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

This week my Word of the Week is: 

Yet again another obvious word from me and I know I have used it many times before but sometimes the same word needs to be reused, especially at this time of year. This past week was all about getting back into a routine after the Christmas break and it was hard. Especially when it came to getting up earlier, when all I wanted to do was stay in bed because it was so ruddy cold! It has literally been freezing over the past week. We've still not had any snow here but it has been very icy each morning which has caused a little disruption to the buses. Ellie was late for college one morning but thankfully Stu has made it to and from work each day without any issues.

I have found a little routine for myself which is working well. I get up, potter around the house and do the jobs which need doing before I switch my laptop on. I will then have a couple of hours doing bloggy things. I'll have my lunch and a chat with Stu when he rings on his lunch break. After that I do an out of the ordinary job. This past week I've been decluttering and organising my wardrobe. It was a bigger job than I thought it would be. Who knew I had so many clothes that I'd not worn in years. I will then have another hour on my laptop, a chat with the girls before I start in the kitchen and cook our tea.

It has been nice to have a proper meal plan and eat proper meals instead of just picky bits and snacks. Don't get me wrong, we have still been eating leftovers from Christmas, mostly sweets, crisps and of course Christmas cake but the Gousto meals we've had this week went down really well and I have enjoyed being back in the kitchen. I really want to do some baking but that can wait until things are a bit more settled. As much as I have been in more of a routine this week, Stu had 3 days off work this week, he used up some holidays that need to be used up before April and the start of the new tax year. He always disrupts my days when he is home. Hehehe

On Thursday, we had Ellie's routine check on her heart. She had surgery to fix a hole in her heart when she was a baby, along with her sister and they both have checks every few years. Becky had hers at the end of November and was told her leaky valves were leaking more but not to worry and she will be checked again in a couple of years and Ellie was told exactly the same on Thursday!! I am taking the girls not being seen for 2 years as a good thing. I never thought I would say that I love a doctor more than our original specialist who found the girls heart problems but this guy who we've seen the last couple of times comes pretty close. He's just one of those people who puts you straight at ease and you can tell he really cares. He remembered seeing Becky in November but had to wait for us to say that she was Ellie's sister, data protection and all that. He said next time their check-ups come around, he wants to see them both at the same time so he can have a good look at their hearts and compare them as two siblings having identical heart defects does not happen very often!

We finally went and saw my dad yesterday. It seems ages since I last saw him. It was only Boxing Day but that seems weeks ago. I suppose it was but he had a little break away with his partner and last week we all forgot it was Friday. lol He had lost track of what day it was and so did I. It was probably for the best as it was the day when we were panicking over the buses not running because of the icy roads. It was lovely to have a catch-up and we were there a good 5 hours.

How has your week been? I hope you have had a good one! I am of course linking up with Anne who blogs at Raisie Bay to join in with her Word of the Week linky!

Why I’m still talking about CHD's - Sixteen years after surgery!!

It’s hard to believe that it’s been sixteen years since my brave girls had their open heart surgeries! Yes, both of them! For those of you who’ve followed my blog for a while, you might remember that I shared our CHD story just after I started blogging - Part one and Part two and every year since.

The short story is that my youngest jammed her fingers in a door where she needed surgery to fix them and a heart issue was found. An Atrioventricular septal defect (AVSD), a hole in her heart. We saw a specialist and when the symptoms were listed my eldest showed more signs so she was checked and had the same, an identical defect with her heart. Tests were done and surgery was booked in. We were told that if that freak accident didn't happen and the heart defects weren't found one of my girls would have just dropped one day and their heart would have given up. The girls went into hospital on the Sunday the 16th of August, we remember it well as it was my fellas birthday, Becky had her surgery on the Monday and Ellie on the Tuesday, both spending a night in PICU. It still doesn’t feel real saying that out loud.

