Heart Month

Definitely failed at blogging! My last post was May last year, before Harper's open heart surgery. When I started this blog I had full intentions of writing down her entire journey including before, during & after her surgery..but when it came down to it I just couldn't face writing it down. I just about managed to message family (and even then I'd missed people out) and post a few updates on the Facebook page.

I think my way of dealing with it all was to try and block out what I could, pretend it wasn't happening, so writing about it would have only made things harder. The 4 days we spent at Great Ormond Street seem like one big blur, probably not helped by the lack of sleep, which is almost impossible when you know your child is lying there on a ventilator.

With this Month being Heart Month I decided to take part in the CHD awareness photo challenge on Instagram & writing about Harper's condition & surgery has meant I've received a few messages from expectant heart mums wanting some advice. I remember being in that position and feeling really isolated as no one really understands unless you've been there. I remember constantly searching online for any information I could & finally coming across a heart mums blog. It really helped me to understand what I would be facing, and gave me hope that everything can be okay in the end. It was then that I decided to start my own, to try & help others as her blog had helped me.

Now that I've had questions about Harper's condition I feel I should continue with this blog as best I can, as it might just give somebody else that bit of hope.

Harper is now 19 months old, walking, talking & trying her best to keep up with her 3 year old brother. She's been ill a fair bit since her surgery last June..she is currently on antibiotics for a chest infection & tonsillitis, but she's as smiley as ever & isn't letting it bother her too much.

Surgery Update

Last Wednesday we took Harper to Great Ormond Street for her pre admission tests. They all went well and we were told that Harper's heart wasn't as complex as they first thought and they should be able to repair it in this one operation.

We had a chance to meet with the surgeon who explained what they planned to do and told us to expect surgery to last around 5 hours. We were given fasting times and told to bring Harper back to the ward at 11am the following day.

We stayed at Joe's Nan's that night as she lives in London and would be easier to get back to GOSH the next day. We woke Harper at 6am to try to get her to have something to eat as she wouldn't be allowed anything after half 6. By 8am we were in a cab travelling across London. I held back tears as I cuddled her feeling sick at the thought that I'd be handing her over to surgeons in just a few hours.

We arrived at the hospital at 9am and had planned to sort out our accommodation before taking Harper down to the ward. As we walked up to reception my phone rang..'I'm sorry but we have had to cancel Harper's surgery today..we no longer have a bed for her on intensive care'.

My first reaction was to cry, we were there in the hospital..I had prepared myself as much as I could that today she was going to have surgery. Now I'd have to go through all this again. 

Once I had time to let it sink in I realised just how lucky we are. Harper's surgery had been cancelled because babies and children had been rushed to GOSH for live saving surgery, hers was cancelled because she isn't a priority right now. Harper is living with her condition, she is almost a year old and has lived with Heterotaxy without any surgery. Something that's extremely rare. For that we have to be grateful. 

Harpers surgery is now going to be on the 25th of June, although it's only a few weeks away I'm able to push it to the back of my mind for now. Harper will be turning 1 on the 21st and we are going to make sure we make it as special as we can for her.

Open Heart Surgery

I haven't written a post in so long, partly because everything had been going so well there wasn't really much to write in update posts..but also because as her operation got closer I'm finding it more and more difficult to talk about it. 

We found out a couple of weeks ago that Harpers surgery will be the 21st of May, she will be exactly 11 months old. We will have to travel up to Great Ormond Street the day before for her pre assessment which we are told will last around 4 hours. We will get a chance to speak with the surgeon and have all our questions answered.

We don't know how long the operation is likely to take, how long her recovery time is expected to be or what exactly they are planning on doing with her heart. We have a rough idea as we know she needs to end up with two chambers at the top instead of her one large one but they've haven't yet explained how they will do it.

We have very kindly been given accommodation from the pre assessment day until Harper comes out of intensive care, when one of us can then stay on the ward with her. It means leaving Teddy which I'm really worrying about as he never stays away and when he has it hasn't been for more than a couple of nights. The last time he did was when Harper was in hospital at Christmas and he ended up really distressed. I'm praying that this time as he's a little older that he'll be okay. He'll be staying with my mum just a few stops away from GOSH.

I'm finding that I'm coping better by trying to forget about it and pretend it's not happening but the closer it's getting it's becoming harder to ignore. I've always been the one that's been fine to talk about Harper's condition and have thought I was strong in some ways as I've always seen the positives and have always known she would be okay. But now that we only have 2 weeks left I've become a wreck..the thought of what she's going to go through breaks my heart, I know we've been extremely lucky with Harper, Heterotaxy is so complex and affects every child differently..Harpers being on the 'better' end of the scale, but I can't help feeling so unlucky right now. We should be excited planning our little girls 1st Birthday, instead I'm finding myself praying that she's going to be okay. 

She is the happiest, most loving baby ever. My little fighter, I'm so proud to be her Mummy xXx

#ChdWeek

This week is CHD awareness week & after seeing this post on The Corbin Story's blog I wanted to use their photo a day challenge to write this post. Our journey is far from over, in fact this is only the beginning..but our story so far might just help another heart family and that's what I started this blog for.

The idea of the photo a day challenge was to post a photo, video or even a poem corresponding to the word for that day..

I've chosen to post mine here..

