. My contractions were painful on the right side but they were manageable for me. Unlike other pain I have experienced, I was able to breathe through them and the relief between them helped. I still think the worst pain I have felt was when 8 of my ribs were broken during spinal surgery to try and straighten them. Unlike contractions, this pain was terrible as even breathing hurt.
I agreed to put up with the pain for a further couple of hours to allow baby to move downwards. This was tricky as my hip was so uncomfortable. Additional pain relief was put through the epidural but still did not numb the right side of my tummy.
I began pushing at 01.15am on 5th August 2019 and was told it could take up to two hours. However, at 01.40am our beautiful baby boy, Arthur James Scotto Di Perta was born after a few pushes. Not being able to walk means my abdominal muscles are strong and so although the pushing was tiring, it did not take too long. He weighed a healthy 6 pounds 5 ounces.
He was placed onto my tummy and Louie cut the chord. I thought these two steps would not be possible as I was so sure he would need support due to my medication.
I was given an injection to encourage delivery of the placenta but this caused my blood pressure to increase. I felt unwell for the next few hours but did manage to feed Arthur before going back to the ward at 5.30am.
He is just perfect. He is showing no adverse effects from my medication and is feeding well.
I tried breastfeeding uptight but at the moment, doing it laying on my side is easier for me given my spinal curves.
We have both been on antibiotics as a precaution as I had a temperature. Arthur had to have a cannula fitted in NICU a few hours after he was born. I wasn’t strong enough to go with him so Mum did. It was horrible to think of him in pain and I now realise what it must have been like for my Mum and Dad when I was so very poorly in the hospital across the road 29 years ago. However, our blood results came back clear tonight so we are free of all tubes.
I am now looking after Arthur independently at night and am strong enough to lift him in and out of his cot for feeds. I can do all of his nappies and am feeling more confident with him by the day.
Louie and my Mum were an incredible support during labour and I have been so fortunate
to have been cared for by amazing staff at St Michael’s Hospital.
I still cannot believe that Arthurvis so perfect despite coming out of my body. He will have his kidneys and brain checked in the next month but so far the doctors seem happy.
Louie and I have been overwhelmed by the amount of kind wishes we have received. I set out to do this blog to raise awareness of pregnancy and disability. I hope I have done this and I promise to reply to each and every one of your lovely messages. It may just take some time. I will also keep you updated on our progress.
Lots of love to you all and thank you again. Xxx
Wednesday, July 31, 2019
Evening Everyone,
So initially I wanted to keep the induction date a secret but things have moved on a bit since then and the whole point of doing this blog was to help others so I want to make sure I share all important developments so that the complete picture is shared and so people become more aware of pregnancy and disability.
We were due to come in this Friday 2nd August 2019 for induction as this is when I will be 37 weeks and full term. I never thought I would reach this stage. I could remain pregnant for longer but as baby is big, we chose induction to increase my chances of avoiding a C section.
However, I have been having issues with my bladder as the baby’s head is so low that he is preventing urine from passing. This can happen in pregnancy but is more common in women with paralysis as the nerve pathways are compromised anyway so any pressure on the nerves from baby means the nerves stop working altogether.
I saw the midwife on Monday and she referred us to hospital where we spent the day. I had to be catheterised and the doctors wanted to admit me to ensure my bladder could be emptied regularly. I wasn’t ready to stay in hospital for 4 days and I just didn’t feel it was necessary. The doctors know that my job role and years in hospital mean that I am aware of the risks and benefits of hospital admission. They therefore agreed to let me home on the understanding I would return if I felt my bladder was getting too full and not emptying properly.
I managed yesterday but today I started to feel uncomfortable again so I have been admitted to a ward. My bladder has been drained and I am currently in bed listening to baby’s heart on a monitor. They said he seems happy and is very active.
I had hoped to avoid hospital until induction but I didn’t want to take any risks so came in tonight. There are slight traces of infection in my urine but these are mild. The doctors will visit in the morning and make a decision about whether to induce tomorrow or Friday. The catheters carry risks of infection so it may be worth inducing a day early to minimise this risk. However, it depends on beds on the induction suite.
I haven’t been in hospital since my last back surgery in 2005. Being in a hospital bed with all the associated noises brings back memories for me that aren’t the best but I think these experiences have made me stronger. A few people have asked if I am nervous about the delivery but honestly I haven’t had time to think much. With my body nothing really goes to plan when it comes to hospital treatment so I am going to go with the flow.
I will keep you all updated but it may not be for a few days.
Take care all xxx
So initially I wanted to keep the induction date a secret but things have moved on a bit since then and the whole point of doing this blog was to help others so I want to make sure I share all important developments so that the complete picture is shared and so people become more aware of pregnancy and disability.
We were due to come in this Friday 2nd August 2019 for induction as this is when I will be 37 weeks and full term. I never thought I would reach this stage. I could remain pregnant for longer but as baby is big, we chose induction to increase my chances of avoiding a C section.
However, I have been having issues with my bladder as the baby’s head is so low that he is preventing urine from passing. This can happen in pregnancy but is more common in women with paralysis as the nerve pathways are compromised anyway so any pressure on the nerves from baby means the nerves stop working altogether.
I saw the midwife on Monday and she referred us to hospital where we spent the day. I had to be catheterised and the doctors wanted to admit me to ensure my bladder could be emptied regularly. I wasn’t ready to stay in hospital for 4 days and I just didn’t feel it was necessary. The doctors know that my job role and years in hospital mean that I am aware of the risks and benefits of hospital admission. They therefore agreed to let me home on the understanding I would return if I felt my bladder was getting too full and not emptying properly.
I managed yesterday but today I started to feel uncomfortable again so I have been admitted to a ward. My bladder has been drained and I am currently in bed listening to baby’s heart on a monitor. They said he seems happy and is very active.
I had hoped to avoid hospital until induction but I didn’t want to take any risks so came in tonight. There are slight traces of infection in my urine but these are mild. The doctors will visit in the morning and make a decision about whether to induce tomorrow or Friday. The catheters carry risks of infection so it may be worth inducing a day early to minimise this risk. However, it depends on beds on the induction suite.
I haven’t been in hospital since my last back surgery in 2005. Being in a hospital bed with all the associated noises brings back memories for me that aren’t the best but I think these experiences have made me stronger. A few people have asked if I am nervous about the delivery but honestly I haven’t had time to think much. With my body nothing really goes to plan when it comes to hospital treatment so I am going to go with the flow.
I will keep you all updated but it may not be for a few days.
Take care all xxx
Wednesday, July 24, 2019
Morning All
So this may well be the last blog before our long awaited baby is born.
I have just had my scan and been reviewed by the Fetal Medicine Consultant at St Michael’s Hospital. Baby is doing well. Still a big boy with an estimated birth weight in the region of 7.5 pounds despite the fact he will be born around 3 weeks early. I discussed the fact he is big again with the consultant and my concerns about his head getting stuck in my pelvis particularly given that my spine is not straight so there is a chance my pelvis is not straight. He was not concerned as I will he monitored closely and should any problems arise in labour, a c section is always an option. After all, I do get my legs round a chunky pony each week with no trouble! The problem is that working in clinical negligence law, I only ever hear the nightmare stories.
The ventricles measured 10mm again today which makes them borderline abnormal but the consultant is reassured by all other test results. It is difficult to measure the ventricles now as baby has his head so low. We have been warned there is a strong possibility he will make his own way out before next week.
With regards to the kidneys, the left side which was the one that caused concern was visualised on today’s scan. It appeared normal but small. The right kidney could not be seen as his hand was over it. It seems he has his Mummy’s long fingers.
He will have to be monitored after birth due to him having been exposed to a muscle relaxant and the odd codeine. I have tried to keep these as few and far between as possible but I have to balance the risks of not taking the medications. My legs can become locked in spasms which spread throughout my body. If this happens during a transfer from the bed to the toilet, I could fall which is more risky than a low dose Diazopan.
The hardest thing is still the getting up to the toilet in the night. Pulling myself out of bed in this heat on my arms is getting so tough. Being able to walk would be so much easier. By the time I get back to bed, I am then wide awake in the boiling heat.
