Maya's 2nd Month
November to December 2011
A new month and a new start - or so we thought!
'This is it!!' time to show off our beautiful little girl, we just hoped the world was ready for Maya!
First port of call had to be Cafe Nero to see Aunty Heather and I craved a good cup of coffee so off we headed all wrapped up warm in to Bolton. What better than Neros to make our base for the day to show off Maya to the world. We had so many visitors, so many people waiting to meet Maya. It was wonderful. Thank you everyone!
2 days later we thought something was up. We noticed some fluid had started to leak from between the stitches where Maya's shunt was inserted. We took Maya straight to A&E just to be on the safe side. Maya was seen by a Neurosurgeon and was given the all clear and we headed home with some new dressings to cover it up.
The next day things went from bad to worse. Maya started crying and crying and crying. We didn't know what was wrong. Was it just the shock of coming home? Colic? Teething? Tired? Hungry? Nappy changing? this wasn't our Maya, the content peaceful baby girl who loved cuddles, playing and attention. Something wasn't right! We tried everything, several times! We took her temperature, it was fine. There was nothing we could find that would cause her to be so upset. After a few hours we got really worried and we took Maya to see her GP. We arrived at the surgery and went straight in to see the GP and I explained the situation and that this wasn't what Maya was usually like but as we are relatively new to all this could it be signs of colic or other usual baby problems. The GP shrugged it off but we weren't happy. This wasn't what our little Maya was like. The GP referred us to see a Pediatrician at the hospital because our GP didn't want to pass comment on what might be wrong due to Maya's underlying conditions. As her GP wasn't too worried we left with no real urgency up to the hospital to see the pediatrician. I don't think anything could have prepared us for what was coming.
After 8 hours wait in Bolton hospital Maya was transferred to Manchester hospital at our request. Maya's health was deteriorating rapidly. We sat in the assessment unit watching our little girl get worse and worse and worse. To start with Maya went off her milk, became very drowsy, sensitive to light, irritable, looked in pain and kept arching her back. Her eyes then started drifting and eventually rolling backwards. She became 'jumpy' for no particular reason and She became less and less responsive to us. By the time we reached Manchester A&E department by blue light ambulance she had spiked a fever and kept going in and out consciousness. When she was a wake she was sensitive to light, irritable and crying, being sick constantly, she had no appetite and nothing would make her feel better. Within 2 hours of reaching Manchester Maya had been diagnosed with Meningitis.
The doctors started Maya on an intense course of antibiotics and looked after in critical care whilst consulting with her Neurosurgeon on what to do next. In the early hours of the morning Maya was taken to theatre to remove her shunt and an External Ventricular Drain (EVD) was inserted. She then went in to Recovery and about an hour later transferred to the Intensive care Unit at Manchester Children's hospital. Maya remained on ITU for approximately 1 week and then moved on to Ward 78 (Neuro) when an isolation room became available.
The next day things went from bad to worse. Maya started crying and crying and crying. We didn't know what was wrong. Was it just the shock of coming home? Colic? Teething? Tired? Hungry? Nappy changing? this wasn't our Maya, the content peaceful baby girl who loved cuddles, playing and attention. Something wasn't right! We tried everything, several times! We took her temperature, it was fine. There was nothing we could find that would cause her to be so upset. After a few hours we got really worried and we took Maya to see her GP. We arrived at the surgery and went straight in to see the GP and I explained the situation and that this wasn't what Maya was usually like but as we are relatively new to all this could it be signs of colic or other usual baby problems. The GP shrugged it off but we weren't happy. This wasn't what our little Maya was like. The GP referred us to see a Pediatrician at the hospital because our GP didn't want to pass comment on what might be wrong due to Maya's underlying conditions. As her GP wasn't too worried we left with no real urgency up to the hospital to see the pediatrician. I don't think anything could have prepared us for what was coming.
After 8 hours wait in Bolton hospital Maya was transferred to Manchester hospital at our request. Maya's health was deteriorating rapidly. We sat in the assessment unit watching our little girl get worse and worse and worse. To start with Maya went off her milk, became very drowsy, sensitive to light, irritable, looked in pain and kept arching her back. Her eyes then started drifting and eventually rolling backwards. She became 'jumpy' for no particular reason and She became less and less responsive to us. By the time we reached Manchester A&E department by blue light ambulance she had spiked a fever and kept going in and out consciousness. When she was a wake she was sensitive to light, irritable and crying, being sick constantly, she had no appetite and nothing would make her feel better. Within 2 hours of reaching Manchester Maya had been diagnosed with Meningitis.