A congenital heart defect (CHD) is a problem with the structure of the heart that’s present from birth or even before. It can affect how blood flows through the heart and to the rest of the body. CHDs are the most common type of birth defect, in fact, around 1 in every 100 babies is born with some form of heart condition. There are many different types of CHD. Some are mild and may never cause any noticeable symptoms while others can be serious and require surgery, sometimes within the first year of life or even before your child is born.

Thanks to advances in medicine and incredible cardiac teams across the country the outlook for children born with CHD has improved dramatically over the past few decades. Many children with even the most complex heart conditions go on to live full and active lives. That’s why awareness matters. The more people understand about CHDs, the more support there is for affected families and the more funding can go toward research, treatment and support services. Many heart families go through long hospital stays, countless check ups, emotional strain and uncertainty that can stretch across years.

I remember the feeling of helplessness so well. One child just out of theatre, groggy, with wires and tubes everywhere and then barely having time to catch our breath we had to hand over our youngest for her own surgery. My heart broke a thousand times that week but it also swelled with pride and love in ways I never imagined possible! Fast forward sixteen years and both of my girls are thriving. They’re smart, funny, thoughtful, resilient and absolutely full of life. You would never guess they have had heart surgery just looking at them unless you noticed their scars.

It is important to me to keep telling this story. Not just because it’s a huge part of our lives but because I know how comforting and encouraging it can be for other heart families to hear that there is light at the end of that terrifying tunnel.

If you’ve found your way here because your child is about to have heart surgery or they’ve just had it I want to say this clearly and honestly: I know how scared you are! I know the crushing weight of waiting! I know the ache of watching your child hooked up to machines! I know the feeling of forcing yourself to eat a sandwich you don’t want because you haven’t eaten in 10 hours! I know the fear! I know the hope! I know the guilt! I know the strength you don’t even realise you have yet but I also know this: There is hope! You will get through this. Your child is stronger than you know and you are too! There will be a day maybe not tomorrow, maybe not next week but one day when the beeping monitors and hospital smells are a distant memory. One day, you’ll be watching your child laugh with friends, roll their eyes at you during a family dinner or tell you about their dreams for the future and you’ll feel this enormous wave of gratitude for just how far you’ve all come.

Here are some of my previous blog posts about heart defects, surgery and the aftermath!

The Facts! Congenital Heart Defect's!

The reality of heart surgery as a parent!

Advice for new CHD parents!

How having a CHD effects my girls lives!

Full of questions? Death? What if?

5 tips for parents that are worried about their children’s scars.

There’s not a day that goes by when I don’t feel grateful to the NHS. For the surgeons who fixed my girls hearts, the nurses who helped when they were in pain, gave me a hug when I felt helpless and for every single person who supported us during those scary days. 

We’ve come a long way since that hospital ward. The fear is still there sometimes, I won't let my girls ride rollercoasters in case it stresses their hearts, anniversaries tend to stir up all sorts of emotions but now the overwhelming feeling is gratitude. Here’s to sixteen years of strength, healing and hearts and here’s to the future because it’s looking so very bright!

15 years since the open heart surgery.

Tomorrow is Stu's birthday which is also a reminder that it's 15 years since I was packing a suitcase not to go on holiday but to go to the hospital so both of my girls could have open heart surgery. Yes, both of them! Each year I like to write about my girls heart surgery to remember how lucky we are to be able to share our story and to raise a little bit of awareness about heart defects! You can read our full story, today I am just going to tell the short story.

The short story is that I was born with a hole in my heart which didn't need surgery and it was only discovered when I fell down the stairs and broke my arm when I was about 4 years old. My girls were born with heart defects too, most likely passed down from me as they both have different father's. The girls heart issues were only discovered when Becky pushed a door shut on Ellie's fingers and she had surgery to straighten a couple of fingers. We were referred to a heart specialist who went through the symptoms and despite Ellie showing only a couple Becky showed more so she was checked out too and her heart was exactly the same as Ellie's.

