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
Tuesday, August 27, 2019
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
Subscribe to:
Posts (Atom)