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Help keep #teamBella together

£6,605 of £1,000 goal

Raised by 260 people in 1 month
Created July 2, 2019
Bella (8months) has congenital hydrocephalus and aqueductal stenosis which after a failed endoscopic third ventriculostomy required a VP shunt which has had to be revised a few times already. She has intractable epilepsy, congenital bilateral cataracts, bilateral moderate hearing loss with hearing aids, intracranial calcification, Gastro-oesophageal reflux disorder, constipation and a small ventricular septal defect as well as evolving cerebral palsy...which means that helping Bella be the best she can be is going to take A LOT of patience and support. Both medically and financially.

Right now our little family's main concern is being able to be there for one another at the hospital without worrying that there will be added financial strain. With my maternity leave ending and Steven being self employed when we are both in Glasgow there's no money coming in to keep a roof over our heads never mind funding the specialist equipment that Bella is already needing.

We will have to get adapted car seats, buggies, beds quite possibly hoists and wheelchairs as well as sensory toys and help in order to let her be able to communicate with us. Schools, medical treatment and housing are also future concerns of ours. Our world has been turned upside down and the future for Bella's life is very uncertain. We don't know what caused this and there hasn't been a specific syndrome identified which means we really don't know how long we have with our beautiful girl.

Neither Steven or I are very good at asking for help. There have been a lot of friends offering encouragement and support saying if there's anything they can do let them know. Well guys, unfortunately as Bella has specific medical needs I can't just ask one of you to take Bella for an hour or two whilst I go shopping or for a much needed sleep instead what you can do is keep our family together by donating a little of your hard earned money to make sure we can be here to support our girl. We really appreciate all the lovely messages and prayers from each and every one of you. If you can't afford to donate even a couple of pound please know that every thought of well being is greatly welcomed and we will love you all anyway.

 Love from #TeamBella   thank you!
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Afternoon Stargazers,

It never rains but it pours in Glasgow!!!!

Well it's been an interesting couple of weeks...

I can't thank all you park runners enough for the amazing turn out and amount raised to help our family. From the pictures there was a lot of people that we didn't know. I have mixed emotions on this one. I'm so happy people are reading our girls story and we are raising awareness not only to help us but hopefully help other people too. Epilepsy and Hydrocephalus aren't spoken about enough and like other invisible illnesses it is easy to forget that someone can look 'normal' or 'ok' on the outside but be in a world of pain on the inside. Basically it's reminded us to be kind as you have no idea what anyone is dealing with on the inside and we all need a little TLC at times. With raising awareness and telling you what is going on I hope it makes you stop and think about this too. You have definitely shown us care and compassion so thank you once again.

Bella was REALLY sick the day of the run. She wasn't coping with her feeds and was uncomfortable as the trapped wind was obviously excruciating for her. The bug we think Bella had she then passed to her daddy who passed it to Lori (god knows how I missed it) this meant I was here with Bella last week myself from Sunday night-thursday evening. Wow that was an exhausting time as she's been so up and down with the feeding and being so uncomfortable. The last two weeks she has lost a lot of weight. The worst day was Tuesday into Wednesday where she wasn't keeping anything down. We tried so much, from feeding over the pump at a slower rate, a faster rate, manually syringing the feed into her with breaks in-between. We tried half feed with dioralyte (dioralyte is basically water with added salts and vitamins to try to make sure you don't get dehydrated) that didn't work, we tried continuous dioralyte by itself. She retched so hard Wednesday evening that she vomited blood. The doctors have been called through the night almost every night this week because she was so sick but as she's on almost everything she can be to help with reflux, constipation, pain relief, seizures etc it meant they ran out of options to help her, so they weren't able to do anything. They tried to cannulate her. She got one in that lasted 20minutes and that tissued so bad Steven said she looked like popeye. There was 3 other doctors that also had a look but they didn't want to try so they sent an anaesthetist as that's a big part of their job and even he tried for an hour poking and prodding and bruising her to no avail. I'm so glad I wasn't there for that. So there wasn't even the IV fluids option so it was vital we found a way to feed her.