The doctors started Maya on an intense course of antibiotics and looked after in critical care whilst consulting with her Neurosurgeon on what to do next. In the early hours of the morning Maya was taken to theatre to remove her shunt and an External Ventricular Drain (EVD) was inserted. She then went in to Recovery and about an hour later transferred to the Intensive care Unit at Manchester Children's hospital. Maya remained on ITU for approximately 1 week and then moved on to Ward 78 (Neuro) when an isolation room became available.
*Blanket handmade by Heather Dovey, Hungry caterpillar soft toy from Grandad Jim and Nanna Ursula
Maya remained on ward 78 for 4 weeks under the care of the Neuro-specialists and was given an intense course of antibiotics to treat the meningitis. On the 24th November Maya wnt for her 4th operation to insert a Hickman central line into Maya's chest to make the administration of her antibiotics easier, due to several failed attempts at canulating her.
*Blanket homemade by Heather Dovey, Mobile by Vtech,Dumbo from Disney store, small hungry caterpillar toy homemade by Heather Dovey
We bought Maya the 'Fisherprice Rainforest gym' This was ideal for Maya as it fit in her hospital cot. The toy gym has lots of toys, bright colours, lights and music which helped to encourage Maya's development even while she was in hospital
Because Maya's EVD was pressure based it was very difficult to move her from her cot. We were advised it was best to keep Maya lying as flat as possible, as much as possible so cuddles became a very rare thing. In order for Maya to be taken out of her cot her EVD had to be turned off meaning the CSF built up in her head again causing pressure on her brain. There were also many wires and monitors to contend with and the help of Maya's nurse was much needed.
*Widgy from Asda
Getting ready for Maya's 1st Christmas - 18th December
In true 'Dovey' style we decorated Maya's room in tinsel, baubles, decorations, fairy lights and she even had her own little tree and a Reindeer outfit that Aunty Heather brought her. Maya also had pretty decorations to hang on her tree from the Manchester Christmas markets that Nana and Pops got her and a big red 'Baby's 1st Christmas' bauble from her Grandad Jim and Nanna Ursula. Her room looked beautiful!
Paper trees were given to all the children on the ward for them to decorate and put by their beds. Maya decorated hers with hand and footprints!
*Reindeer suit from Asda, Tree, Lights and decorations from Asda from Aunty Heather, Nana and Pops, 1st Christmas Bauble from Past times from Nanna Ursula and Grandad Jim
20th December 2011
Coming Home Round 2!!! On the 20th December 2011 at 5pm we were discharged from Ward 78 to go home for the second time. We packed up all our things, dismantled all our Christmas decorations and Maya's first Christmas tree and brought them all home. Below are our first pictures on returning home.
The Very Hungry Caterpillar
Maya has continued to be breast milk fed through Expressed breast milk bottle feeds or from the breast where possible. We have continued to face challenges with breast feeding through not been able to take Maya out of her cot due to having an EVD inserted in her head. We have fed her through a gastro-nasal tube and over the cot side many a time or to have her nurse or relatives stand holding canular tubes or monitor wires and her EVD while we take her out of the cot and fed her. For her to vomit up all your hard work because of the medication or the pressure in her head or wind. We succeed to not only maintain Maya's weight above her birth weight but for her to put on 6oz. With all the help and support of her fantastic nurses, doctors and consultants as well as our loving family Maya was discharged from hospital weighing 8lb 5oz.
Additional Care
Obviously in this very stressful and uncertain month Maya has needed the care of so many health care professionals. From doctors, consultants, surgeons, anesthetists, respiratory specialists, specialist nurses, nurses, healthcare assistants, play workers, feeding nurses, catering staff, cleaners and ambulance crew and paramedics, porters and many more. Without everyone's commitment to their job Maya would not be the happy, well girl we have now. There quick response to our concerns and their proficiency in their work as well as skill saved our daughters life and supported us through very hard times.