Congenital heart defects (CHDs) most common symptoms depend on the type of defect in the heart and can include: Bluish lips, skin, fingers, and toes, breathlessness or trouble breathing, feeding difficulties, low birth weight, chest pain, delayed growth and a small size or low body weight, abnormal heart rhythms, dizziness, trouble breathing, fainting, swelling and fatigue.

Ellie showed none of the symptoms apart from sweating a lot. I mentioned this again and again before her heart defect was found and everyone told me some people just sweat more than others. Becky was really thin despite her eating lots, in the winter she always had blue lips and hands when she was outside but that was just put down to her weight.

There are several types of CHD. Some of the most common include: Ventricular septal defects, Atrial septal defects, Tetralogy of Fallot (TOF), Pulmonary valve stenosis, Patent ductus arteriosus, Dextro-transposition of the great arteries (D-TGA), Aortic valve stenosis, Single ventricle defects, such as double outlet right ventricle (DORV) and hypoplastic left heart syndrome (HLHS) and some babies are born with more than one defect.

Both of my girls were diagnosed with atrioventricular septal defects. An atrioventricular septal defect results in a large hole between the upper filling chambers and the lower pumping chambers of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand side of the heart work harder and function less well.

The causes of congenital heart defects among most babies are unknown but it averages out 1 in 100 babies have some sort of heart defect so it is more common than you think.

We went into the hospital on the Sunday, Becky had her open heart surgery on Monday and spent a night on PICU, Ellie had her surgery on Tuesday and took Becky's place on PICU. They both recovered well and quickly and the following Saturday we were allowed to go home. It was honestly the worst time of my life. I did write about the reality of open heart surgery but even that can't get across how I was feeling. Taking one child for surgery is bad enough but taking another less than 24 hours later was unimaginable. I don't know how I did it, I really don't. 

After the heart surgery both of my girls were left with leaking heart valves but they are fit and well at the moment and I hope it stays that way. Their heart issues don't really effect their day to day life apart from in the winter when Becky feels the cold more and her lips sometimes have a blue tinge to them which is quite normal. Soon after her surgery she started putting on the weight that was needed. She's still thin but nothing compared to how she used to be. Recently Ellie spent a couple of nights in hospital and when she was in A&E they checked her heart and panicked me telling me that something wasn't quite right. It turns out they hadn't read her notes about her heart problems. Her heart was checked and it's still all good. Both of the girls are due a check up on their hearts sometime over the next 12 months, I'm not looking forward to it but they couldn't care less. They take it all in their stride, it's just a day trip out for them!

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! Doctors now expect that around 96 percent of people who get a CHD diagnosis and receive hospital treatment will survive! There is a ton of advice and lot of support out there, I wrote a blog post all about offering advice to new CHD parents, things I wished I knew when my girls were diagnosed. My biggest pieces of advice are take one day at a time, look after yourself too and you are stronger than you think you are.

Do you know anyone with a CHD?

14 years since open heart surgery.

 Today is Stu's birthday which is also a reminder that it's 14 years since my girls both went into hospital to have open heart surgery. Each year I like to write about my girls heart surgery to remember how lucky we are to be able to share our story and to raise a little bit of awareness about heart defects! You can read our full story here.

The short story is that I was born with a hole in my heart which didn't need surgery and it was only discovered when I fell down the stairs and broke my arm when I was about 4 years old. My girls were born with heart defects too, most likely passed down from me as they both have different father's. The girls heart issues were only discovered when Becky pushed a door shut on Ellie's fingers. Ellie's heart defect was discovered when she was in surgery to fix her fingers and we were referred to the heart specialist who went through the symptoms and despite Ellie showing only a couple Becky showed more so she was checked out too and her heart was the same as Ellie's. 

Congenital heart defects (CHDs) most common symptoms depend on the type of defect in the heart and can include: Bluish lips, skin, fingers, and toes, Breathlessness or trouble breathing, Feeding difficulties, Low birth weight, Chest pain, Delayed growth and a small size or low body weight, Abnormal heart rhythms, Dizziness, Trouble breathing, Fainting, Swelling and Fatigue.

