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

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

Our Christmas

I thought I'd share some pictures of Harper and Teddy that were taken over Christmas...

Opening her first letter from Santa...

Teddy as a Shepherd in his preschool Nativity...

When they met Santa...

  

Christmas Day...

Their main presents..

Disney Cars table from Costco...

Little Tikes Activity Garden...

I hope you all had a brilliant Christmas and we wish you all a Happy New Year!!

XxX

6 Month update

Harper turned 6 Months old on the 21st of December..it's a big deal for us as she's managed to go this long without any surgery.

She was supposed to have an appointment with GOSH on the 23rd but because of her trip to hospital she wasn't allowed and it has been moved to the 19th of January. I'm glad in a way as it meant we didn't get any bad news before Christmas..but also means she's going almost an extra month without being seen.

We have started baby led weaning..she was weaned on purées because she was so young but now that she's 6 months I felt that I would like to give it a go. She seems to have taken to it pretty well..

She is still doing well on the high calorie milk and was last weighed at the hospital and was 13lb 7oz. She has just gone in to 6-9 month clothes. 

She can sit unaided for a little while and has started to try and get up on her knees during tummy time so I don't think it will be too long before she's on all fours getting ready to crawl.

She's loving toys at the minute especially her Bright Starts Minnie Mouse walker that she got for Christmas...she loves to be on her feet!

Hospital for Harper

The week before Christmas was the hardest week of my life so far..

Harper had caught a cold from Teddy but it didn't seem to bother her at all. A few days later she got a cough that seemed to get worse pretty quickly. On Monday 15th December I took her to my GP..they said it was just a cold and that she would get over it by herself. 

That afternoon I decided to take the kids to see their Nan & Grandad in Surrey. When we got there Harper didn't seem herself at all..she suddenly got a temperature and went floppy so we called for an ambulance.

As soon as we got to the hospital and described what had happened they told us she had bronchiolitis and would need to be put on oxygen as her levels were really low. 

We waited 8 hours for a bed for her..she had a feeding tube put in and a nasal cannula as well as a mask for oxygen.

Everyday was up and down..one minute she seemed to get loads better and they would turn the oxygen right down..then she'd need it turned right back up. She started to refuse to be bottle fed which was worrying, she didn't start again until day 5.

Teddy found it really hard..he wasn't sleeping, I was told he was waking in the night crying for me. In the end he spent most days up the hospital with us which seemed to help but it was heartbreaking watching him leave in tears. I felt like I was choosing one of my babies over the other. I don't know how it's going to work when Harper goes for her heart surgery..we already know other children aren't allowed up there.

I found it a constant battle with the nurses as none of them understood Harpers condition and would do things that GOSH had already told me they shouldn't do. One night I sat awake watching her SATs monitor because the nurse kept switching her oxygen up when she's normally only 95 anyway..I felt I was constantly reminding them to do things and begging them to call GOSH to check things with them first.

We spent 6 days in Epsom hospital..finally getting discharged on the Saturday evening. Neither Harper or Teddy were 100% even on Christmas Day but I was glad we were all home and could spend the day together.

XxX

Immunology Appointment

Harper had an appointment with immunology at the Royal London Hospital yesterday to check if her spleen was working.

Babies with Heterotaxy are often born with no spleen or one that has split into two or more, both options mean the baby doesn't have a working immune system and would need to be on medication for life.

The consultant we saw told us that a scan had shown Harper had one spleen but it was an abnormal shape. He told us this was because it had tried to split at some point but hadn't. Blood tests showed that she has a good working immune system so is classed as having one working spleen.

This is such a relief and one less thing to have to worry about. We are off to Great Ormond Street today for a heart scan as they have brought her appointment for December forward to today as she has struggled with weight gain.

Keeping our fingers crossed it's more good news today xxx

The Mummy Tag

1. Are you a Stay at Home Mum, or a Working Mum?

A stay at home mum.

2. Would you have it any other way?

Defiantly not, I love spending all my time with my babies, especially with Harper's condition I think it's important that I'm with them all the time. 