This is my last week at work. I am in the office tomorrow for the last time. Not sure how I feel really. I will miss my colleagues and it’s strange to think they will all carry on without me. Then again, I am moving on to a new exciting chapter which I know will fly by and before I know it I will be back at work. I’m surprised I have managed to keep working until 36 weeks which is the same as most women without a disability. I think it is being active that has helped me get this far.
I have a final midwife appointment on Monday to check my blood pressure and urine. This will endure I am fit for induction. It’s then just the count down until our next trip to St Michael’s Hospital which will be the biggest days of our lives. We have enough snacks to supply a small shop and I plan to make the most of Deliveroo.
We will be sure to keep you updated and I will blog as soon as I can.
Love xxx
So this may well be the last blog before our long awaited baby is born.
I have just had my scan and been reviewed by the Fetal Medicine Consultant at St Michael’s Hospital. Baby is doing well. Still a big boy with an estimated birth weight in the region of 7.5 pounds despite the fact he will be born around 3 weeks early. I discussed the fact he is big again with the consultant and my concerns about his head getting stuck in my pelvis particularly given that my spine is not straight so there is a chance my pelvis is not straight. He was not concerned as I will he monitored closely and should any problems arise in labour, a c section is always an option. After all, I do get my legs round a chunky pony each week with no trouble! The problem is that working in clinical negligence law, I only ever hear the nightmare stories.
The ventricles measured 10mm again today which makes them borderline abnormal but the consultant is reassured by all other test results. It is difficult to measure the ventricles now as baby has his head so low. We have been warned there is a strong possibility he will make his own way out before next week.
With regards to the kidneys, the left side which was the one that caused concern was visualised on today’s scan. It appeared normal but small. The right kidney could not be seen as his hand was over it. It seems he has his Mummy’s long fingers.
He will have to be monitored after birth due to him having been exposed to a muscle relaxant and the odd codeine. I have tried to keep these as few and far between as possible but I have to balance the risks of not taking the medications. My legs can become locked in spasms which spread throughout my body. If this happens during a transfer from the bed to the toilet, I could fall which is more risky than a low dose Diazopan.
The hardest thing is still the getting up to the toilet in the night. Pulling myself out of bed in this heat on my arms is getting so tough. Being able to walk would be so much easier. By the time I get back to bed, I am then wide awake in the boiling heat.
This is my last week at work. I am in the office tomorrow for the last time. Not sure how I feel really. I will miss my colleagues and it’s strange to think they will all carry on without me. Then again, I am moving on to a new exciting chapter which I know will fly by and before I know it I will be back at work. I’m surprised I have managed to keep working until 36 weeks which is the same as most women without a disability. I think it is being active that has helped me get this far.
I have a final midwife appointment on Monday to check my blood pressure and urine. This will endure I am fit for induction. It’s then just the count down until our next trip to St Michael’s Hospital which will be the biggest days of our lives. We have enough snacks to supply a small shop and I plan to make the most of Deliveroo.
We will be sure to keep you updated and I will blog as soon as I can.
Love xxx
Friday, July 12, 2019
Hey everyone!
So I promised to update you all today as today is a big milestone in the pregnancy as I have reached 34 weeks gestation. Most babies born at this stage do not need respiratory support and have the same survival rates as full term babies. The doctors actually had me provisionally on the list for induction today as they were so sure the baby would have stopped growing due to reduced space in my abdominal cavity. HE HAS NOT STOPPED GROWING! This means the pregnancy can continue for at least another 3 weeks so that he will be classed as full term when I am induced. Although 40 weeks is the normal length of pregnancy, the NHS class 37 weeks as term nowadays. As with all inductions, it may take a few days but it is safe to say that baby Scotto will arrive in the next 4 weeks or so.
So with regards to the abnormality with the ventricle size in his brain, we are so relieved that not only was Monday’s MRI normal, but today on the ultrasound the measurements were below the 10mm threshold above which doctors become concerned. This does not mean the previous measurements were wrong and those taken during the MRI and the scan today are correct but it is further reassurance that any abnormality that is present is minor.
However, during the scan today they did note that one of the baby’s kidneys was larger than the other. They initially said one was too large. However, the doctor performing the scan said that the baby does have normal kidney function and the enlargement in the one kidney could be due to a full bladder.
We were then told we would need to come back for more measurements next week with the Fetal Medicine Unit (baby doctors). However, a patient failed to attend their appointment today so they squeezed me in with a consultant from the Fetal Medicine Unit this morning who did another thorough scan. She agreed that the ventricles in the brain were within normal range and she said that it is not that one kidney is enlarged but that one is a bit small. It is impossible to say if the smaller kidney is working but it has good arterial blood flow so it looks like it is functioning normally. I myself have one kidney smaller than the other and there is about a 2cm difference. They are not concerned but will scan baby when he is a few days old. Even if the kidney isn’t working at all, no treatment would be given because we can live happily with one kidney.
We are so fortunate to have the scans and today’s care was amazing. However, with so many different measurements and different people scanning, anomalies that are actually nothing to worry about do get detected.
Baby is still big, now weighing 6 pounds, so I questioned whether a C section would be best with my small pelvis. The doctors are confident that it is safe for me to try a vaginal birth first so that is what i will do. We do have a confirmed date of induction and I will blog before this date but we would like to keep the exact date to ourselves and close family. It is likely to be a long process. Louie is looking forward to sleeping in a reclining chair for at least 3 nights!
The Health Visitor has just visited this afternoon and is happy that we are as organised as we can be and that the house and measures we have implemented make it safe for me to care for the baby independently. She spoke about isolation after birth which may be more of an issue for me because I can’t get in a car spontaneously and go places. She has given me contacted details for lots of support groups that Louie and I can attend soon after birth. She also agrees that breastfeeding would be the best option for me to avoid the messing around with bottles when I am in my own.
So now it’s tome for a nap, it has been a worrying few weeks but we can count down the days until we meet our baby. I hardly sleep at night now due to needing the toilet approximately each hour. Getting up into a wheelchair, transferring to a toilet and then back again isn’t easy on your arms with a big bump. I use my inflatable bath cushion to lift me out of the bath but even with this helpful equipment, Louie does occasionally have to rescue me. It all depends on baby’s position. The one hour each way commute on the train to work is tough in this heat and my legs are quite spasmy due to not riding or being able to take medication. Oh well, just 2 more weeks of work and then some annual leave before I go on maternity leave. All seems real now!
If anyone would like to guess the name, delivery date, and weight, please comment below.
I must just say a quick happy birthday to my Mummy. Everyone says their Mum is the best but mine really is and she has done so much for us over the last 9 months. She is already the best Grandma to my niece Grace and I can’t waitvfor her to meet our little one. I know they will have the best bond! She is coming up with Dad this weekend to celebrate her birthday with us and to finish the nursery. Excited!
Lots of love. Xxx
So I promised to update you all today as today is a big milestone in the pregnancy as I have reached 34 weeks gestation. Most babies born at this stage do not need respiratory support and have the same survival rates as full term babies. The doctors actually had me provisionally on the list for induction today as they were so sure the baby would have stopped growing due to reduced space in my abdominal cavity. HE HAS NOT STOPPED GROWING! This means the pregnancy can continue for at least another 3 weeks so that he will be classed as full term when I am induced. Although 40 weeks is the normal length of pregnancy, the NHS class 37 weeks as term nowadays. As with all inductions, it may take a few days but it is safe to say that baby Scotto will arrive in the next 4 weeks or so.
So with regards to the abnormality with the ventricle size in his brain, we are so relieved that not only was Monday’s MRI normal, but today on the ultrasound the measurements were below the 10mm threshold above which doctors become concerned. This does not mean the previous measurements were wrong and those taken during the MRI and the scan today are correct but it is further reassurance that any abnormality that is present is minor.
However, during the scan today they did note that one of the baby’s kidneys was larger than the other. They initially said one was too large. However, the doctor performing the scan said that the baby does have normal kidney function and the enlargement in the one kidney could be due to a full bladder.
We were then told we would need to come back for more measurements next week with the Fetal Medicine Unit (baby doctors). However, a patient failed to attend their appointment today so they squeezed me in with a consultant from the Fetal Medicine Unit this morning who did another thorough scan. She agreed that the ventricles in the brain were within normal range and she said that it is not that one kidney is enlarged but that one is a bit small. It is impossible to say if the smaller kidney is working but it has good arterial blood flow so it looks like it is functioning normally. I myself have one kidney smaller than the other and there is about a 2cm difference. They are not concerned but will scan baby when he is a few days old. Even if the kidney isn’t working at all, no treatment would be given because we can live happily with one kidney.