There are several types of CHD. Some of the most common include: Ventricular septal defects, Atrial septal defects, Tetralogy of Fallot (TOF), Pulmonary valve stenosis, Patent ductus arteriosus, Dextro-transposition of the great arteries (D-TGA), Aortic valve stenosis, Single ventricle defects, such as double outlet right ventricle (DORV) and hypoplastic left heart syndrome (HLHS) and some babies are born with more than one defect.

Both of my girls were diagnosed with atrioventricular septal defects. An atrioventricular septal defect results in a is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well. An atrioventricular septal defect is a form of congenital heart disease a term used to describe a problem with the heart’s structure and function due to abnormal development before birth.

The causes of congenital heart defects, such as AVSD's among most babies are unknown but it averages out 1 in 100 babies have some sort of heart defect so it is more common than you think.

We went into the hospital on Sunday the 16th of August, Becky had her open heart surgery on Monday and spent a night on PICU, Ellie had her surgery on Tuesday and took Becky's place on PICU. They both recovered well and quickly and the following Saturday we were allowed to go home. It was honestly the worst time of my life. I did write about the reality of open heart surgery but even that can't get across how I was feeling. Taking one child for surgery is bad enough but taking another less than 24 hours later was unimaginable. I don't know how I did it, I really don't. 

After the heart surgery both of my girls were left with leaking heart valves but they are fit and well at the moment and I hope it stays that way. Their heart issues don't really effect their day to day life apart from in the winter when Becky feels the cold more and her lips sometimes have a blue tinge to them.

It seems ages since they last had a check up. They had their last checks, last year and are back next year. It's the longest they have gone without check up since their heart issues were discovered. It makes me nervous but at the same time I know they are OK. Things are fantastic at the moment which is completely different from what I felt this time 14 years ago!

Congenital Heart Defect Awareness Week 2023!

Every year from the 7th to the 14th of February is Congenital Heart Defect Awareness Week. It is here to promote awareness and provides education about congenital heart defects. (CHDs). I am not just jumping on a bandwagon and a cause, I have had first hand experience of heart defects which I will come to in a moment.

A congenital heart defect results when the heart or blood vessels near the heart doesn't develop normally. It’s the most common birth defect in babies and more than 1 million babies worldwide are born each year with a congenital heart defect. It’s the most common birth defect and the most common cause of infant death among birth defects.

There are several types of CHD. Some of the most common include: Ventricular septal defects, Atrial septal defects, Tetralogy of Fallot (TOF), Pulmonary valve stenosis, Patent ductus arteriosus, Dextro-transposition of the great arteries (D-TGA), Aortic valve stenosis, Single ventricle defects, such as double outlet right ventricle (DORV) and hypoplastic left heart syndrome (HLHS) and some babies are born with more than one defect.

I had a hole in my heart from when I was born and that was discovered when I fell down the stairs and broke my arm when I was about 4 years old. I didn't need surgery.  My girls were born with heart defects too. The girls heart issues were only discovered when Becky pushed a door shut on Ellie's fingers and she needed surgery to fix them. You can read our full story here which I shared years ago.

Both of my girls had Atrioventricular septal defects (AVSD's). An atrioventricular septal defect is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well. After their heart surgery they were left with leaking heart valves.

Charities like Tiny Tickers want to increase early detection rates of cardiac conditions so they are not missed like my girls heart defects were missed during my pregnancies and when they were new born's. 

The causes of congenital heart defects among most babies are unknown. Some babies have heart defects because of changes in their genes or chromosomes. We have looked into what caused my girls heart defects and nobody knows. It could be a faulty gene from me, it has to be from me as the girls both have different father's or it could just be bad luck. There is no real way to know. The girls can choose to have tests when they were older but I wasn't going to push them into it a few years ago. It is only really going to effect them when they have their own children and then they will be monitored closely.