3. Do you co-sleep?

We do with Teddy, but it wasn't intentional. He slept in his cot until 8 months old, then he was poorly one night and wouldn't settle at all, so in the hope of getting some sleep I put him in my bed. He then refused to go back in his cot and even now at almost 2 he wakes in the night most of the time to get in our bed. I won't co sleep with Harper.

4. What is your one must-have item for your baby?

Harper's favourite thing is a blanket, she won't settle without one and likes to have it next to her face, which gives Mummy a heart attack!

5. How many kids do you plan on having?

I'm happy with 2, I don't plan on having anymore.

6. Date nights? How often do you have them? 

Never if I'm honest, I don't really feel comfortable leaving the kids.

7. Your child's favourite show?

It changes all the time but Teddy loves Mickey Mouse Clubhouse at the minute. 

8. Name one thing you brought before you had the baby and never ended up using?

A Dr Browns microwave sterliser, the Tommee Tippee one is much easier to use.

9. Your child's favourite food?

Toast haha. 

10. How many cars does your family have?

2

11. Weight gain, before pregnancy, during, after and now?

Before Teddy I was around 9st, I went up to 11st and only managed to get down to 10st 7 a year after and then fell pregnant with Harper. I was over 11st during my pregnancy with Harper but didn't really weigh myself that much and am now down to 10st 3lb 4 months after. I'd like to lose a stone before their Christening next month.

12. Dream holiday with your kids?

Disneyland Florida - one day :)

13. Dream holiday without your kids?

If I could leave them lol it would probably be Mexico or Paris.

14. How has your life changed since having kids?

I don't go out anymore, I haven't had a drink in almost 2 years but my days are full of fun and non stop laughter. 

15. Finish the sentence "It makes heart melt when..."

Teddy is loving towards Harper

16. Where do you shop for your kids?

Mainly Next but also Spanish Boutiques.

17. Favourite make-up and skincare products?

Couldn't live without my MAC Studio Sculpt foundation and Liz Earle Cleanse & Polish. 

18. Huggies or Pampers?

Pampers! I found Huggies leaked when I tried them with Teddy, I've never had a problem with Pampers.

19. Have you always wanted kids?

More than anything.

20. Best part of being a mum?

The lovely cuddles and kisses I get all the time.

I tag anyone who reads this :)

4 Month Update

I really can't believe 4 months have passed since I met my beautiful baby girl, I also can't believe how much she has changed in that time.

She is becoming her own little character now and is such a smiley happy baby. She has just learnt to blow raspberries which she finds really funny and is cooing away non stop lately.

She seems to be hitting milestones pretty well despite us being told that she'd probably be slower than a heart healthy baby.

So far she can:

- Smile

- Laugh

- Hold her head steady

- Roll from front to back

- Reach for objects and grab them

- Bring objects to her mouth

- Coo

- Stand with support

She had her first go in a door bouncer a few days ago, I was really nervous for some reason and thought she'd hate it but she loved it! Teddy found it amusing too even telling her to 'dance Harper'.

By the time Teddy was 4 months old we had started to wean him, down to health visitors advice because he had silent reflux, but I'm not planning on doing the same with Harper. I don't feel that she is ready at all and I think I'd like to try BLW this time as Teddy was weaned on purées. The health visitor has mentioned weaning earlier than 6 months on a high fat diet to help with weight gain so I'm not sure how this will fit in with BLW until I speak to her more about it.

Harper now weighs 11lb 13oz and is in 3-6 month clothes. She's very long though and think she will have to wear 6-9 month sleepsuits in the next few weeks, they grow too fast!

XxX

Too tiny

One of the main things Great Ormond Street have told us to keep an eye on is Harper's weight. It's important for her open heart surgery that she is as big as she can possibly be, making it easier for the surgeons and should help with recovery.

Over the last few weeks Harper has gradually dropped down a centile and was heading towards passing another. I was extremely concerned (although my health visitor didn't seem to be) and called GOSH to get their advice.