We are so fortunate to have the scans and today’s care was amazing. However, with so many different measurements and different people scanning, anomalies that are actually nothing to worry about do get detected.
Baby is still big, now weighing 6 pounds, so I questioned whether a C section would be best with my small pelvis. The doctors are confident that it is safe for me to try a vaginal birth first so that is what i will do. We do have a confirmed date of induction and I will blog before this date but we would like to keep the exact date to ourselves and close family. It is likely to be a long process. Louie is looking forward to sleeping in a reclining chair for at least 3 nights!
The Health Visitor has just visited this afternoon and is happy that we are as organised as we can be and that the house and measures we have implemented make it safe for me to care for the baby independently. She spoke about isolation after birth which may be more of an issue for me because I can’t get in a car spontaneously and go places. She has given me contacted details for lots of support groups that Louie and I can attend soon after birth. She also agrees that breastfeeding would be the best option for me to avoid the messing around with bottles when I am in my own.
So now it’s tome for a nap, it has been a worrying few weeks but we can count down the days until we meet our baby. I hardly sleep at night now due to needing the toilet approximately each hour. Getting up into a wheelchair, transferring to a toilet and then back again isn’t easy on your arms with a big bump. I use my inflatable bath cushion to lift me out of the bath but even with this helpful equipment, Louie does occasionally have to rescue me. It all depends on baby’s position. The one hour each way commute on the train to work is tough in this heat and my legs are quite spasmy due to not riding or being able to take medication. Oh well, just 2 more weeks of work and then some annual leave before I go on maternity leave. All seems real now!
If anyone would like to guess the name, delivery date, and weight, please comment below.
I must just say a quick happy birthday to my Mummy. Everyone says their Mum is the best but mine really is and she has done so much for us over the last 9 months. She is already the best Grandma to my niece Grace and I can’t waitvfor her to meet our little one. I know they will have the best bond! She is coming up with Dad this weekend to celebrate her birthday with us and to finish the nursery. Excited!
Lots of love. Xxx
Monday, July 1, 2019
Morning All,
It’s a bit unusual for me to have the time to blog on a Monday morning but today I am on annual leave and am spending my morning at a midwife appointment undergoing a glucose test. This is because on our last scan on Thursday 27th June 2019 it became apparent that our baby is very large. I am now 32 weeks plus 3 days pregnant and a baby at this stage is usually between 3 and 3.5 pounds. Our little boy is estimated to be around 4 pounds 15 ounces. You do have to allow about 3 ounces each way for scanner error. Even with this 3 ounce either way allowance, he is still big with a fat tummy. This means the doctors have to rule out gestational diabetes. I don’t think I have diabetes as I don’t have any of the swelling or urinary symptoms but it’s best to be sure. My mum had the same situation when she was pregnant with me and it turned out I was just big. I think the doctors were expecting a small baby with my short body but everyone in mine and Louie’s family are quite tall. I had to starve myself from last night then I came and had my first lot of bloods taken. I have just had to drink a vile glucose drink and am now sitting for 2 hours before having repeat bloods taken. I should get the results in 3 days.
There was another issue identified on the scan. Although everything looked fine and he was moving and growing well and the amniotic fluid levels were normal, a ventricles in his brain appeared slightly dilated. Each of the 4 ventricles should measure between 4mm and 10mm. Each measurement of one of the anterior ventricles was 10mm but when a final check was performed the measurement was 11.8mm. We have therefore been referred to Fetal Medicine for another scan this Wednesday and this time it will be performed by a Consultant Neonatologist. Dilated ventricles can be caused by a variety of conditions including Downs Syndrome and Hydrocephalus. However, we have been reassured that these conditions are unlikely as our genetic blood tests performed early in pregnancy cams back with low risk of Downs Syndrome and baby’s head circumference is normal which suggests it’s not Hydrocephalus. I have done a lot of research this weekend and a measurement between 10mm and 12mm appears to be classed as mild and 98 percent of babies with this measurement are born healthy. It’s just a waiting game. The lady who scanned me said she is sure it is nothing and is referring me because of my history of spinal issues. She also noted on her report that she struggled to get a good view due to his head now being well down in my pelvis. Even if the Consultant does measure the ventricle at higher than 10mm but less than 12mm and if all else is well, the pregnancy will continue as normal and we will know more when he is born.
We have been told that labour will be induced around 37 weeks as this is what the NHS class as full term. This would be the best outcome for baby. The countdown really has begun.
I had my second baby shower on Saturday which was lovely. Friends travelled from all over the country and I was so touched. It means so much to have the support of those around me. We were totally spoilt with presents. I am looking forward to organising them in the nursery.
When my second blood test is done I am off up to the stables. It will be my last visit before I become a Mummy. I then plan to rest for the remainder of the day as I am feeling a bit drained. I have a urine infection and the heat is taking it out of me a little bit. Urine infections are common in pregnancy but I am at higher risk due to not being able to stand up. Also, now that the baby’s head is so low down, emptying my bladder fully is harder. I will start antibiotics today.
I am still working full time although I do 2 days a week at home which helps. I hope to work for at least another 3 weeks. I have given all my cases to colleagues now just in case I need to leave work suddenly.
My Mum came up and washed and ironed all the baby clothes. My hospital bag is packed although if baby carries on growing, some of the clothes are likely to be too small. Louie has also packed a bag as he is likely to have to stay with me in hospital to help me move around, especially if I do end up having a C section. I can hear babies crying having their post-natal check ups. That might be our baby any day now. Who would have thought he was expected to arrive 4 weeks ago.
I will blog again soon.
Lots of love xxx
It’s a bit unusual for me to have the time to blog on a Monday morning but today I am on annual leave and am spending my morning at a midwife appointment undergoing a glucose test. This is because on our last scan on Thursday 27th June 2019 it became apparent that our baby is very large. I am now 32 weeks plus 3 days pregnant and a baby at this stage is usually between 3 and 3.5 pounds. Our little boy is estimated to be around 4 pounds 15 ounces. You do have to allow about 3 ounces each way for scanner error. Even with this 3 ounce either way allowance, he is still big with a fat tummy. This means the doctors have to rule out gestational diabetes. I don’t think I have diabetes as I don’t have any of the swelling or urinary symptoms but it’s best to be sure. My mum had the same situation when she was pregnant with me and it turned out I was just big. I think the doctors were expecting a small baby with my short body but everyone in mine and Louie’s family are quite tall. I had to starve myself from last night then I came and had my first lot of bloods taken. I have just had to drink a vile glucose drink and am now sitting for 2 hours before having repeat bloods taken. I should get the results in 3 days.
There was another issue identified on the scan. Although everything looked fine and he was moving and growing well and the amniotic fluid levels were normal, a ventricles in his brain appeared slightly dilated. Each of the 4 ventricles should measure between 4mm and 10mm. Each measurement of one of the anterior ventricles was 10mm but when a final check was performed the measurement was 11.8mm. We have therefore been referred to Fetal Medicine for another scan this Wednesday and this time it will be performed by a Consultant Neonatologist. Dilated ventricles can be caused by a variety of conditions including Downs Syndrome and Hydrocephalus. However, we have been reassured that these conditions are unlikely as our genetic blood tests performed early in pregnancy cams back with low risk of Downs Syndrome and baby’s head circumference is normal which suggests it’s not Hydrocephalus. I have done a lot of research this weekend and a measurement between 10mm and 12mm appears to be classed as mild and 98 percent of babies with this measurement are born healthy. It’s just a waiting game. The lady who scanned me said she is sure it is nothing and is referring me because of my history of spinal issues. She also noted on her report that she struggled to get a good view due to his head now being well down in my pelvis. Even if the Consultant does measure the ventricle at higher than 10mm but less than 12mm and if all else is well, the pregnancy will continue as normal and we will know more when he is born.
We have been told that labour will be induced around 37 weeks as this is what the NHS class as full term. This would be the best outcome for baby. The countdown really has begun.
I had my second baby shower on Saturday which was lovely. Friends travelled from all over the country and I was so touched. It means so much to have the support of those around me. We were totally spoilt with presents. I am looking forward to organising them in the nursery.
