Cardiacwarrior_ivydelilah

06/07/2024

Yesterday we went to our local hospital for an appointment regarding the constant coughing & chest infections Ivy keeps having. As always she was an absolute super star ⭐️ Ivy had a chest X-ray and has will be having a vaccination booster to try and protect her against chest infections 🤞🏼 They will be reviewing the X-ray and are doing some other investigations into why she keeps getting them. Ivy has since woken up this morning really poorly again 😣 never ending for her.
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Whilst we were there we were also given the results to her 24hour ECG she had when she was last admitted into hospital. We have been chasing this for a while now and it’s very unclear why we hadn’t received these results sooner. Unfortunately the ECG did show two unusual rhythms, one more serious than the other. We are now waiting for our cardiologist to contact us on what to do next. This could explain the “bumpy heart” she’s feeling 💔 The gutting feeling we felt whilst being told was awful.

14/05/2024

⭐️ GOOD NEWS ⭐️ after what happened last week, today we had a full check at Alder hey & thankfully her echo scan has shown no changes and is no different to the last one 🙏🏼😭 the relief we all feel is unreal!!!
We are thinking it was more to do with the infection she had/has had a lot of pressure on her heart and caused her to have that episode but it has done no long term damage to her heart or changed her outcome at all 💝 They can’t reassure us it won’t happen again and they still want a follow up regarding what happened but the scan today has shown Ivys heart is fighting as strong as ever! 💪🏼 honestly this girl is one very tough cookie! 💝💝 Infections hit our cardiac children so much harder & she’s had this one for so long now so I’m not surprised it took it’s toll on her. It’s time to try get back on track now having fun and enjoying life again ❤️💗

06/05/2024

Yesterday was something we never want to experience again - Ivy has had a cough for a month now initially she was being treated with antibiotics for a chest infection & tonsillitis. After the course had finished she still had the cough so I called the dr for advice and they wanted to see her again, her heart rate was really high so they called the hospital for advice and they decided to put her on another 7 day course of antibiotics. Yesterday was her 4th day on this course and it was just a normal day playing in Nanny and popops garden, still coughing but happy enough. We put Ivy in the car to go home and as we started driving she suddenly started crying saying her heart was bumpy, hitting her chest and pulling at her skin. When we got her out the car she was so agitated, crying in pain didn’t want anyone to touch her, rolling around on the floor screaming her heart was hurting 😭💔 this was just awful to see so we called an ambulance that thankfully was with us within minutes as Ivy then turned really pale, her eyes were all sunken in, her skin went all blotchy, her head went floppy and she was unresponsive. We were blue lighted to hospital and eventually after half an hour (which felt like forever) and a lot of encouragement Ivy woke up!
She’s was admitted last night in HDU and has been put on IV antibiotics as well as being on the cardiac machines. Over night her heart rate has gone from being very high to very low! So we are just waiting for some advice from cardiac team at alder hey and she will be staying here tonight for close monitoring, antibiotics and to try and get to the bottom of what happened yesterday!
Our girl is just unbelievable and it sat up telling all the drs and nurses what happened yesterday and how it felt 🥹 she is so clever and SO STRONG!! 💝
Yesterday was so scary 💔

09/03/2024

09/03/2024

Little doctors and nurses appeared this morning at Tom's Tots. They were all helping our poorly Teddy bears. We certainly have some very lovely, kind and caring little Tots!

09/03/2024

💖 HAPPY HEART DAY BABY GIRL 💖 2 years ago today since your first open heart surgery 💝 Every day you show us how strong you are! We are so, so proud of you & how much you have over come is just amazing ❤️

19/02/2024

On Thursday Ivy had her epilepsy review after her EEG at Alder Hey. Unfortunately we didn’t get any results that we had hoped for and Ivy will now need to go for a sleep study EEG back at Alder Hey in two weeks. Hopefully we will have more answers after this 🤞🏼. It was a pretty tough appointment as we had to go over everything she has been through like life support, induced comas, surgeries, low saturation etc. As always Ivy was a super star ⭐️ 💖

24/01/2024

Our super star 🌟 went for her epilepsy appointment today with daddy as mummy is poorly atm. As always she impressed everyone and was a little angel 💖 We should have some answers in the next week or so 🤞🏼💖💝

12/12/2023

Todays cardiac review at Alder Hey. First of all Ivy was unbelievably amazing throughout it all ❤️ Today was the first appointment she has attended and not been distressed, scared or cried. She laughed, danced & had lots of chats with drs and nurses 🥰

Overall it was a good review with no major changes. The leak in her right valve has possibly increased 😏This could be due to Ivy growing, the person scanning measuring differently or it could have actually increased. This will be monitored closely hoping it doesn’t go up anymore 🤞🏼 any little knock really does feeling gutting though😩 But it’s not the worst and Ivys still doing amazing and impressed everyone so much!!! 💝

Ivy has also been having absent episodes since her open heart surgeries. This has been brought up with our local paediatrician a while back and we have been monitoring this for now. Today it was confirmed it was nothing to do with her heart function. It could be to do with being on ventilation and suffering with low oxygen levels/pressure on her lungs. She will now be referred locally to see if she is suffering from absent seizures. Again this is something that is completely being managed at home and sometimes she can go weeks without one but then have loads in a day. It’s not effecting her progress at all though.
This girl lets nothing get in her way 🌟 Super proud parents and big sis as always 💖

03/11/2023

When your amazing, clever & kind big sister gets reader of the month in school and picks her reward for you 😭❤️

17/10/2023

Appreciation for the beautiful cheeks and pretty outfits 💝💙🤎

28/09/2023

Happy 2nd birthday to our beautiful, clever, funny, caring Ivy Delilah 💖💖 This girl has been stronger than I could have ever imagined. We are unbelievably proud of her every single day 💝 We have yet to meet a one/two year old that loves to party as much as her 😂 so we know she is going to absolutely love all her presents and tea party today 🥰🎈Keep being the perfectly, amazing super star you are Ivy. We love you so so much ❤️❤️