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Ivy-mai’s tofs/oa tracheomalacia journey, Cardiff (2025)

03/03/2025

After 6 months of many meetings, training, 1to1 and many more things our girl has finally started Cylch🥹 I can’t believe my little fighter made it to school! Many days and nights we sat there dreaming of this day! will it come fast or would it ever come at all! You made it this far but baby girl you did it🥰

mummy has had many messages off all your teams today they are all just as emotional and cannot believe you have DONE IT! My big girl! her first day ever without mummy😫 of corse I have so much worry and anxiety but I don’t care as long as she gets to live a normal life!💕 I have good trust with all the staff at the school and I cannot thank them enough for all they have done! I know myself it’s not easy taking it all in😂💕

She wasn’t bothered one bit and told me to go away at the gates😂 that’s one way to thank me for the last 2.5 years babes😅 she was so excited to dress up as a Welsh lady for school today so dread tomorrow🤣 I’m so emotional right now my baby girl😫💕

💕Kidney surgery and bronchostomy updates to follow💕

19/12/2024

The big secret is finally out!We were filming with BBC Wales the other day on what it’s like to have a child in hospital over Christmas! We hope that you all seen it but if not here is us on BBC Wales! We cannot thank Ronald McDonald House Cardiff enough for everything they do for us! From being there for us to providing amazing seasonal experiences for children like Ivy-mai💕 we are so lucky to be able to tell Ivy-mai’s story something I’ve been wanting to do for so long! You need to raise awareness of TOFS/OA and the impact it has!for the first time ever I generally am lost words on what to say but I hope this can break down how truly amazing Ronald Mcdonalds are!! 💕

17/12/2024

💕Update on Ivy-mai💕

Ivy-mai Kidney stone removal was unfortunately cancelled for 6 weeks( nhs guidelines) due to her being poorly with a nasty virus. Currently back on her stronger meds for a few days!

It’s bitter sweet, we get to have Christmas at home as a family but we also now have 6 weeks of worry! We have now got to replan our whole Christmas and our tree is currently now on its way up!! Better late than never🎄

The worry we now carry is How much more damage will this growing stone cause in 6 weeks! Will she make it to the next op day or will another bad infection happen! Will her kidney be able to withstand everything it may face? We have so much worry!
The machine should be able to remain within the hospital but we don’t know!
They weren’t 100% with her going down after finding out Ivy had early stages of pneumonia on her last admission!!
They wouldn’t ever risk Ivy-mai, they know she struggles after each surgery so with this one we need her 1000%!
All same protocols will be put in place HDU booking, Last on list and risks will now be slightly higher!
We will have an appointment with her kidney surgeon after Christmas in hope we can now get her contrast die study done on her kidney before this surgery like they wanted! We may have change of plans now we don’t know!
I’m so gutted for her! Another painful 6 weeks! Another 6 weeks of watching her suffer!! But I’m so proud of her each and everyday fighting one thing after another!
Currently managing Ivy-mai at home but hospital are aware of her bad chest!

So for now! we enjoy Christmas,New Year and we prepare for the new year with not the best start but a busy start!
Thank you to everyone who sent well wishes yesterday! Just copy and paste them again in 6 weeks time🤣🤣💕

💕Ivy-mai’s fight always!💕

26/11/2024

Yesterday we sat down with the Kidney surgeons at Noah’s ark children hospital.
They started off by telling me they will be hoping to repeat ivy-Mai’s bladder scan in spring to see if it remains the same or to see if her kidney was causing most of the issues. Depending on the results, further treatment will be needed.
I then went on to sign all paperwork for her MRI SCAN to be done for her VACTERL diagnosis.

Ok so here’s where my head fell off big time!
They went on to tell me that Ivy-mai’s right kidney has some damage and scaring. They will be doing a contrast die study on her kidney so they can see how much damage and scaring there is. They hope to get this done before her surgery but if not it’s ok to be done after!
They of course didn’t want to have to remove the stone but because she’s had two major infections, sepsis twice and many UTIs in just a year they have no choice but too.
They have two surgical options one being sound waves and the second being a laser. They hope to do the sound wave one more as there’s less damage risks. They have to order the machine in so on the 16th of December Ivy-mai will be undergoing one of maybe 3/4 surgeries to blast this stone! She is one of the youngest children to use this machine designed only for adults! Of course they have to make sure they are 1000% happy with their positioning so she may be under for a while!
The stone is now 9mm and has grown since her last admission. They are unsure whether this will work and could take many different attempts during the next few months. It could potentially have to be swapped to the laser! they don’t know!
There main concerns are Ivy-mai can’t afford anymore damage or scaring so both surgeries are risky.
They also went on to tell me that the little glass like shards once blasted can causes infections and injuries so because of this she will be booked into HDU after. We may experience some trouble after but hoping she’s not needing to go up🙏🏼
In the first 24h after surgery close monitoring will have to be done on Ivy-mai because her urethra is very narrow and there is risk of blockage after, In that case Ivy-mai will be rushed down to theatre and will have to have key hole to clear it out.
The other risks list goes on.
We are hoping recovery time isn’t to long for Ivy-mai but it’s all down to how her body fights. We all know how strong her tiny little body is but she puts up the biggest fights known to anyone!
My girl is strong and she is tough!🙏🏼
I know she’ll be home in time for Christmas just like this time 2022 when she had her major surgery to help save her life! And we can’t forget nicu also!!