When my second blood test is done I am off up to the stables. It will be my last visit before I become a Mummy. I then plan to rest for the remainder of the day as I am feeling a bit drained. I have a urine infection and the heat is taking it out of me a little bit. Urine infections are common in pregnancy but I am at higher risk due to not being able to stand up. Also, now that the baby’s head is so low down, emptying my bladder fully is harder. I will start antibiotics today.
I am still working full time although I do 2 days a week at home which helps. I hope to work for at least another 3 weeks. I have given all my cases to colleagues now just in case I need to leave work suddenly.
My Mum came up and washed and ironed all the baby clothes. My hospital bag is packed although if baby carries on growing, some of the clothes are likely to be too small. Louie has also packed a bag as he is likely to have to stay with me in hospital to help me move around, especially if I do end up having a C section. I can hear babies crying having their post-natal check ups. That might be our baby any day now. Who would have thought he was expected to arrive 4 weeks ago.
I will blog again soon.
Lots of love xxx
Friday, June 7, 2019
Hello again everyone.
It’s been a few weeks since my last blog and quite a lot has happened. I feel like my life is just one big hospital appointment at the moment. At least I am being closely monitored.
So I have had two scans since I last blogged. The first was a growth scan which showed that baby is not squashed and is growing well. We then had another consultant appointment and she is very pleased with how my pregnancy is going. I mentioned some strange sensations in my lower legs (more feeling than normal) and a change in the colour of the skin. This she says is the result of increased blood flow. Normally, my circulation is reduced due to the nerve damage and lack of use of my legs. However, in pregnancy, extra blood is made by the body and this combined with the blood thinning injections and Aspirin is meaning my legs are getting more blood. Not a bad thing.
My Mum and Dad took me for a 4D scan last week. It was lovely to see him looking like a real human. He seemed happy enough, kicking away. It doesn’t look like he has any of my features, more like his Daddy I think. No hair either. Oh well, there is still time.
I finished riding last week which was emotional for me. My spasms are gradually increasing, especially at night, but I am trying to hold off re-starting the muscle relaxant. I will have to see how it goes. I am starting my grooming sessions with Choco on Monday so at least I still get to see my favourite pony and be in the fresh air.
I had my 29 week heart scan today. This, as I have explained previously, is performed on all women who are pregnant and have received Epirubicin (a type of chemotherapy). The scan is performed routinely every 5 years and then twice in pregnancy. At this stage of pregnancy, the baby is doing the most growing and blood volume is at its highest. The chemotherapy can weaken the heart muscle and mean that the heart is under strain during pregnancy. I am happy to say that all was normal, in fact, I was told that my heart seemed to be unaffected by the additional strain. Mind you, it has been through worse.
Although we weren’t planning to have a baby at this time in our lives, i think it is a blessing that we did as I really have felt so healthy. The cardiac radiologist says this is largely down to my age. Had I been 6 or more years older, she thinks things may have been tougher for me.
My new Carer started toddy and she is lovely. I feel confident we will get on well.
From next week I will be working from home 3 days a week. I am still managing the commute and climbing in and out of cars etc but my work are very understanding and there’s no point tiring myself out. I have started handing over my cases. Some of them I have had since I started at my firm over 4 years ago. It is hard to say goodbye but they have all been very happy for me. I think working in clinical negligence makes me more aware of health complications in pregnancy and I have learnt a lot over the years about child birth. Hopefully the knowledge will come in handy.
I desperately need a new wheelchair. Mine is falling apart. The NHS only provide aluminium ones and they are heavy. It makes it hard for my carers to fit it in the car. I considered private options as I fundraiser for my current chair and I love it as it is titanium and super light. However, since I got this chair, there have been funding cuts and the NHS only contribute £1000 and a replica of my current chair is about £3000. I therefore had an appointment this week with NHS the wheelchair clinic and I am considering all the ways to make the NHS chair as small and light as possible. It won’t be like I have now but I need it to be reliable so I need to just go for it and make the best of what they give me.
Louie has been building the cot and crib. DIY isn’t his thing and I can’t help. He did it though so we are pretty much sorted.
I feel a bit sad this evening as my Mum, Dad, siblings, their partners, and little Grace are all off to France without us. I just can’t risk going and going into labour abroad, not with my history. If it was a normal pregnancy, I could have gone but given that the consultant said he may come from May onwards, it’s just too risky. I don’t think I could do the journey anyway. Sitting for long periods is uncomfortable. Being unable to stand up means I have to slump in my chair to make more kicking room. There will be plenty more holiday. I just hope babstays where he is, he can’t come out without his Grandma and Grandad ready and waiting to meet him.
I went home last weekend to see my Grandad for his birthday. I realised that we will have to be very organised when baby is walking. We went to the Hoe and it was me, my brother, and Grace. She was so good and helped push me but as soon as she saw the bouncy castle she was off. It’s difficult to push fast after her, especially when you are carrying a potty and colouring! We will use reins I think and have to invest in some storage for the wheelchair.
Anyway, I hope you all have a lovely weekend and I will blog again on 27th June after our next scan.
Lots of love xxx
It’s been a few weeks since my last blog and quite a lot has happened. I feel like my life is just one big hospital appointment at the moment. At least I am being closely monitored.
So I have had two scans since I last blogged. The first was a growth scan which showed that baby is not squashed and is growing well. We then had another consultant appointment and she is very pleased with how my pregnancy is going. I mentioned some strange sensations in my lower legs (more feeling than normal) and a change in the colour of the skin. This she says is the result of increased blood flow. Normally, my circulation is reduced due to the nerve damage and lack of use of my legs. However, in pregnancy, extra blood is made by the body and this combined with the blood thinning injections and Aspirin is meaning my legs are getting more blood. Not a bad thing.
My Mum and Dad took me for a 4D scan last week. It was lovely to see him looking like a real human. He seemed happy enough, kicking away. It doesn’t look like he has any of my features, more like his Daddy I think. No hair either. Oh well, there is still time.
I finished riding last week which was emotional for me. My spasms are gradually increasing, especially at night, but I am trying to hold off re-starting the muscle relaxant. I will have to see how it goes. I am starting my grooming sessions with Choco on Monday so at least I still get to see my favourite pony and be in the fresh air.
I had my 29 week heart scan today. This, as I have explained previously, is performed on all women who are pregnant and have received Epirubicin (a type of chemotherapy). The scan is performed routinely every 5 years and then twice in pregnancy. At this stage of pregnancy, the baby is doing the most growing and blood volume is at its highest. The chemotherapy can weaken the heart muscle and mean that the heart is under strain during pregnancy. I am happy to say that all was normal, in fact, I was told that my heart seemed to be unaffected by the additional strain. Mind you, it has been through worse.
Although we weren’t planning to have a baby at this time in our lives, i think it is a blessing that we did as I really have felt so healthy. The cardiac radiologist says this is largely down to my age. Had I been 6 or more years older, she thinks things may have been tougher for me.
My new Carer started toddy and she is lovely. I feel confident we will get on well.
From next week I will be working from home 3 days a week. I am still managing the commute and climbing in and out of cars etc but my work are very understanding and there’s no point tiring myself out. I have started handing over my cases. Some of them I have had since I started at my firm over 4 years ago. It is hard to say goodbye but they have all been very happy for me. I think working in clinical negligence makes me more aware of health complications in pregnancy and I have learnt a lot over the years about child birth. Hopefully the knowledge will come in handy.
I desperately need a new wheelchair. Mine is falling apart. The NHS only provide aluminium ones and they are heavy. It makes it hard for my carers to fit it in the car. I considered private options as I fundraiser for my current chair and I love it as it is titanium and super light. However, since I got this chair, there have been funding cuts and the NHS only contribute £1000 and a replica of my current chair is about £3000. I therefore had an appointment this week with NHS the wheelchair clinic and I am considering all the ways to make the NHS chair as small and light as possible. It won’t be like I have now but I need it to be reliable so I need to just go for it and make the best of what they give me.
Louie has been building the cot and crib. DIY isn’t his thing and I can’t help. He did it though so we are pretty much sorted.
