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Claire Jackson avatar
Claire Jackson

Liv Life Adventure - The Big 3 Challenge

3 Longest Lakes/3 Highest Peaks/3 Cycle Passes-1Wk for Birmingham Women's Hospital because without them Olivia wouldn't of survived...

124 %
£6,220.50
raised of £5,000 target
by 176 supporters
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Birmingham Women's Hospital

We support Birmingham Women's Hospital to give women and babies the best care

Charity Registration No. 1160875

Story

Our Challenge is to complete the following in a week:
Scotland
    - Loch Awe 24 mile Kayak
    - Ben Nevis - 1345m Hike
    - 30 mile Cycle
England
    - Scafell Pike 978m Hike
    - Lake Windermere – 11 mile Kayak
    - 20 mile Cycle
Wales
    - Lake Bala – 7 mile Kayak
    - 25 mile Cycle
    - Snowdon – 1085m Hike

So why would I want to put myself and sister through this pain??


If you just want the short story…

Olivia was born with a rare condition called Congenital Chylothorax (the accumulation of chyle in the pleural space - "fluid on the lungs"). In the month prior to birth the Fetal Medicine Department monitored Olivia closely and had already performed a pleural drainage to prevent Hydrops Fetalis (a fatal neonate condition) and then again immediately before an emergency C. Following her birth at 36wks she spent another month in the Neonatal Intensive Care Unit (NICU) and Special Baby Unit. The amazing staff at the Birmingham Women’s Hospital did everything necessary to keep her alive and stop the fluid from reoccurring. The work that they do in this hospital is truly inspiring and pioneering, but to keep up these fantastic services costs a fortune. Coming from the small city of Hereford we are so lucky to be in the catchment of this incredible center. There is no night and day on the unit as every moment is crucial as babies conditions change so quickly. Without their intervention and expertise Olivia wouldn’t be at home with us today. Birmingham Women’s Hospital Charity fund patience welfare services, innovative equipment, research and development.

I especially struggled with the tough time we had been through. Not many people leave the hospital with a baby feeling so disconnected, as soon as I found out there was a problem in my pregnancy I prepared myself for the worst and it took me longer to adjust to actually bringing Olivia home and believing she was here to stay. So planning and starting training for this challenge has given me a focus and the drive to do something good out of this experience and has got me through. That is why we are now asking you to help us raise as much money as possible and the reason behind this crazy challenge.


*All money raised is being directed specifically to Birmingham Women’s Fetal Medince and NICU departments, 50/50.*

*£1,200 - the cost of a baby staying on the unit for 1 day (our target is nowhere near the cost of Olivia's stay or the treatment she receive pre birth and follow up)

*£1000 - could pay for vital incubator warming pads (Olivia was a giant baby compared to the micro premies so she was in an open top cot with heat pad rather than an in closed incubator)

*£500 - could pay for a Handheld Oximeter - monitors oxygen and detects severe infections

*£100 - could pay for special breast pumps (although Olivia couldn't have my milk until 3mths old I still pumped everyday so that she could have some of the good stuff eventually - access to a double pump was so valuable)

*£90 - could pay for 6 "Freddie Frogs" positioning tools (as modelled by Olivia in the cover photo)

*£15 - could pay for a MiniBoo comforter - a cuddle cloth used to carry mummy's scent when babies cant be frequently held. (Olivia wasn't held for the first week so this was the only way of getting my scent near her)



If your interested in the full story here it is...

At my 32 week placenta check scan a routine growth check highlighted an abnormality where fluid was appearing in Oliva’s lung cavity. Within 48 hours we were sat with the head of fetal medicine in Birmingham being told a whole host of horrendous things that could be wrong as this was a structural abnormality, after loads of tests and a couple of weeks of waiting we still had no answers. Weekly scans showed the volume of fluid was getting more and was starting to put pressure on her heart which was starting to cause something called Hydrops Fetalis (a fatal condition in neonates). The plan was to keep Olivia inside as long as possible and to get her past the crucial 36 weeks but they needed to stop Hydrops from developing. That way she would be as big and strong as possible to be treated once she was born. 