Thankfully she has started to take feeds a bit better and is keeping them. It's horrible to worry your child is going to starve to death and you have no control. Sounds dramatic but she was progressively getting worse over a two week spell and is the first time despite all the ops she was losing weight. That's the one thing we have been able to keep up despite feeding difficulties, surgeries, lots of marathon running type seizure activity. We have still helped her to grow. So this has been tough.

There has been reasons that may have affected her. She's had various tests done; nasal and throat swabs, urine and faecal samples taken and retaken, a renal ultrasound and a barium contrast study. She had a bladder infection, she has started to cut her first tooth and we found out today she has a thrush infection in her throat. Sounds like simple things, right? Well if they were on their own it can throw anyone off kilter but because of her already difficult conditions I'm sure this is why she has been so ill. The bladder infection has been treated and we are awaiting results from a more recent urine sample to see if it has definitely cleared. Her kidneys and bladder looked good on the ultrasound so at least there's no damage from that.

There has been lots of chats re how we feed Bella. An NG (nasogastric) tube isn't a good long term solution as it is uncomfortable. It dangles at the back of your throat and every time you cough or swallow or breathe it moves and that just can't be comfortable. So she's looking at getting a gastrostomy. Probably a peg. A Peg is a tube that comes out the abdominal wall from the stomach so feed and meds can be administered avoiding the esophagus. Which will help Bella as she's still often too sick or sleepy to oral feed. This shouldn't stop us from reintroducing oral feeds IF she's well enough in the future and it can even be taken out if it is no longer required (I think I'm living in a dream land with that but I will try everything to make Bella's existence a more "normal" and less medicated life.) They have said to us they will hold off on introducing the ketogenic diet until after this surgery which makes sense. She's been too ill to change feeds as this can upset her tummy even more so I'm happy with that.

We are talking about getting a break to Robin House with CHAS which would be amazing. It will be beneficial to get time away from the hospital for a bit and see if she can be well enough to go home for a bit.

Thank you to everyone who went to the body shop party/ placed an order online on Wednesday with Tracy, to her helpers and willing demonstrators. It looks like you all had a proper giggle. I'm yet to hear how this did but it definitely looked like a lot of fun.

Right! I've babbled on long enough. Please feel free to message on Bella's official teamBella page if you have any fundraising ideas or ways in which you would like to support us as our journey is still ongoing and will be 2months that we will have been away from home. We still have our bills and hospital life is expensive which is a nightmare when we just don't have any money coming in at all. Please keep sharing and liking, spreading the word of Bella's condition and awareness for Hydrocephalus and Epilepsy is really important to us too so if people can't donate you can still help us meet that goal. Thank you all for your continued kindness.

Lots of love #teamBella
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Morning troops,

I hope you have your running shoes at the ready...even if they're not being used to run, I know mines dont. I just wanted to wish you all luck I hope you smash it for #teamBella. So sorry we can't be there but we hope you all have fun on the run and have enough time to enjoy a tea and a cake at Kirkcaldy bowling club afterwards.

Bella turned 9months old on Wednesday which she celebrated by getting a tummy bug, which meant vomitting and yep you guessed it more seizures. Problem is we didn't know it was a tummy bug and these are normally her symptoms of her shunt is blocked so emergency CT scan on Thursday morning, followed by bloods to check infection markers.

I'd decided last week that I was going to try to get home at some point this week as I haven't been home since we got here. So I went Wednesday night, despite the vomiting and seizure increase, I went. I left Steven to deal with the plethora of seizures and in the mornin when he said she was getting taken for CT scan and to fast her in case it was more serious and she needed surgery I freaked. My heart was in my throat and the adrenaline was pumping. What if the shunt was infected? What if she needed surgery? What if her surgeon wouldn't do it? What if it's just the meds change? What if it's because the valve pressure was just adjusted?

What if we get it wrong?

Her CT scan was ok, her bloods came back fine, and by Thursday afternoon she had perked up a bit. So we can breathe for a second again.

Thursday evening she was a different baby. Three week we waited for that beautiful smiles and giggles. All the worries of the day forgotten as she showed us she is still fighting.

My warrior, my hero, my star!



It's sooo much harder to keep you #stargazers up to date on a daily basis now that Bella is more active so I hope you have enjoyed this installment. Please feel free to follow our teamBella page on facebook. Your love and support means the world to us so thank you once again for donating and all your kind words of encouragement.