I feel a bit sad this evening as my Mum, Dad, siblings, their partners, and little Grace are all off to France without us. I just can’t risk going and going into labour abroad, not with my history. If it was a normal pregnancy, I could have gone but given that the consultant said he may come from May onwards, it’s just too risky. I don’t think I could do the journey anyway. Sitting for long periods is uncomfortable. Being unable to stand up means I have to slump in my chair to make more kicking room. There will be plenty more holiday. I just hope babstays where he is, he can’t come out without his Grandma and Grandad ready and waiting to meet him.
I went home last weekend to see my Grandad for his birthday. I realised that we will have to be very organised when baby is walking. We went to the Hoe and it was me, my brother, and Grace. She was so good and helped push me but as soon as she saw the bouncy castle she was off. It’s difficult to push fast after her, especially when you are carrying a potty and colouring! We will use reins I think and have to invest in some storage for the wheelchair.
Anyway, I hope you all have a lovely weekend and I will blog again on 27th June after our next scan.
Lots of love xxx
Friday, May 17, 2019
Hello everyone
I hope all is well with you all.
Today I am 26 weeks pregnant and I really have noticed a change in the last week. Moving around using just your arms with what is becoming a big bump is tricky. I am still managing to pull myself in and out of the bath independently but we are going to set up the bath cushion next week. I am still managing to work full time and to do the 15 minute push each way to the station. I hope to do this for at least another month before working from home.
I have however had a lot of pain this week and I did pop to the hospital yesterday as I was getting a sharp pain in my left side. I also felt as though baby wasn’t moving as much when I was sat upright. This movement reduction and pain worried me a bit but I had a quick scan and baby is very happy. He has his head under my diaphragm trapping a nerve and causing the pain. This is probably due to my curved spine and nerves not quite being where they should be. My short body also doesn’t help. He likes to lay across me rather than vertically. He just needs to move so hopefully horse riding will do the trick tomorrow, it normally does.
We have seen the consultant since I last blogged and I had another scan of my back. It’s 50/50 whether.an epidural will be possible. I am going to try and manage in labour with gas and air along with intravenous pain medication. I have been told if I need a C section and the epidural doesn’t fit because of my spinal rods, I may need to have a general anaesthetic. However, I am determined to avoid this. Hopefully my leg spasms won’t be too bad as they do become worse with pain. Also, many positions in labour wouldn’t work for me so I will be restricted.
We have another growth scan next week followed by a consultant review. I will then be scanned every three weeks. Babies survive at 26 weeks now so I am thinking all the time that each week is a bonus
We had an anti-natal class this week. It was on labour and delivery. I knew a lot because of my job but I think Louie learnt a lot (some of which perhaps he wishes he hadn’t). We have another one on Tuesday on baby care.
I only have two more horse rides left. Feeling sad about not riding for a few months. It’s the only time I feel completely comfortable lately. I am so lucky to have been riding this long though.
I am off to Plymouth this weekend for some family time and to celebrate Mum and Dad’s 30th Anniversary and my sister’s engagement. It may be my last trip home before I become a Mummy as I will soon not be able to climb the stairs and I don’t like to be carried.
I will blog again after our next scan and my heart scan on 3rd June.
Take care all xxx
I hope all is well with you all.
Today I am 26 weeks pregnant and I really have noticed a change in the last week. Moving around using just your arms with what is becoming a big bump is tricky. I am still managing to pull myself in and out of the bath independently but we are going to set up the bath cushion next week. I am still managing to work full time and to do the 15 minute push each way to the station. I hope to do this for at least another month before working from home.
I have however had a lot of pain this week and I did pop to the hospital yesterday as I was getting a sharp pain in my left side. I also felt as though baby wasn’t moving as much when I was sat upright. This movement reduction and pain worried me a bit but I had a quick scan and baby is very happy. He has his head under my diaphragm trapping a nerve and causing the pain. This is probably due to my curved spine and nerves not quite being where they should be. My short body also doesn’t help. He likes to lay across me rather than vertically. He just needs to move so hopefully horse riding will do the trick tomorrow, it normally does.
We have seen the consultant since I last blogged and I had another scan of my back. It’s 50/50 whether.an epidural will be possible. I am going to try and manage in labour with gas and air along with intravenous pain medication. I have been told if I need a C section and the epidural doesn’t fit because of my spinal rods, I may need to have a general anaesthetic. However, I am determined to avoid this. Hopefully my leg spasms won’t be too bad as they do become worse with pain. Also, many positions in labour wouldn’t work for me so I will be restricted.
We have another growth scan next week followed by a consultant review. I will then be scanned every three weeks. Babies survive at 26 weeks now so I am thinking all the time that each week is a bonus
We had an anti-natal class this week. It was on labour and delivery. I knew a lot because of my job but I think Louie learnt a lot (some of which perhaps he wishes he hadn’t). We have another one on Tuesday on baby care.
I only have two more horse rides left. Feeling sad about not riding for a few months. It’s the only time I feel completely comfortable lately. I am so lucky to have been riding this long though.
I am off to Plymouth this weekend for some family time and to celebrate Mum and Dad’s 30th Anniversary and my sister’s engagement. It may be my last trip home before I become a Mummy as I will soon not be able to climb the stairs and I don’t like to be carried.
I will blog again after our next scan and my heart scan on 3rd June.
Take care all xxx
Sunday, April 21, 2019
Hey All,
So it hasn’t been long since my last blog but I know that some people had difficulty accessing the blog I did last week so I thought I would write again now.
It’s been another productive week. We have bought a lightweight car seat that fits on my lap. Now we need to get the straps made to hold it in place. We have also bought a drop side crib for upstairs to go next to the bed and a similar one which is height adjustable for downstairs. If we had one that was not drop side and adjustable I would struggle to reach in and pick the baby up. Also, Louie is tall so having the option of raising it is helpful. We have struggled to find a drop side cot bed for when he is too big for the crib so we are buying a little drop side cot which will last until he is about 2 years old. We would have liked a cot bed as they last longer but they don’t really exist with drop side and they are quite big which makes them difficult for me to access.
I need to say a big thank you to my Mum, Dad, and Louie who finished the nursery this weekend. We have a perfect table as a changing unit. Just a white table on legs. Just the right height for my chair to go underneath. Only 16 pounds too. It all looks so lovely up there now. Just waiting for the blinds.
I have followed advice from my consultant and started to pack my hospital bag. It’s tough as he may not come early. We have just got a few dinky vests and size one nappies. If we don’t need them, we will donate them to charity.
I have really noticed the difference in my comfort levels this week, I am fine in my chair for a few hours but then my tummy just feels cramped and I have to change position. I think this will only get worse. On a positive note, my previously slightly elevated blood pressure is now nice and low which reduces the chances of early labour. Let’s hope it stays that way. It should do if I keep going with the Clexane and Aspirin.
The baby really kicks now too. Very reassuring. I have a big day on 7th June. Going to the hospital to have my next heart scan. A pregnant lady’s heart is under most stress at 28 weeks pregnant. This is therefore the time when any side effects of the chemotherapy I had will show on a scan. I will then see the consultant and the anaesthetist. They will assess my spine to check if they can administer an epidural in between the metalwork. I am hopeful they can as they have done so before even since my surgery. We will also have a growth scan the same day and every three weeks thereafter.
We have a consultant appointment this week and then in three weeks we have our anti-natal classes. Morally you wouldn’t go until 30 weeks but we have been advised to attend these classes earlier due to the increased risk of premature labour.
I also have some great news on the Carer front. We have found three ladies who we hope to employ. Finishing the interviews this week. Fingers crossed.
My niece Grace who is 2 has been staying with us this weekend. I have had lots of practice at lifting her on and off the stair lift. She loves it and loves riding on my lap. She isn’t phased by my chair because she has known no different. I’m sure our baby will enjoy the free rides too.
Thank you everyone for your support. Lots of love.
So it hasn’t been long since my last blog but I know that some people had difficulty accessing the blog I did last week so I thought I would write again now.
It’s been another productive week. We have bought a lightweight car seat that fits on my lap. Now we need to get the straps made to hold it in place. We have also bought a drop side crib for upstairs to go next to the bed and a similar one which is height adjustable for downstairs. If we had one that was not drop side and adjustable I would struggle to reach in and pick the baby up. Also, Louie is tall so having the option of raising it is helpful. We have struggled to find a drop side cot bed for when he is too big for the crib so we are buying a little drop side cot which will last until he is about 2 years old. We would have liked a cot bed as they last longer but they don’t really exist with drop side and they are quite big which makes them difficult for me to access.