The worry I have right now is horrid but I truly believe that my girl is some miracle girl! She has gone through so much in her 2years of life and I’m honestly the proudest mother to walk this earth🥰
Know matter what life throws at you baby girl mummy, daddy, willow and your whole family will be behind you cheering you on! Not to forget every single person we meet or know of cheering you on too💕
I know you’ve got this girl💕
This Christmas will be the best one yet I promise you🎄🎅🏻🤶🏼

💕Ivy-Mai’s fight always💕

24/11/2024

💕Long overdue update on Ivy-mai💕

Ivy-mai was discharged on Monday from Cardiff Noahs Ark after managing a night off oxygen on top of her high flow! There was no known cause for ivy-mai’s 6 day admission no infections or viruses! Her right lung has always been her bad lung as it was the lung that was like her stomach during pregnancy! They believe that because Ivy-mai had to change her antibiotics to protect her kidney this was the reason her lung went bad💔 they now have to decide whether we stick to the one we are on and pray her lung stays ok for now or do we go back into that medication and risk another bad kidney infection🥴 personally I would rather protect her lung as you can only live with two! But that isn’t for me to decide unfortunately! they started her on a stronger medication to help fight what ever it was quickly!
Unfortunately, the bronchoscope We was hoping for Thursday got cancelled and rescheduled🥺 we have been pushing for this for over two years, but hopefully will not be long until it is done! This will give a lot of answers! Has her Malacia gotten better? Salts will be able to work off this as well as Respiratory.

Her jej we found the balloon had a small leak so we didn’t remain in for it to be changed. We then was told to bring Ivy-mai into the grange for her jej to be changed Friday! Due to the sedation Ivy-mai requires we was told to come in at 8am and then they rushed her down sooner as Ivy-mai woke up we requiring top up of gas as well as the 5ml sedation. I’ve never known a child to fight sedation the way Ivy-mai does! She was still running around while’s her eyes rolled🤣
When Ivy-Mai woke up her blood pressure was extremely low so we kept in for a couple of hours for Montoning! After seeing the docs they asked if I was happy to take Ivy-mai home which I was! Most of the time being in the hospital causes so much ptsd for Ivy-mai it’s best we go home! That’s why we was given all equipment we have!

Tomorrow is a big day for Ivy-mai. We sit down with her surgeon to discuss how there gonna remove this kidney stone! Where that will be! And what her risks are! Just saying I’m absolutely pooing myself is an understatement! Because Ivy-mai’s kidney is at higher risk during any surgery and can end in a disaster! Keep fighting strong My Baby Girl💕
Hopefully this will all be over in a couple years and you’ll be living the best life ever without any hospital admissions 🙏🏼💜

💕Ivy-mai’s fight always💕

15/11/2024

Unfortunately Ivy-mai has been back at Noah’s ark for the last 3 days due to low sats and chocking on secretions 4 days ago in her sleep. Me and Kory had to help her with suction and oxygen and we knew something wasn’t right!!!

Ivy-mai is currently requiring oxygen during the day the most being 4L to help pick her back up and 1L ontop of high flow at night. Her pressures have also been lifted from 16L to 20L.
Chest x-ray was done on admission as her respiratory consultant could hear low air entry into the right lung! Scans came back not as bad as we thought but today they listened and said it’s increasing slightly😫

Last night Ivy-mai was put onto cardiac monitoring due to her heart rate being so low (bradycardia) last night she was lowest 55bpm and wouldn’t come over 100bpm! This morning then Ivy-mai was the opposite she was tachycardia with it being 170+bpm!! With her having a heart murmur and the holes at birth we need to make sure all is good! This has everyone worried and we are STILL waiting on cardiac to come😣

Ivy-Mai’s jej also started leaking and X-ray was done today as she’s been 3 days on just iv fluids as we can’t use it without knowing if it’s ok! They said it’s hasn’t flipped but in an awkward position. They thought that the tubing of the wire had come away but thankfully it’s just the balloon! We are able to feed Ivy-mai now until Monday where they will fit another under sedation (because she’s a wriggler and not a nice thing to go through)!