The CHD symptoms depend on the type of defect in the heart defect but the most common symptoms can include: Bluish lips, skin, fingers, and toes, breathlessness or trouble breathing, feeding difficulties, low birth weight, chest pain, delayed growth and a small size or low body weight, abnormal heart rhythms, dizziness, trouble breathing, fainting, swelling and fatigue.

Before Becky's heart defect was discovered she was really thin and did have blueish lips but we just that down to her always feeling the cold. Ellie showed none of the main symptoms but did sweat a lot as a baby, we know now that it was because her heart was working more than it should have been.

Children with minor heart defects may not need any treatment, some may heal on their own with time but some that have serious symptoms may need medical or surgical treatment within the first year of life. The treatment depends on the type and severity of the heart defect. In these cases, treatment may include the following:

Medications.

There are various medications that can help the heart work more efficiently. Some can also be used to prevent blood clots from forming or to control an irregular heartbeat.

Implantable Heart Devices.

Some of the complications associated with congenital heart defects can be prevented with the use of certain devices, including pacemakers, defibrillators (ICDs). A pacemaker can help regulate an abnormal heart rate, and an ICD may correct life-threatening irregular heartbeats.

Catheter Procedures.

Catheterization techniques allow doctors to repair certain congenital heart defects without surgically opening the chest and heart. During these procedures, the doctor will insert a thin tube into a vein in the leg and guide it up to the heart. Once the catheter is in the correct position, the doctor will use small tools threaded through the catheter to correct the defect.

Open-Heart Surgery.

This type of surgery may be needed if catheter procedures aren't enough to repair a congenital heart defect. A surgeon may perform open-heart surgery to close holes in the heart, repair heart valves, or widen blood vessels.

Heart Transplant.

In the rare cases in which a congenital heart defect is too complex to fix a heart transplant may be needed.

Regular follow up appointment are needed just to check on the heart, even if the patient has had successful surgery and is leading a very normal life. My girls used to go for a check up every year and at their last appointments Ellie was given 2 years without an appointment and Becky 3 which is real progress. They will have appointments for the rest of their lives because of the way their hearts are. In the past there has been talk of more surgery to fix the leaking valves which they were left with but their valves haven't changed in the last 5 years so surgery may not be needed.

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! Doctors now expect that around 96 percent of people who get a CHD diagnosis and receive hospital treatment will survive.

Have you heard of Congenital Heart Defects before?

13 years since open heart surgery.

Today is Stu's birthday which is also a reminder that it's 13 years since my girls both went into hospital to have open heart surgery. Poor Stu doesn't have much luck with his birthdays, we are all recovering from Covid so his birthday meal out has been postponed until we feel 100%. I suppose it's still a better birthday than the one he had 13 years ago. lol

Each year I like to write about my girls heart surgery to remember how lucky we are to be able to share our story and to raise a little bit of awareness about heart defects! You can read our full story here.

I had a hole in my heart from when I was born and that was discovered when I fell down the stairs and broke my arm when I was about 4 years old. My girls were born with heart defects too, most likely passed down from me as they both have different father's. The girls heart issues were only discovered when Becky pushed a door shut on Ellie's fingers and she needed surgery to fix them. Charities like Tiny Tickers want to increase early detection rates of cardiac conditions so they are not missed like my girls heart defects were missed during my pregnancies and when they were new-born's. 

Both girls were diagnosed with atrioventricular septal defects. An atrioventricular septal defect results in a is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well. An atrioventricular septal defect is a form of congenital heart disease a term used to describe a problem with the heart’s structure and function due to abnormal development before birth.

The causes of congenital heart defects, such as AVSD's among most babies are unknown but it averages out 1 in 100 babies have some sort of heart defect so it is more common than you think.

Congenital heart defects (CHDs) most common symptoms depend on the type of defect in the heart and can include: Bluish lips, skin, fingers, and toes, Breathlessness or trouble breathing, Feeding difficulties, Low birth weight, Chest pain, Delayed growth and a small size or low body weight, Abnormal heart rhythms, Dizziness, Trouble breathing, Fainting, Swelling and Fatigue.