I need to say a big thank you to my Mum, Dad, and Louie who finished the nursery this weekend. We have a perfect table as a changing unit. Just a white table on legs. Just the right height for my chair to go underneath. Only 16 pounds too. It all looks so lovely up there now. Just waiting for the blinds.
I have followed advice from my consultant and started to pack my hospital bag. It’s tough as he may not come early. We have just got a few dinky vests and size one nappies. If we don’t need them, we will donate them to charity.
I have really noticed the difference in my comfort levels this week, I am fine in my chair for a few hours but then my tummy just feels cramped and I have to change position. I think this will only get worse. On a positive note, my previously slightly elevated blood pressure is now nice and low which reduces the chances of early labour. Let’s hope it stays that way. It should do if I keep going with the Clexane and Aspirin.
The baby really kicks now too. Very reassuring. I have a big day on 7th June. Going to the hospital to have my next heart scan. A pregnant lady’s heart is under most stress at 28 weeks pregnant. This is therefore the time when any side effects of the chemotherapy I had will show on a scan. I will then see the consultant and the anaesthetist. They will assess my spine to check if they can administer an epidural in between the metalwork. I am hopeful they can as they have done so before even since my surgery. We will also have a growth scan the same day and every three weeks thereafter.
We have a consultant appointment this week and then in three weeks we have our anti-natal classes. Morally you wouldn’t go until 30 weeks but we have been advised to attend these classes earlier due to the increased risk of premature labour.
I also have some great news on the Carer front. We have found three ladies who we hope to employ. Finishing the interviews this week. Fingers crossed.
My niece Grace who is 2 has been staying with us this weekend. I have had lots of practice at lifting her on and off the stair lift. She loves it and loves riding on my lap. She isn’t phased by my chair because she has known no different. I’m sure our baby will enjoy the free rides too.
Thank you everyone for your support. Lots of love.
Thursday, April 11, 2019
Hello All,
It’s been a busy week this week. I had Monday off work as I had a private horse riding lesson. It was nice to ride on my own and really helped my legs.
We then had our 20 week scan. Everything is fine with our baby. He was a bit naughty though and was quite happy to move his legs and arms but refused to change positions to allow the lady scanning him to view his spine. She was doing a thorough check for lesions and curvature (well she was trying to anyway). I had to go to the toilet to see if moving from bed to chair etc would make him move. He still refused so the lady had to get a more senior radiologist to come in and check his lumber spine. They were both happy with everything and his growth is bang on track except for his long legs which I think he gets from his Daddy and Grandad Billy.
Whilst I was there I also had the hooping cough vaccine. I have had a sore, swollen arm all week which is normal but annoying when you use your arms for moving around.
The dressage competition went well today. Lisa the pony was a good girl considering it was her first competition. She stopped when asked and I was pleased with my score. It was such a beautiful sunny day.
Still battling to find a carer. We have a new recruitment agency helping us now and they are really good. We have a few possibilities to follow up so fingers crossed.
As I am sat here writing this, the baby is kicking away, such a lovely feeling but it’s a shame he stops as soon as someone else tries to feel.
My new bath cushion arrived so bath time will be much easier now. Someone from my work is also coming around tomorrow to set up a more suitable work station. I get neck pain when I lean over my laptop for long periods so want to ensure I have a better posture when I work from home more frequently as the pregnancy progresses.
Anyway, I will blog again soon but please share and feel free to ask me any questions.
It’s been a busy week this week. I had Monday off work as I had a private horse riding lesson. It was nice to ride on my own and really helped my legs.
We then had our 20 week scan. Everything is fine with our baby. He was a bit naughty though and was quite happy to move his legs and arms but refused to change positions to allow the lady scanning him to view his spine. She was doing a thorough check for lesions and curvature (well she was trying to anyway). I had to go to the toilet to see if moving from bed to chair etc would make him move. He still refused so the lady had to get a more senior radiologist to come in and check his lumber spine. They were both happy with everything and his growth is bang on track except for his long legs which I think he gets from his Daddy and Grandad Billy.
Whilst I was there I also had the hooping cough vaccine. I have had a sore, swollen arm all week which is normal but annoying when you use your arms for moving around.
The dressage competition went well today. Lisa the pony was a good girl considering it was her first competition. She stopped when asked and I was pleased with my score. It was such a beautiful sunny day.
Still battling to find a carer. We have a new recruitment agency helping us now and they are really good. We have a few possibilities to follow up so fingers crossed.
As I am sat here writing this, the baby is kicking away, such a lovely feeling but it’s a shame he stops as soon as someone else tries to feel.
My new bath cushion arrived so bath time will be much easier now. Someone from my work is also coming around tomorrow to set up a more suitable work station. I get neck pain when I lean over my laptop for long periods so want to ensure I have a better posture when I work from home more frequently as the pregnancy progresses.
Anyway, I will blog again soon but please share and feel free to ask me any questions.
Friday, April 5, 2019
Evening All,
So we are at the half way point as I am 20 weeks pregnant today! I am currently sat on a train to Birmingham travelling to spend the weekend with two of my university friends. I thought I would use this time as an opportunity to update you all on my progress
I have noticed some real changes over the last 3 weeks or so not only in the fact that I now have a bump but also in that some tasks are getting more difficult. As I do not have much movement in my legs, every transfer I do from my chair to the toilet etc requires me to put all of my weight on my arms. Obviously the baby isn’t weighing much but the weight of the fluid is making me feel that bit heavier and moving that bit more challenging. When you only weigh 6.5 stone, an extra few pounds is a big difference on your arms. The hill from work is also more difficult. I have to stop for two rests now whereas before I got up there quicker than most people walking.
I am having a special bath cushion delivered on Monday. Pulling myself in and out of the bath on my own is no longer safe. The cushion goes in the bottom of the bath and as you inflate and deflate it, it lowers and raises you in and out of the tub. Elsa the cat loved it when I trialled it!
I have been suffering with heart burn. This is more common in women who are pregnant but especially those who are small. My curved spine means my organs aren’t quite where they should be and it’s all a bit squashed in there. When the stomach is compressed, it makes more acid. Leaning forwards to put my shoes (which I do because my legs aren’t that flexible) makes the burning worse. Never mind, it will all be worth it when baby arrives.
Louie gave the nursery it’s first coat of paint last weekend. As the baby may come early, I want to be prepared. My lovely Mummy and Daddy are coming at Easter to help build the furniture. That is one thing I can’t do is decorate but I am lucky to have support around me.
We still haven’t found a Carer but the latest advert is on my Facebook page. Please share. There must be someone out there somewhere. I have an agency who can help as back up but they can’t transport the baby in the car so it’s not an ideal scenario.
I am still injecting blood thinners and taking Aspirin. When you don’t move you are more at risk of clots. I am still riding and have stayed off my Baclofen. I am even doing a dressage competition next Friday. I hope my jacket does up!
We are buying the car seat this weekend to send it to be adapted and Dad will do the changing table at Easter. It’s hard to buy clothes and other essentials as I don’t know when our little boy will arrive. Don’t want to waste money on premature baby clothes in case they aren’t needed.
We have our 20 week scan on Thursday. We will be having slightly more detailed imaging taken of the baby’s spine due to them being unsure if my cancer was present in the womb. They have reassured us that it rarely runs in families but it’s good to have the check.
Anyway, I will blog again after the scan and my competition on Friday. Take care everyone x
So we are at the half way point as I am 20 weeks pregnant today! I am currently sat on a train to Birmingham travelling to spend the weekend with two of my university friends. I thought I would use this time as an opportunity to update you all on my progress
I have noticed some real changes over the last 3 weeks or so not only in the fact that I now have a bump but also in that some tasks are getting more difficult. As I do not have much movement in my legs, every transfer I do from my chair to the toilet etc requires me to put all of my weight on my arms. Obviously the baby isn’t weighing much but the weight of the fluid is making me feel that bit heavier and moving that bit more challenging. When you only weigh 6.5 stone, an extra few pounds is a big difference on your arms. The hill from work is also more difficult. I have to stop for two rests now whereas before I got up there quicker than most people walking.