They have advised me to try a high calorie milk in the hope that this will boost her weight gain, they have started her on SMA high energy which she seems to have taken to pretty well. After only being on it for a few days it seems that it is working as she is now climbing back up the growth chart.

This has made our consultant at GOSH reconsider Harper's next appointment, she wasn't due to be seen until December, but they are now sending an appointment out to see her in the next couple of weeks.

Although I'm so thankful that they want to check her over sooner I'm now terrified that this could mean surgery sooner than they had planned. I had pushed it to the back of my mind thinking that it wouldn't be something we needed to worry about this year, the day is going to come at some point, I just keep hoping that it's not just yet xxx

So proud

Over the last few months Harpers Daddy, Auntie & Uncle have been taking part in different events to raise money for Great Ormond Street.

Although Harper hasn't had any surgery there yet the support they have given us throughout pregnancy and over the last 4 months has been unbelievable. Any concerns I have about Harper they are only a phone call or email away and the cardiologists and nurses that we have seen so far have been nothing but kind and understanding.

Harpers Uncle took part in the 3 peak challenge back in September, climbing the 3 highest mountains in the UK in just 1 weekend, her Auntie took part in the color run in Brighton, something that's completely out of her comfort zone & her Daddy is taking part in the Royal Parks Half Marathon tomorrow. The 3 of them set a target for £2000 which they have manage to reach and pass raising over £2400. 

I am so proud of all of them for what they have done and would like to thank everyone who has donated so far, it means so much to us and I know what it will mean to GOSH.

If you would like to donate you can do via their Just Giving Page https://www.justgiving.com/teams/harpers-heart

3 Month update

I can't believe how fast the last 3 months have gone. Harper is no longer my little newborn baby. She's now smiling away and can even roll from her tummy to back. She's starting to hold her head really well too - all milestones that I am so proud of as we were told throughout pregnancy that she would probably be slower than other babies.

Harpers doing okay weight wise, but it has been very up and down. We will have days where she'll finish most of her feeds, but then others where she can only manage a few ounces. She weighs 10lb 7oz and is following the 25th centile although she has started to drop down below it. We are going to see how she does in the next couple of weeks and if she is still struggling the GP will talk to us about putting her on a high calorie formula. 

She's growing way too fast, I put a 3-6 month sleepsuit on her a few days ago and I'll probably be lucky if she gets another wear out of it! I can't believe I'm having to by 6-9 month clothes already.

She is so much like Teddy, not only her looks but everything she does..you can defiantly tell they are siblings. Ted loves her so much and Harper's even started to try and talk back to him.

Here is the first picture of them both together, pulling the same face!

I thought I'd share some pictures of her from the past month, you can also follow me on Instagram where I post more often, search for MissCharLouise xxx

GOSH Outpatients Aug/Sep

I haven't posted in ages, mainly because I've been struggling to deal with everything and couldn't face writing it all down. 

At Harpers first GOSH appointment back in August we didn't get the news we had hoped for, we were told to expect her to need surgery within the next few months and when I asked about her life expectancy I was told she would 'hopefully go to school'. They told us they were going to discuss Harper with the other cardiologists that evening and would give us another appointment in a months time.

When we went to the follow up appointment last week I had prepared myself to be told she needs surgery now and had to hold back tears in the waiting room. We were called in to the ECHO room and saw a different consultant. He explained that there was some confusion over some of her veins, as her condition changes the place of everything in the body. He said they would need to be clear where they all where before they could operate. 

Once he had finished the ECHO he had a huge smile on his face & told us he had good news. All her veins are in the correct place and doing what they should be. That wasn't all - the hole between the bottom chambers has completely closed, there is no rush to do surgery now. 

I have never felt so relieved, although I know there will be a time that she does need open heart surgery, it's not right now. GOSH don't even need to see her for another 3 months as she's doing so well.

It looks like we will get to spend Christmas all together, something I'm looking forward to more than anything. Although it's still months away I've already started my shopping and looking for new decorations as everything was really rushed last year because we had only moved in to our house at the end of November.