#Diagnosis

I was just 17 weeks pregnant when I found out there was something wrong with our baby's heart, but we wouldn't get a diagnosis until we were seen by Great Ormond Street a week later. Harper has Left Atrial Isomerism, or Heterotaxy as it's better known in other countries. It doesn't just affect her heart..but all her organs, causing them to be in the wrong place or an abnormal shape. It's extremely rare, something I've found really hard as there's no information about her condition online, but luckily I've met some mum's through Facebook who's children also have Heterotaxy.

#Surgery/Meds

Harper was originally supposed to have open heart surgery at 3 months old, but managed to close her VSD at birth so it had been postponed. It has now been booked for 4 months time and will take place at GOSH. She is currently taking 2 diuretic medications - Sprinolactone and Furosemide twice a day. She is also taking amoxicillin as she has picked up another virus..she is on the mend now though.

#Siblings 

Harper has a big brother, Teddy who is 2. He loves his sister loads and refers to her as his Princess. He is still too young to understand everything that goes on with Harper, which in a way I'm glad about but it also means we can't explain why we have to stay in hospital with her while he stays with family.

#Realisation

I consider ourselves to be very lucky with Harper, especially as we were told she might not breathe on her own and wouldn't have an immune system. To have been able to bring Harper home & lead a pretty normal life for the last 7 months is something I'm very grateful for. Sometimes you'd never know she had anything wrong with her, until something goes wrong..she gets ill or she stops gaining weight. She gets treated differently by doctors, who most of the time have no idea what to do with her, I've had to beg nurses not to turn her oxygen up when she had bronchiolitis because it was dangerous for her..because they didn't understand her condition.

It's then we realise that she isn't a normal baby..she's a heart baby and she will always be treated differently because of it.

#NewLife

My new life started the day Harper was born, the day I became a Heart Mum, the day Teddy became a big brother. Our family was now complete..we knew it was going to be tough, but we were as prepared as we could be.

#HeartMom

I suppose I should post a bit about myself here, but when I think of the words 'heart mum' I think of Gemma, mummy to Martha-Grace and who's blog got me through pregnancy. They have been through surgery more than once and it's post's like this that I need to be reading right now, these are more helpful than any leaflet GOSH can give me..real stories that give mums like me hope, that everything will be okay in the end. 

#HeartDad

Harper & Teddy's dad is Joe..who has amazed me over the last 7 months especially by running in The Royal Parks half marathon to raise money for GOSH. He is always positive when it comes to Harpers condition and always picks me up when I'm having a bad day. 

#TributeToYourWarrior

Our little girl amazes me everyday, she is one little fighter. She doesn't let Heterotaxy stop her doing anything and has reached every milestone that she should have by now. She always has a huge smile on her face, even when doctors are prodding and poking her and even when she's poorly. She is facing a tough time in the next few months, as are we...her open heart surgery in May.

The hardest thing any of us have ever..and probably will ever go through.

Wear It. Beat It. for British Heart Foundation

On Friday 6th February the British Heart Foundation are asking everyone to wear red and hold a red themed event to raise money to help their fight against heart disease.

Harper is doing her bit and was given this beautiful tutu set by Love Tutu's to try and raise awareness for the event. We will be donating the cost of this set straight to the British Heart Foundation.

It's not too late to do your bit..you can donate by texting RED to 70060 to give £3 and help fund life saving research. You can also donate via their website https://www.bhf.org.uk. 

Are you planning on wearing red tomorrow? Or will you be holding a red event? 

XxX

We have some news - finally!

It seems like we have been waiting forever but Great Ormond Street have given us some news on Harper's upcoming open heart surgery.

We have been waiting for the cardiologist's to come to a decision on whether Harper should have her heart repaired now, or if it should be left until she's slightly bigger. 

They have decided she will have surgery in 4 months, I have to wait for a letter with an exact date but it will be sometime around May. GOSH will next see her for an outpatient appointment in April, this will be our chance to ask any questions about the surgery.

In a way I'm glad, the bigger she is the easier the surgery will be..it also means I've got quite a while to get my head around it. On the other hand May is the month before her 1st Birthday..we have no idea how long she will be recovering for..just to expect to stay for at least 2 weeks. I'd hate for her to have to spend her Birthday in hospital..but GOSH know what they're doing and that would just have to be something we would deal with...

7 Month update

 Harper turned 7 Months old on the 21st, time is really flying! I can't believe she's got this far with no surgery, she really is our little fighter.

She's been teething for months now but there's no sign of any teeth, she bites on anything she can get her hands on, her Sophie La Giraffe teether is defiantly her favourite toy at the moment.

She is rolling around loads and we've had some attempts at getting up on her knees ready to crawl..but she's not quite there yet. 

She hasn't gained any weight in the last few weeks so she's stayed at 14lbs. She is in 6-9 month clothes but still fits into some 3-6 month dresses. She hasn't been doing so well with her bottles and is only taking around 3 ounces a feed, she's really enjoying her solids though and demolished a cream cheese sandwich yesterday.

We are still waiting to hear back from GOSH, I think there had been a mix up and she wasn't brought up in the cardiologist's last meeting for some reason. We've been told that we should defiantly hear back from them by this Friday. 

Here are some pictures of our princess from the last few weeks:

Don't forget to follow us on Instagram - HarpersHeart14 xxx