I am having a special bath cushion delivered on Monday. Pulling myself in and out of the bath on my own is no longer safe. The cushion goes in the bottom of the bath and as you inflate and deflate it, it lowers and raises you in and out of the tub. Elsa the cat loved it when I trialled it!
I have been suffering with heart burn. This is more common in women who are pregnant but especially those who are small. My curved spine means my organs aren’t quite where they should be and it’s all a bit squashed in there. When the stomach is compressed, it makes more acid. Leaning forwards to put my shoes (which I do because my legs aren’t that flexible) makes the burning worse. Never mind, it will all be worth it when baby arrives.
Louie gave the nursery it’s first coat of paint last weekend. As the baby may come early, I want to be prepared. My lovely Mummy and Daddy are coming at Easter to help build the furniture. That is one thing I can’t do is decorate but I am lucky to have support around me.
We still haven’t found a Carer but the latest advert is on my Facebook page. Please share. There must be someone out there somewhere. I have an agency who can help as back up but they can’t transport the baby in the car so it’s not an ideal scenario.
I am still injecting blood thinners and taking Aspirin. When you don’t move you are more at risk of clots. I am still riding and have stayed off my Baclofen. I am even doing a dressage competition next Friday. I hope my jacket does up!
We are buying the car seat this weekend to send it to be adapted and Dad will do the changing table at Easter. It’s hard to buy clothes and other essentials as I don’t know when our little boy will arrive. Don’t want to waste money on premature baby clothes in case they aren’t needed.
We have our 20 week scan on Thursday. We will be having slightly more detailed imaging taken of the baby’s spine due to them being unsure if my cancer was present in the womb. They have reassured us that it rarely runs in families but it’s good to have the check.
Anyway, I will blog again after the scan and my competition on Friday. Take care everyone x
Sunday, March 10, 2019
Hi All,
I hope you are all well.
As many of you will know from my Facebook post earlier today, we had another scan this morning and were informed that we are having a little BOY. Whilst the most important thing was that the baby was healthy, those of you who know Louie will know that deep down he wanted a little boy so we are both very happy. The name is not being revealed until after he is born. He is growing nicely and we heard his heartbeat for the first time which was lovely.
Since I last blogged, I have been feeling quite well in myself. I am still horse riding and keeping active. I must admit the hill from work to the station is getting a bit tougher but it is good to get my heart rate up and try and keep fit. I did have some lower abdominal pain a couple of weeks ago but this was confirmed to be bladder irritation caused by the baby moving out of my pelvis. As I am so small, there isn’t much room In there. The doctor thinks the baby maybe kicking my bladder. I have been reassured that as the baby moves up, the pain should settle
I am starting to develop a bump now and I can feel bubbles when the baby is moving which is all very exciting.
I have noticed that I cannot manage big meals anymore so I need to eat and drink little and often. Even a can of coke is too much for me now which is saying something given how much I love my coke.
As mentioned in my previous blog, carers currently help me twice daily but sadly my current agency is not able to help me when I have the baby as they don’t have insurance to be in the property with children unless an able bodied adult is present. The council is therefore recruiting for a Personal Assistant to work with me doing household tasks and taking me and baby to baby classes. I would be grateful if anyone in the Bristol area would keep an ear out for anyone looking for around 20 hours a week of work. Timings are flexible but would need to be when Louie is at work in the day.
Thank you to everyone who messaged me after my last blog with suggestions for car seats to go on the front of my chair. Unfortunately, the only ones that are on the market are basically prams that clip on the front. The reviews are terrible as they can only go in a straight line. They are similar to the shopping trolleys that clip onto the wheelchair at supermarkets. I have used these before and they don’t really work on the flat let alone on a hill. I have now found a charity who are making attachments so that a car seat can be fitted to my wheelchair frame, no extra wheels needed. I am also having a stair gate made that will work with my stair lift. We are buying a cot and then the side will be cut and made into a door so I can open the door and reach to pick up our baby. This is much safer than the drop side cots which are no longer deemed safe and are being discontinued. I have even found a baby bath on a stand that will mean I can bath the baby without having to reach down. So all in all, I am feeling quite positive. All I need now is some duck egg bedding for the nursary.
We have another scan at 20 weeks and due to my size, a scan will be done every three weeks from 28 weeks.
I am currently having a night away at Celtic Manor with Louie to celebrate.
I will blog again soon but if anyone has any questions, please do not hesitate to ask. I want to raise as much awareness as possible.
I hope you are all well.
As many of you will know from my Facebook post earlier today, we had another scan this morning and were informed that we are having a little BOY. Whilst the most important thing was that the baby was healthy, those of you who know Louie will know that deep down he wanted a little boy so we are both very happy. The name is not being revealed until after he is born. He is growing nicely and we heard his heartbeat for the first time which was lovely.
Since I last blogged, I have been feeling quite well in myself. I am still horse riding and keeping active. I must admit the hill from work to the station is getting a bit tougher but it is good to get my heart rate up and try and keep fit. I did have some lower abdominal pain a couple of weeks ago but this was confirmed to be bladder irritation caused by the baby moving out of my pelvis. As I am so small, there isn’t much room In there. The doctor thinks the baby maybe kicking my bladder. I have been reassured that as the baby moves up, the pain should settle
I am starting to develop a bump now and I can feel bubbles when the baby is moving which is all very exciting.
I have noticed that I cannot manage big meals anymore so I need to eat and drink little and often. Even a can of coke is too much for me now which is saying something given how much I love my coke.
As mentioned in my previous blog, carers currently help me twice daily but sadly my current agency is not able to help me when I have the baby as they don’t have insurance to be in the property with children unless an able bodied adult is present. The council is therefore recruiting for a Personal Assistant to work with me doing household tasks and taking me and baby to baby classes. I would be grateful if anyone in the Bristol area would keep an ear out for anyone looking for around 20 hours a week of work. Timings are flexible but would need to be when Louie is at work in the day.
Thank you to everyone who messaged me after my last blog with suggestions for car seats to go on the front of my chair. Unfortunately, the only ones that are on the market are basically prams that clip on the front. The reviews are terrible as they can only go in a straight line. They are similar to the shopping trolleys that clip onto the wheelchair at supermarkets. I have used these before and they don’t really work on the flat let alone on a hill. I have now found a charity who are making attachments so that a car seat can be fitted to my wheelchair frame, no extra wheels needed. I am also having a stair gate made that will work with my stair lift. We are buying a cot and then the side will be cut and made into a door so I can open the door and reach to pick up our baby. This is much safer than the drop side cots which are no longer deemed safe and are being discontinued. I have even found a baby bath on a stand that will mean I can bath the baby without having to reach down. So all in all, I am feeling quite positive. All I need now is some duck egg bedding for the nursary.
We have another scan at 20 weeks and due to my size, a scan will be done every three weeks from 28 weeks.
I am currently having a night away at Celtic Manor with Louie to celebrate.
I will blog again soon but if anyone has any questions, please do not hesitate to ask. I want to raise as much awareness as possible.
Thursday, February 21, 2019
Hi Everyone
My name is Amy Connelly and I am a 28 year old wheelchair user. I have decided to write this blog because, against the odds, I have become pregnant. I have found very little information online to support people with physical disabilities who are pregnant and I hope that by sharing my experiences, I can help others.
So, by way of background, at just 6 months old I was diagnosed with a type of cancer called neuroblastoma which was in my spine, bone marrow, liver, chest wall, and eventually on my optic nerve. The spinal tumour was surgically removed but I developed a curvature of the spine and the nerves supplying my legs were permanently damaged. I also required chemotherapy and radiotherapy before I was eventually in remission by the time I was 2 years old.
I have been in remission ever since but I have been in a wheelchair all my life. I had surgery when I was 12 years old to correct my curved spine but the rmetal rods snapped twice just 3 years later meaning I underwent the 12 hour surgery 3 times. I have also had surgery on my feet and eyes.
My parents were told that I would probably never walk (which was true) but also that I would be unable to read without brail and would not live independently.
I went to a school for special needs children until I was 8 years old but I then moved to main stream education. I obtained 9 GCSEs and 5 A levels before I left my home town of Plymouth to go to the University of Birmingham where I completed a language degree which involved living in Italy independently for a yeah before spending a summer in Spain. I then completed a law conversion course (a law degree in a year) before doing my Legal Practicr Course.