At 34 weeks a pleural drainage was carried out to take the pressure off the heart and stop Hydrops – using the ultra sound for guidance, over 120ml of fluid was drained through a really long needle and syringe without any anesthetic. We waited and hoped that the fluid just wouldn't return as all the tests had come back inconclusive, but it did and more than before and now showing significantly on both lungs. It wasn’t an option to have another drainage without delivery as it would leave too many risks with the placenta. 


At 36 weeks it was time for Olivia to come out; to give her the best possible chances the doctors needed to schedule a double pleural drainage pre-delivery followed directly by an emergency c section. The hope was that with the least amount of fluid present at birth then she would breath on her own. With the knowledge that she would be critically ill once she was born none of this could be scheduled without an empty cot in the NICU. We had 3 days in Birmingham waiting for the news that we could come in for delivery. 


The pre-drainage went well where they took 110ml off one lung and 70ml off the other. Olivia struggled to breath as soon as she was born and was immediately put on a ventilator and whisked off to the NICU. In the Birmingham NICU the further down the corridor you are the higher the level of care that’s needed, Olivia was in the furthest possible room. She was a giant baby weighing 7lb 2oz compared to all the micro preemies in her room, but you could see she was very swollen from all the fluid. After a failed and accidental extubation (Olivia was already showing signs of being feisty pulling it out herself) Olivia was given an x ray which showed the lung cavities nearly completely full of fluid. At this point she was highly sedated with morphine and on 2 type of antibiotics for infection, and it was decided to put chest drains in. Firstly just in one side but it was soon apparent she needed one on each side. 


Once they tested the fluid they confirmed her condition to be something pretty rare, Congenital Chylothorax (the accumulation of chyle in the pleural space). It was presumably caused by a dis-function of the lymphatic ducts on the lung cavity, but to this day we still don’t know what caused it. Chyle is formed as part of the digestion of fat, so to treat Olivia she needed to stop creating this fluid in hope that the lymphatic duct would repair itself. All feeds were stopped, and Olivia was put on “starvation”. After a week on the ventilator, double chest drains, IVs and tubes in both hands, feet and belly button, a long line (a wire from her foot all the way to her heart giving her vital nutrition) and with her weight dropping down to 5lb 9oz Olivia was looking very delicate. It wasn't until day 7 that I got my first cuddle with her and day 9 for Haydn as she then became very jaundice and had to spent a few days under the blue lamp. 


Once the chest drains slowed down signs of improvement were showing and at 1 week old she came off the ventilator and I got my first cuddle. The drains had to stay until the fluid flow had significantly reduced and then continued to stop once milk feeds commenced. Olivia was given a special milk called Monogen and started on feeds which were only 5ml. Each day the feeds increased and thankfully the fluid never returned. Olivia helped the doctors move her treatment forwards by pulling out one of the chest drains, it was then decided that it was good time to remove both. The last bit was just patience as Olivia had been so sedated and her body was recovering from all the trauma. She was very dosey and had no strength to feed herself, it took 3 weeks to get her feeding on a bottle without falling asleep and rather than being tube fed. She was finally able to come home on her due date. 


It is safe to say that on many occasions if Olivia hadn’t been in the amazing hands of the Specialist Doctors and Nurses at Birmingham Womens Hosptial she would not be at home with us today. Coming from the small city of Hereford we are so lucky to be in the catchment of this incredible centre. There is no night and day on the unit as every moment is crucial as babies conditions change so quickly. Our time in the NICU was very short in comparison to some babies journeys but will stay with us forever and we will be eternally grateful for everything they did for Olivia. 


I especially struggled with the tough time we had been through. Not many people leave the hospital with a baby feeling so disconnected, as soon as I found out there was a problem in my pregnancy I prepared myself for the worst and it took me longer to adjust to actually bringing Olivia home and believing she was here to stay. So planning and starting training for this challenge has given me a focus and the drive to do something good out of this experience and has got me through. That is why we are now asking you to help us raise as much money as possible and the reason behind this crazy challenge.



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