Lot of love #teamBella x
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Ted's journey

I made it out of the shops attached to a beautiful outfit for a tiny girl. The lovely lady that I now know is affectionately known as Granny Fee had rescued me. Yayyyy

I was so excited to meet the little girl as I had heard that she was something very special. You see she was living at the hospital soooo it was my mission to be her friend and watch over little Bella EVERY day. Even when mummy and daddy wasn't allowed to stay. That way Bella would never be alone.

Sometimes we just lie in bed all day because little Bella is verrrryyyyy sleepy on her medicine and I'm not sure that she even knows I'm there half the time. Daddy makes sure she knows I'm there by giving me a funny voice. He does the same voice for me and Elmo. Mummy likes this a lot and laughs and laughs with daddy as he makes me sing and dance . Mummy puts me in Bella's arms. Lori even comes and tucks me in sometimes. Granny fee even made me a tiny diaper so I didn't wet the bed ‍♀️.

Like I said my mission is to be with princess Bella ALWAYS, this means I have to go into some scary rooms with her too. On operation day all the personal items get taken off Bella's bed ....except a blanket aaaaaannnddd ME .

It was after princess Bella's second surgery that mummy and daddy realised JUST how perfect I am. You see I'm a little broken too. I have had to be stitched up and mended. This includes a scar on the front of my head and an abdominal one too. IN THE SAME PLACE as Bella's no less!!!!

I go everywhere with Bella but most importantly I am on the checklist for hospital stays. I have been to EVERY operation and I even sometimes get my own name band as the nurses want to make sure that I don't get lost.

I am a reminder that you can be a little tatty or broken and still cute and so well loved ... Just like my friend Bella Star.

Goodnight from us at the hospital #teamTeddyruxpin. ...

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Evening Stargazers,

I hope you have some lovely plans this weekend. It's my best mates hen night tomorrow and I just can't leave my girl. I want to wish you the most fabulous hen doo. I'm gutted to be missing it I love you. Enjoy ladies.

Emotionally I've been struggling the last couple of days. It's exhausting being at the hospital. I actually feel my old bones protesting too but mainly I just wish Bella didn't have to go through any of this.

The neurosurgeons are happy with her progress and so we just need to wait to do a scan to make sure the pressure setting is correct on her shunt.

Neurology are keen to start the ketogenic diet with her. They don't know why it works but sometimes it can help to stop seizures. Bella's epilepsy is refractory meaning it occurs at lots of different areas of her brain which is why it's harder to treat so this is unlikely going to stop them but it may reduce then dramatically. She has had A LOT less seizures anyway and we are working on reducing drugs. The drugs are now sending her so sleepy it's affecting her heart rate and oxygen levels but not to a degree anyone is too concerned at the moment, but they're not her mum. If we come down too quickly on the drugs it will send her body into withdrawal so they're doing that slowly. Other than that though things are looking positive.

There's been a couple of mentions of the 'H' word (shhh don't say home in front of Bella) ... Which from experience you have to take with a pinch of salt. There are things that need to be put in place before that can happen so we shall see but we will definitely be here at least another week.

That's what's messed with our heads though. How can you go from basically preparing someone for the worst. Literally using the words palliative care to oh we'll have to look at getting you home soon. I mean I shouldn't complain I want our girl where she belongs but it's some rollercoaster. The meds aren't sorted. We need the rescue plan tested. I need to know she's safe. I have always been one to over think everything so I'm surprised at how well I am keeping it together. I'm surprised Steven hasn't ran away yet either. It's very claustrophobic being here and you start to get a bit institutionalised so the thought of home is very daunting too.

breathe.

I love that our baby girl has so much love but the private part of me is petrified that so many people know us but we don't know them.

Our Star was named very aptly and is shining like the star she is. I hope her strength brings you joy and courage like it does me and we can all realise just how precious and fragile you can be but still keep up the fight that's why I feel her story has to be heard.

Thank you for your support. Please keep sharing Bella's story and let her touch the lives of as many people as she can because if she can bring us all a little light and inspiration the girl is already accomplishing more than most do in their lifetime.

Lots of love #teamBella
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£6,605 of £1,000 goal

Raised by 260 people in 1 month
Created July 2, 2019
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