This week my Word of the Week is: Positives! #WotW

This week my Word of the Week is:

What a week we have had. Everyday there has been something to stress me out and test me and I am quite glad this week is over. This post has been quite a hard one to write as there is a lot of our week which I am not going to share. I am going to stick with the positives from our week!

On Saturday Ellie went off to her friends birthday party and had a fab time at the trampoline park. She was worn out by the time she got home and ached for a couple of days but it was the best day ever. It seemed so strange with her not being here on a Saturday afternoon. It was very quiet.

Instead of just playing on the laptop Becky decided to do something productive with her Saturday and got a few t-shirts of hers which she loves but they were stained and faded and dye them. She went off and bought a fabric dye and dyed them all green. She was so pleased with herself. They turned out well and it's like she has a new set of t-shirts.

The Timehop app told me on Tuesday that it was 10 years since Ellie jammed her fingers in the door which led us to find out that she had a heart defect and in turn Becky had the same which ended with open heart surgery. Thinking about it, it is really good timing with it being slap bang in the middle of CHD Awareness Week.

It left me feeling pretty lucky that the accident happened but at the same time it was like a punch in the stomach, thinking about the what if's. I wrote a few posts this past week because I like to raise awareness since Congenital Heart Defects are the most common birth defect.

I got to spend the day with Ellie when she had an unexpected day off school on Wednesday. She wasn't well. She felt achy, sick, worn out and had a bit of a temperature. She spent the day on the sofa under the duvet watching TV. She is so into the Harry Potter films at the moment and she has decided that The Goblet of Fire is her favourite so we watched that. It makes me so happy that she is a fan!

The kids break up from school for half term today and I am so glad. We are looking forward to a break from the routine and a couple of days out. All being well we're going to visit my great aunt and we're also going for a trip to the cinema. Ellie really wants to see the new How to Train Your Dragon film so Stu will watch that with her and I think Becky and I are going to see something else. I have no idea what yet. Stu has the week off work so it's going to be nice to spend some time together.

Advice for new CHD parents. #CHDAwareness

My girls had open heart surgery to repair holes in their hearts in 2009. You can read our story here.

Finding out your child has a problem with their heart is the worst feeling. You step into a different, scary world with medical professionals firing words at you which you don't understand, the unknown and uncertainty. 

You are not alone!

Many parents have been in your position before and many will be in the future. CHD is the number one birth defect and problems with the heart is more common than you think! There is a wonderful, supportive heart community out there. Facebook was a fantastic help to me. There are groups of people going through what you are going through. I am still in the Facebook group for the ward where my girls were treated. New people join and the older members offer advice. It was such an amazing support to me.

Arm yourself with information!

 Learn about your child’s specific heart defect from reputable sites so that you can feel confident in the choices you make for your child’s care! Knowledge is power! Try not to Google the what if's. You will always find the worse case scenario.

Treat Your Child as “Normal” as Possible!

Don't baby your child. You can spend your time worrying and stopping them doing things or you can live in the moment. They are not broken they just have a little bit of them which doesn't work properly. I babied my girls. As soon as I found out about their heart defects I stopped them running about as much and worried myself senseless!

Take Care of Yourself!

I wasn't great at looking after myself when my girls were in hospital and suffered because I didn't. I ate about 3 meals in the 7 days we were in hospital and two of those meals weren't meals they were sandwiches. I snacked on crisps, chocolate and coffee which was not good for me.

Take the time to take a break. Staying beside the bed is not good for you. Get some fresh air, take a walk or just go and sit on the loo and have 5 minutes to yourself. The nurses will look after your child when you are gone!

I was proud of myself at one point. Becky had just been moved to the ward out the intensive care after surgery and Ellie was in surgery, I said to the sister on the ward that I can't do this. I didn't actually say I needed help but I was crying out for it. She got the support/counselor woman to come and have a chat with me and it helped a lot.

You are Stronger than You Think You Are!

You really are! You might not think you are but you are! It is OK to be sad, upset, angry and worried but that doesn't make you weak! You will get through this because you have to for your child. 

Every Child is Different!

It is natural to want to compare your child to another child with the same heart defect but they are not the same. Every child is different! 

