Ivy

 So to bring you up to date, Ivy is now 8! Feels like she should be 18 with all the trials and tribulations we have all endured.

She had further open heart surgery in 2015, and hopefully the conduit replaced will last many years before needing to be replaced again. Needless to say taking a 3 year old to theatre, was very different to taking Ivy when she was a very ill baby.  The fear and trepidation of losing her was hugely elevated which I wouldn’t have thought possible. The need to stay calm and not show fear for Ivy's sake was torture but there was no other choice, she couldn’t know the fear her mummy and daddy had. The 8 hour waiting game was hell. That call to say all was well and we could see her seemed to take forever. We stuck to the same regime we did last time, call it superstitious if you like, but she came back safe last time so we felt we needed to do things the same again.

Ivy still has her trachy, which we have all become accustomed to. Whilst she has the trachy she is safe, her airway can be managed it’s a strange relationship that develops overtime. We have learnt to love the trachy.  She remains requiring ventilation when she is poorly. It's hard to see her flat on her back requiring the vent, it’s the slap in the face of reality that rears its head from time to time.  

Her T-cells have increased and her immunity, although still slightly low is not what it once was. Her one kidney is functioning well and we now have 5 year check-ups with that.

As Ivy has grown the focus has become less about medical interventions and more about the psychological implications, this as a family we struggle with. As Ivy has grown, she has become aware she is different and on a good day there is no issue, but some days she is so frustrated and sad, she tries to pull out her trachy, she bites and picks her skin until it bleeds and there is no reasoning with her. This breaks our hearts. She has psychological help as do I from the long term ventilation team at Leicester who remain an extended part of our family.

Ivy is repeating year 3 at main stream school, Covid has played a part in that and also Ivy's ability to progress at the same speed as others. Like everything else Ivy does she does it in her own time. We have come to accept that Ivy will always struggle with the things we take for granted. This doesn't mean it's okay it just means we have to find other ways to help her.

Ivy has an amazing support team surrounding her, she has two fabulous 1:1's she has a lovely bunch of friends and a school that does all it can to help her achieve the best she can. This hasn’t come without testing the patients of a saint, but we got there in the end and that's what counts. It is hard to stay calm, when you feel yourself repeating things over and over and striving to get the best for your child, but there is no other option.

 Ivy has the most adorable personality; she has the strength of a lion, an unbelievable determination to achieve whatever she sets her heart on. She is to be admired. 

The future remains a mystery as it does for all of us to some degree, with 3 siblings that adore Ivy we know she will always have one of them looking out for her. Ivy continues to amaze and touch those she meets. We couldn’t be more proud of the little girl she has become, and the young lady that is developing.

 March 2021

 2014

We were over the moon in 2011 when we discovered we were expecting our second child.  As we approached the last week of our pregnancy we received the bombshell that our little girl appeared to have abnormalities.  A test confirmed that Ivy had Di-George Syndrome – a condition we had never heard of – along with that came the devastating news that she had a rare and complex cardiac problem which would see her require open heart surgery throughout her life.  

Three weeks after receiving the news I was induced.  We welcomed the most beautiful and perfect looking baby into the world on 6th August 2012. We, along with the medics, were amazed at how well she seemed to be coping despite her internal abnormalities.  We took her home 12 days later.

 Little did we know of what was to come. At 3 months Ivy caught a cold just like other children at that time of year, but to a child like Ivy who is immunosuppressed it knocked her for six. She was urgently admitted to hospital and put on life-support.Ivy failed to come off ventilation and after many weeks of emotional highs and lows, we were told the bronchomalacia she had was extremely severe - her pulmonary arteries were compressing her airways. Ivy was very sick in severe heart failure. Our beautiful baby had become unrecognizable.

The day after Boxing Day she underwent open-heart surgery.  This was the longest day of our lives. After 9 hours we received the call that she was successfully out of theatre. A few weeks later she underwent more investigations as despite several attempts she was still unable to breathe alone. The damage her heart had caused to her airways meant she needed long term ventilation and a tracheostomy. Hopefully this would stop the episodes of her going blue – well, almost black - as she was revived daily.  We were told to expect the worst on several occasions

Since then she has had three more surgeries - a repair to her diaphragm, her tracheostomy and a gastrostomy.  . In July 2013, after 9 months on intensive care, Ivy finally came home. We were over the moon. We were always determined she would be home for her 1st birthday - that was our focus and we never gave up on it.  

The months in hospital saw our stress levels go through the roof; the constant daily 3 hour plus commute, trying to maintain some normality for our eldest daughter, trying not to drown in worry and fear, it was almost unbearable at times.

 Despite all this, Ivy continues to amaze the doctors with her strength and determination to survive. Her battle is far from over, we don't know what the future will hold, nor do we want to think about it, but some days I can't help myself and I cry.  We hope Ivy will grow old but sadly she may not.  We are full of pride for our little Ives. She has changed our lives in so many ways – she puts life into perspective.   

Today, thankfully, we are delighted that Ivy is making remarkable progress. She is spending time off the ventilator, is running around, beginning to sign, and remained in relatively good health despite her immunity issues. Her one kidney is functioning well and her cardiologist keeps a close eye on her heart.  We just have to watch and wait for the next open heart surgery. Each surgery brings new fears for Ivy and us, it gets harder that’s for sure.

Ivy is the most adorable, cheeky, spirited little girl.  It’s her grit and determination that sees her still with us today, along with some of the best doctors and surgeons we could ask for.