#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

Teddy - 2 year update

Finally getting round to writing up Teddy's 2 year update..my baby is now turning into a little boy!

He had a brilliant 2nd Birthday, we took him to the Sealife Centre in Brighton as he loves fish and it was a brilliant day out. Even Harper was mesmerised by all the fish and the pair of them were as good as gold considering it was quite a long day.

Ta Da!

On Brighton beach

Teddy has now started pre school, this is a huge change for us as we are together all the time, he rarely stays away & if he does it's only been because we didn't have a choice. He's been going 3 mornings a week but is struggling to let me leave and has attached himself to one of the nursery staff and doesn't leave her side at all. I'm hoping the more he goes he'll eventually enjoy playing with the other children.

Over the past few weeks we've noticed that he is more interested in Harper (he usually just ignores her) he's wanting to play with her and I've caught him trying to make her laugh a few times. 

He still has a dummy (or 5) and we have noticed that it's starting to affect his speech. When he hasn't got it in he talks really well so we are working on getting rid of them, it's hard as Harper has one and if we take Teddy's away he takes hers instead..maybe we should try and get them both off them?

How did you manage to loose the dummy? Leave a comment below as we are willing to try anything.

XxX

Now we wait...

Harper had an outpatients appointment at Great Ormond Street yesterday, 4 months after we last saw them.

As she's been doing really well growth and development wise I had got my hopes up that we would be told the same as last time..that she was coping fine and they'd leave her a few months again.

This time we saw the cardiologist that had seen us throughout my pregnancy, this was the first time he'd actually met Harper. While they checked her over and after having an ECHO he told us that he was really pleased with her, he thought the weight she'd gained since birth was really good for a baby with a CHD. 

He then said something I wasn't expecting at all - he felt now would be the time for her surgery. In his opinion she is a good weight and he feels there's no need to leave it any longer, she needs it done at some point so why not now.

He explained that he would have to discuss her at a meeting with the rest of the cardiology team and get their opinions too, they might feel its best to wait until she's slightly bigger.

We are now just waiting on a phone call to find out the outcome of the meeting and the plan that they have decided on.

I've never been so scared, I'll be so glad once this part is all over and we can just look forward to the future xxx

Wordless Wednesday