My girls had the same heart defect, a hole in near enough the same place in their hearts but their surgery and recovery was so different. Becky struggled to keep her oxygen levels up and fainted a couple of days after surgery but on the 2nd day for Ellie she was bouncing around her cot wanting to go to the play room. I was having to practically pin her down to keep the drains and wires in her. lol

Take One Day at a Time

There will be good days and bad days, sometimes good hours and bad hours. Celebrate the positives and try not to worry too much about the negatives. Looking too far ahead can overwhelm you. 

Before my girls even went into hospital I worried about how I was going to cope with two in at the same time. I spent far too much time stressing about the what if's but looking back now it was a waste of time and energy. You can spend your time worrying or you can live in the moment!

Ask Questions!

Ask questions about what you don’t understand. There will be things which you don't understand. Our surgeon was an amazing man but he was so laid back and relaxed about everything. What was a huge deal for us was just every day for him. He skimmed over things and we asked him to explain things in full which of course he did. There is no such thing as a stupid question. 

Hearing that your child has a heart condition is devastating but remember that surgical outcomes in the UK are some of the best in the world and the vast majority of babies born with CHD survive into adulthood and live normal lives!

S.W.A.K. Kissable Keychains - Review!

My 11 year old Ellie loves any little collectable toy, if it makes a noise it's even better! Recently we were sent some fab keychains to have a look at from WowWee.

Each S.W.A.K. keychain is lip shaped and comes with KissTech, a unique sensor technology that detects your cheek and gives you a kiss. The longer you hold it the longer it lasts.

There are 12 different keychains in the SWAK collection. Each S.W.A.K. comes with a postcard, sticker, and removable keychain. With a slot located at the top, your S.W.A.K. is also a fun way to display your favourite photos or cards.

We were sent 3 of the fab keychains to have a look at:

Stellar Kiss!

Why wish upon just one star when you can wish upon a billion of them? Close your eyes and dream big with Stellar Kiss!

Glitz ’n Glam Kiss!

Channel your inner starlet with Glitz ’n Glam Kiss! And be sure to invite your friends to the party. What’s a celeb without their entourage?

Prrrfect Kiss!

Cool cats unite! It’s time to unleash all that makes you wild and wonderful with Prrrfect Kiss. Me-ow!

Ellie loved them all. She couldn't pick her favourite. She liked the colour and design of two but the sound of the other better. She has decided to love them all equally and wants to collect more. At £5.99 each they are affordable for her to buy with her pocket money and I can see her buying more as she is so taken with them.

Reviewing these gave us a great opportunity to talk about kissing. I know at 11 years old she is not interested in kissing other people but it opened up a conversation about consent and how she can't go using these keyrings on anyone as they may not like it. She knows to ask permission but she is just going to stick with "kissing" me, herself and her sister if she lets her!

I think the S.W.A.K. keychains would make fab gifts for tween or teenage girls. The designs of them are sassy and the sounds they make are fun! Ellie has already decided to give two away to her two best friends so they can all have fun together.

We were sent these S.W.A.K. keychains free of charge in exchange for this blog post.

My blog posts about Congenital Heart Defects. (CHD's). #CHDAwareness

Over the years I have written quite a few posts about Congenital Heart Defects. (CHD's). Instead of rewriting them I thought I would just share some of the one's which are most important to me.

I wrote about The reality of heart surgery. It was a bit of a bit of a mind dump where I explained how I was feeling when my girls got diagnosed and stayed in hospital.

I wrote Where to find help & support when your child has a heart defect. Google is not the answer! When you Google things you always find the worse case scenario! 

I wrote about How having a CHD effects my girls lives. You would never guess they had heart problems if you met them but the signs are there.

I wrote about Louise, Jessica & Little Hearts Matter. Louise who blogs at Little Hearts Big Love has always inspired me to write about heart defects and I felt the need to when her daughter Jessica passed away.

I wrote Full of questions? Death? What if? when Becky had just turned 14. When my girls were diagnosed with their heart problems the doctors, consultants and surgeons said that without surgery my girls would have been dead by their teenage years. It hit me that Becky was a teenager!

I wrote about The Children's Heart Unit Fund. CHUF.  CHUF’s mission is to make life better for children and young people who are born with or develop heart conditions by providing lifelong support to them and their families.