My girls really didn't show any of these to an excess. They were both born weighing over 6 and a half pounds, Becky was always thin but it was put down to that's how she was but did have blue lips and fingers in the winter but that was put down to her weight and Ellie was always sweating, even on the coldest of days she would be dripping.

We went into the hospital on Sunday the 16th of August, Becky had her open heart surgery on Monday and spent a night on PICU, Ellie had her surgery on Tuesday and took Becky's place on PICU. It was the worst week of my life! They both recovered well and quickly and the following Saturday we were allowed to go home. After the heart surgery both of my girls were left with leaking heart valves but they are fit and well at the moment and I hope it stays that way. Their heart issues don't really effect their day to day life apart from in the winter when Becky feels the cold more and her lips sometimes have a blue tinge to them. The girls have had check ups every year since, well apart from during Covid when they weren't at high enough risk to require a check up. 

Both of my girls have had checks on their hearts over the past year and we finally got to see some doctors instead of just having the scans and being sent on our way. Ellie's doctor was amazing and it turns out it's the last time she will be seen in the children's department at Scunthorpe, she will in future have to go to Hull's adult department which is fine because Becky visited there for her check up and the doctors are amazing there too! Their hearts are good, well as good as expected with leaking valves and it doesn't really effect their day to day lives. Ellie doesn't have to go back for 2 years and Becky has been given 3 years without a check up. The best news we had was the chances of them needing surgery in the future has dropped dramatically because the state of their hearts have not changed in about 5 years.

Congenital Heart Defect's (CHD's) are the most common birth defect's in the UK! If you don't know someone with one, eventually you probably will! 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! Doctors now expect that around 96 percent of people who get a CHD diagnosis and receive hospital treatment will survive. My girls are an example of that! 

Do you know anyone with a heart defect? 

Do something good today! #GiveJoyForJessica

It is 4 years today since a very special girl passed away. Jessica was the daughter of Louise who blogs at Little Hearts, Big Love and Jessica is someone that I will never forget, her smile was infectious, she was always the happiest girl and is a real inspiration to me and many others. 

Jessica was born with hypoplastic left heart syndrome (HLHS), which meant she only had half a functioning heart. Jessica had her first heart operation before she was born and she had several more after that. Louise's was one of the first blogs I remember reading and thinking I need to keep reading. Louise raised a lot of awareness about heart defects and her family and life interested me because both of my girls had open heart surgery to fix holes in their hearts. Louise also gave me the confidence to write about my girls hearts on my blog and raise awareness about heart defects.

Louise, Jessica's mum says "Jessica spread so much joy in her short life that her godmother once referred to her as a “joy carrier”. It was such a perfect description of our brave girl. She was so full of smiles, even when she was in hospital, and she made so many other people. Her strength and her joy continues to inspire us."

Today I am remembering Jessica and reminding you that it's nice to be nice. Why don't you do something good today! You don't have to go out of your way to do a good deed and make someone smile, here are some simple ideas.

Hold a door open for someone.

Take in a neighbour’s parcel.

Ask a loved one about their day.

Tell someone you love their outfit or hair.

Let someone have your seat on the train / bus.

Let another driver out of a junction.

Check on someone who seems upset.

Compliment a stranger.

Donate to charity, old clothes, food or toiletries.

Make someone a cup of tea.

Telling someone they have something on their face or in their teeth.

Smile when you pass someone on the street.

Buy the person behind you a coffee.

Write a  thank-you note to someone who won’t expect it.

Swallow your pride and apologize for something you’ve done whether big or small.

Answer the phone in a cheerful voice.

Let someone go in front of you in line who only has a few items.

Buy a warm meal for someone in need.

Stop to help someone who looks lost.

Practice self-kindness and spend 30 minutes doing something you love today.

What will you do today to be kind and spread a little joy?

What a difference a good doctor makes.

