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