The thing that’s made us all so worried the most is the fact her bloods are normal and no infections or viruses! So what the hell is going on😞 hopefully get some answers soon!

💕Ivy-Mai’s fight always💕

05/10/2024

Our girl was discharged home with more medication to help her kidney as we was lucky enough to catch it before it affected her bloods🙏🏼 they sent off urine samples and I’m to ring Monday for results! Renal now have a plan for surgery as they know this is causing more issues and can even delay surgery😞 I’m super proud of you baba girl! Nothing ever bothers you and you take it like a champ!!

Also this week marked 2 years since Ivy-mai ended up back in hospital. The start of the crazy two year journey we are on! After leaving nicu we never expected your life to end up the way it is🥺 we knew you would have issues but never thought you would be the complex side of Tofs/oa and to even be assessed for more🥺 today it was two year that we almost lost you on owl ward, a day that truly has stuck with me and Kory for as long as I can remember and live😞 watching them nurses, doctors and resus bring you back was probably a feeling I can never explain to anyone😫 the ptsd we all have from that day is crazy from the smallest beep to even smells😞 but I cannot thank them enough for saving my girls life!! to think we could of lost you two years ago today makes me realise how strong and resilient you are gorgeous🥰 I wish I could change the life you was given baby girl💔 two crazy years but I wouldn’t change you for the world💕

03/10/2024

Update on Ivy-mai💕

Yesterday we had another appointment at UHW Noah’s ark for ivy-mai’s kidney and liver scan. Scans was ok! Stone was in the same place, no change in size, kidney isn’t swelling much and liver has no changes! The only issue she had was her urines smell and output.
I was told then to get a urine sample in CAU before we leave but due to the time and Ivy-Mai’s output being low we agreed to do it over night and take up to GP this morning. After couple hours my girl did a wee in the potty making it easier to get a sample! I’m so proud of my now BIG GIRL doing a we**ee on the potty!!!
The sample had viable blood and the dip came back positive for most issues. I called the kidney centre and we was told to bring Ivy-mai back in😞
Currently waiting on bloods to be took and another urine sample🥺 we could be home by tomorrow or another couple days stay💔

I feel so bad on my girl! I told them this would only be a matter of time. I said us going home isn’t going to do anything but make her worse. Her urine output has gone less which I’ve known since our last appointment, it smells and is dark! All the signs I was told to look out for yet she’s been like this since we left🤦🏽‍♀️

Keep fighting baba girl🥺 we are all behind you and I will fight every corner for you gorgeous💕

💕Ivy-mai’s fight always💕

27/09/2024

Update on Ivy-mai💕

Today we had one of many appointments regarding ivy-Mai’s kidneys, liver and bladder.
As we know they found out that her spinal cord has a couple of bones fused together so we are looking into weather her brain signals get sent to the right places correctly. We have a MRI booked in for this to be looked at in depth more as she could potentially have other medical conditions we are unaware of that goes along side Tofs/oa called VACTERL💔

She had the bladder scan and test done today. This is to see if her bladder works the way it should and if it empties fully.
They put a sensor in her nappy and sent us on our way until she did a wee and it bleeped. After 2 hours we finally got the results. They then went on to doing a scan of her bladder to see how much urine had exited.
Unfortunately it wasn’t the news we was hoping for. Ivy-Mai’s bladder doesn’t empty fully and only empties around 20% if that! Her sensor shown us that she doesn’t wee fully and mainly trickles when she goes🥺 The doctor told me that this could be why she is always getting UTI sepsis and the kidney stone.
The results are now being sent of to specialist that will get us in for more test as they believe she has a bladder condition and her nerves don’t get the full signal to go💔
Hopefully this can be done quickly and if so she can then go onto the right courses of treatment🤞🏼
it breaks my heart to think she could have more conditions that haven’t been picked up on or diagnosed😞 they had all the signs from nicu I just don’t understand😫 my poorly baba girl never catches a break ever it’s always one thing after another💔 I’m super proud of you gorgeous girl nothing ever stop you! I love you more than anything💕

💕Ivy-mai’s fight always💕

Ivy-mai’s tofs/oa tracheomalacia journey

03/03/2025

19/12/2024

17/12/2024

26/11/2024

24/11/2024

15/11/2024

05/10/2024

03/10/2024

27/09/2024

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