We haven't had much luck with doctors over the last couple of years and it has frustrated me so much. It has got to the point now when I go with the kids to their hospital or doctors appointments ready for an argument. It shouldn't be like that!

It all started when we moved here and our GP referred Becky instead of Ellie to Audiology for a hearing check. It was a medical mix up. In the end it was all sorted out but because the pandemic was in full swing we only had a telephone appointment with the audiologist. He was in lovely man who had time for us and was a great help. He wrote a letter to Ellie's school confirming Ellie was deaf. It is hard to get the extra support because Ellie's deafness isn't visible. She doesn't have a hearing aid yet, that is a work in progress and he also referred us to a hearing support network through our local council who liaise with the school. We were supposed to see him at the hospital when it was safer, after Covid but that didn't happen, goodness knows where he went but each time we've been to audiology since I have looked for his name on the list of doctors and he is never there.

At the end of 2020 Ellie went for a hearing test and a check up and we did not get on with the doctor! He hadn't read any of Ellie's notes, did not know why we were there, he seemed confused that we had travelled to Scunthorpe from Newcastle when we had actually moved house and rolled my eyes so much. When he said that Ellie shouldn't go to nightclubs or spend time in factories she turned to him and said that she was only 13 years old so the chances of that happening was slim.

We have seen a couple more doctors to do with Ellie's hearing who haven't read her notes and then the worst appointment ever when we were told Ellie had small, old bleeds on her brain that were found during the MRI scan before she gets hearing aids fitted. The doctor was less than helpful, did nothing to reassure us, wouldn't answer any of our questions, mumbled and used medical words we didn't understand and wouldn't explain. I was so angry, upset and worried! A complaint has since been made. 

When we had Ellie's heart check a few weeks ago I was dreading it! In hindsight I could have taken Stu along but we thought it was still one parent per child. I was really starting to stress myself out as the appointments were running half an hour late but I know it's pretty normal. We took a whole afternoon of one doctors time when my girls were diagnosed with holes in their hearts. These things happen but as soon as we walked into the doctors room both Ellie and I felt at ease and the cardiologist told us that he likes to chat, likes to answer any questions and has time for us!! Wow! Usually we feel rushed but this was so different. 

The cardiologist chatted to Ellie about all sorts. Roblox, PE lessons, what she wants to do when she leaves school and told us it's good that she wants to be an engineer but not in the army as with her heart defect she wouldn't pass the medical tests which was interesting to know. It was a clever way to get information from her but still talking about things which interested her.

He said it has been a while since he got to do an echocardiogram (heart scan) on a child Ellie's age and said younger kids wriggle about, jump off the bed and some have to be pinned down, in the nicest way possible. He told us that earlier that day he had to scan 8 superhero action figures before a little boy would let him anywhere near him. He was one of those doctors which just has time for his patients. While doing Ellie's scan he talked us through what he was looking at, pointing everything out even the stitches around the hole which was patched. It was fascinating to hear and see. I have had the basics shown to me before but not in that much detail.

The cardiologist answered all of our questions and I had a lot after not seeing a heart specialist for over 2 years. I had mentioned that I was unsure about Ellie having her Covid Vaccine after reading things online about the side effects and he seemed upset that I didn't have someone to contact to ask these questions from the hospital and his team. We had a person when we used to live in Northumberland, someone based at the Freeman Hospital and we were told that when we moved here we would have the same but that didn't happen. He gave me his card and that has a phone number and email address on and said if I have a question to get in touch even if I think it's stupid, there's no stupid questions when it comes to the heart and my kids health.

I also found out that since the pandemic started the hospital has been in the process of switching from paper notes to notes on the computer and he found that the doctors would only look on the computer and not through paper notes and certainly not through a folder the size of Ellie's. He said hopefully now that we have had a check on her heart all the doctors that we see in future for other things will get a grasp of her whole medical history.

Ellie has now been discharged from the children's department as her next check up will be in two years when she will almost be 16 years old but we will get to see the amazing Cardiologist once more at his teenage clinic in Hull. When we left his room and said goodbye we were taken by another member of his team to explain the transition from children's to adult cardiology and he said Ellie will be seen by the same cardiologist for each check up or a member of their team, at Hull.