I now work for a national law firm and hope to qualify as a solicitor soon. I live with my partner of 5 years Louie who does not have a disability. We bought our first home in August 2016 in Bristol where we live with our cat Elsa. The house has a stair lift but apart from that it is just a normal house. I climb (using just my arms) in and out of the bath and do what I can in the kitchen to cook meals although Louie does most of the meal as I struggle to reach the hob.
I can wash and dress myself but we have carers twice daily to take me to and from the train station as I have to commute an hour each way to work. They also help with cleaning and laundry as Louie also works full time.
I was always warned that there was a possibility that the chemotherapy and radiotherapy may cause problems when it came to having a child so we were extremely shocked when in December 2018 I became pregnant whilst on the pill.
My parents and extended family have been so supportive but we have had a lot of people questioning how we will cope. Luckily, I am quite used to thinking of creative solutions and we have already thought of solutions to some of the problems we can foresee.
I have seen my consultant who has warned that because I am less than 7 stone, my baby will be small and premature. The due date is 23rd August 2019 but we have been told that the birth is likely to be in July 2019 or perhaps even earlier.
Many of my friends assumed I would have a C section and whilst that is always a possibility, the consultant has said that as I have feeling in my lower body, a vaginal birth is still an option.
The main difficulty to begin with was with medication. I was taking a muscle relaxant called Baclofen and Tramadol for back pain. Both of these medications are not recommended in early pregnancy. Fortunately, I horse ride at Avon Riding Centre which has always helped to keep my muscles relaxed. Riding means that I can reduce the dosage of the medications I take by more than half which reduces side effects. Since becoming pregnant, I have swapped the Baclofen for 2mg of Diazopan at night and Codeine Phosphate when needed which, combined with a gentle weekly horse ride, seem to be doing the trick and are thought to be safe for the baby. I am hoping to ride for another 6 weeks by which time the baby will be developed enough for me to go back on stronger medication.
I have also had to inject Clexane everyday, (I have had to get over my phobia of needles quickly). This treatment is needed because of my reduced mobility and pregnancy increasing the risk of blood clots. The needle is very thin and I hardly feel it now.
One of the chemotherapy medications I received, Epirubicin, can cause weakening of the heart muscle. I have had 5 yearly heart scans but as my heart is under extra strain in pregnancy, I had another scan at 8 weeks gestation and this will be repeated at 28 weeks.
We had a scan privately at 7 weeks. I was so nervous that taking my medication before I found out I was pregnant may have caused damage to the baby. To be told that all was well was a big relief and the 12 week scan was also normal. The sonographers have found scanning me more difficult as the baby is on my left side due to my curved spine. The doctors say this won’t be an issue
I am in the process of getting a bath lift and I plan to contact a Bristol based charity called Remap who help make equipment for disabled people. We plan to buy 2 cribs so we can have one upstairs and one for the baby to nap in downstairs. My dad is also going to make a changing table as the usual units do not fit my wheelchair underneath. We have searched for car seats to go on the front of my wheelchair but no luck so far. I will keep trying. We have purchased a sling that will enable me to carry the baby but have my arms free to wheel myself.
I am 14 weeks pregnant tomorrow and the feeling of sickness has stopped. I was never actually sick so I shouldn’t complain. I do feel more tired and even though my bump is small, I have noticed my transfers from wheelchair to car etc are more tiring. I just need to keep active.
We have another scan 2 weeks on Sunday to confirm the gender and check baby’s growth. I will blog again after the scan.
My name is Amy Connelly and I am a 28 year old wheelchair user. I have decided to write this blog because, against the odds, I have become pregnant. I have found very little information online to support people with physical disabilities who are pregnant and I hope that by sharing my experiences, I can help others.
So, by way of background, at just 6 months old I was diagnosed with a type of cancer called neuroblastoma which was in my spine, bone marrow, liver, chest wall, and eventually on my optic nerve. The spinal tumour was surgically removed but I developed a curvature of the spine and the nerves supplying my legs were permanently damaged. I also required chemotherapy and radiotherapy before I was eventually in remission by the time I was 2 years old.
I have been in remission ever since but I have been in a wheelchair all my life. I had surgery when I was 12 years old to correct my curved spine but the rmetal rods snapped twice just 3 years later meaning I underwent the 12 hour surgery 3 times. I have also had surgery on my feet and eyes.
My parents were told that I would probably never walk (which was true) but also that I would be unable to read without brail and would not live independently.
I went to a school for special needs children until I was 8 years old but I then moved to main stream education. I obtained 9 GCSEs and 5 A levels before I left my home town of Plymouth to go to the University of Birmingham where I completed a language degree which involved living in Italy independently for a yeah before spending a summer in Spain. I then completed a law conversion course (a law degree in a year) before doing my Legal Practicr Course.
I now work for a national law firm and hope to qualify as a solicitor soon. I live with my partner of 5 years Louie who does not have a disability. We bought our first home in August 2016 in Bristol where we live with our cat Elsa. The house has a stair lift but apart from that it is just a normal house. I climb (using just my arms) in and out of the bath and do what I can in the kitchen to cook meals although Louie does most of the meal as I struggle to reach the hob.
I can wash and dress myself but we have carers twice daily to take me to and from the train station as I have to commute an hour each way to work. They also help with cleaning and laundry as Louie also works full time.
I was always warned that there was a possibility that the chemotherapy and radiotherapy may cause problems when it came to having a child so we were extremely shocked when in December 2018 I became pregnant whilst on the pill.
My parents and extended family have been so supportive but we have had a lot of people questioning how we will cope. Luckily, I am quite used to thinking of creative solutions and we have already thought of solutions to some of the problems we can foresee.
I have seen my consultant who has warned that because I am less than 7 stone, my baby will be small and premature. The due date is 23rd August 2019 but we have been told that the birth is likely to be in July 2019 or perhaps even earlier.
Many of my friends assumed I would have a C section and whilst that is always a possibility, the consultant has said that as I have feeling in my lower body, a vaginal birth is still an option.
The main difficulty to begin with was with medication. I was taking a muscle relaxant called Baclofen and Tramadol for back pain. Both of these medications are not recommended in early pregnancy. Fortunately, I horse ride at Avon Riding Centre which has always helped to keep my muscles relaxed. Riding means that I can reduce the dosage of the medications I take by more than half which reduces side effects. Since becoming pregnant, I have swapped the Baclofen for 2mg of Diazopan at night and Codeine Phosphate when needed which, combined with a gentle weekly horse ride, seem to be doing the trick and are thought to be safe for the baby. I am hoping to ride for another 6 weeks by which time the baby will be developed enough for me to go back on stronger medication.
I have also had to inject Clexane everyday, (I have had to get over my phobia of needles quickly). This treatment is needed because of my reduced mobility and pregnancy increasing the risk of blood clots. The needle is very thin and I hardly feel it now.
One of the chemotherapy medications I received, Epirubicin, can cause weakening of the heart muscle. I have had 5 yearly heart scans but as my heart is under extra strain in pregnancy, I had another scan at 8 weeks gestation and this will be repeated at 28 weeks.
We had a scan privately at 7 weeks. I was so nervous that taking my medication before I found out I was pregnant may have caused damage to the baby. To be told that all was well was a big relief and the 12 week scan was also normal. The sonographers have found scanning me more difficult as the baby is on my left side due to my curved spine. The doctors say this won’t be an issue
I am in the process of getting a bath lift and I plan to contact a Bristol based charity called Remap who help make equipment for disabled people. We plan to buy 2 cribs so we can have one upstairs and one for the baby to nap in downstairs. My dad is also going to make a changing table as the usual units do not fit my wheelchair underneath. We have searched for car seats to go on the front of my wheelchair but no luck so far. I will keep trying. We have purchased a sling that will enable me to carry the baby but have my arms free to wheel myself.
I am 14 weeks pregnant tomorrow and the feeling of sickness has stopped. I was never actually sick so I shouldn’t complain. I do feel more tired and even though my bump is small, I have noticed my transfers from wheelchair to car etc are more tiring. I just need to keep active.
We have another scan 2 weeks on Sunday to confirm the gender and check baby’s growth. I will blog again after the scan.
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