Becky had her first visit to the cardiologist out patients clinic in Hull a couple of weeks ago, the same one that Ellie will be going to for a check on her heart and the nurses and doctors there were amazing too. They had so much time for us, they were friendly and again explained everything. She doesn't have to go back for 3 years so we will back there with Ellie before Becky goes again and I feel really happy going there. 

I feel so much more relaxed about the girls heart appointments now. A good doctor really makes such a difference. A good doctor makes us feel at ease, reassures and will answer any questions that we have! I am glad we have at least a couple now.

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

This week my Word of the Week is:

On Wednesday we were at the hospital (again). This time for a routine check on Ellie's heart. She had open heart surgery to fix a hole in her heart when she was almost 2 years old and we have been having yearly check ups since, well mostly, a year was skipped because of Covid.

The appointment went really well, the doctor was amazing and he put us at ease straight away. Ellie's heart looks great which is of course a huge relief. He said it hasn't changed since she was last scanned in Newcastle over 3 years ago which is positive. The chances are if it doesn't change in the next few years Ellie will never need any more surgery unless something changes way later in her life. It was also the end of an era, Ellie has been discharged from the children's outpatients and referred to adults. Her next appointment will be in 2 years which is a big deal. We only usually go at the most 18 months at the most between appointments, well apart from when we're in a pandemic. We will still be seen by the amazing doctor at least once again and then will be passed over to one of his team.

The good news doesn't stop there though! About 5 weeks ago we got the results from Ellie's MRI scan, it was just routine before getting hearing aids fitted and it showed old bleeds on her brain. It was a massive shock and worry for us and I have been stressing ever since. The doctor we saw didn't give us any information of even a hint at what could have caused them and told us to wait for a neurosurgeon appointment. 

I took the opportunity on Wednesday to ask the cardiologist about if Ellie's heart problems could have caused the bleeds on the brain and he told me yes!! He said that it is really common for brain bleeds to happen in heart patients especially when people are on a heart bypass machine. It was probably mentioned to us before the surgery as a complication but as she didn't show any symptoms nothing more was thought about it. If symptoms aren't shown they don't go looking for them in every heart child. He told us not to worry and that he would put a letter in with Ellie's notes to say we have spoken about it and share his opinion so the neurologist people can see and he said they might actually do the appointment over the phone instead of dragging us all the way to Hull. 

I came out of the hospital grinning ear to ear. It feels like a weight has been lifted, the relief was immense! I feel like we can now stop worrying a little and relax. 

12 years since my girls heart surgeries.

This week marks 12 years since my girls and I spent a week in hospital where they both had open heart surgery, yes both of them. Each year I like to write about it to remember how lucky we are and to share our story to raise awareness about heart defects! you can read our full story here.

I was born with a hole in my heart and thankfully didn't need any heart surgery. The hole was small enough to close up it's self. Both of my girls were also born with holes in their hearts which were missed at birth. I would say it was just bad luck but the hospitals don't have the greatest reviews and reports. Becky's I could understand being missed but Ellie's was spotted by a young trainee doctor. He spotted a murmur but was told it was nothing by a more senior doctor.

The girls heart defects were only discovered after Becky shut a door on Ellie's fingers. She needed surgery to straighten her them where the murmur was again discovered. It was a freak accident but that accident saved both of their lives. If Ellie didn't have that accident they could have been dead by now. I have been left with the thought of all the what if's?

Both of the girls had Atrioventricular septal defects (AVSD's). An atrioventricular septal defect is a large hole between the upper filling chambers (atria) and the lower pumping chambers (ventricles) of the heart. The hole allows more blood to flow from the left side of the heart to the right. This increases the pressure of the blood travelling to the lungs, making the right hand-side of the heart work harder and function less well.

The causes of congenital heart defects, such as AVSD's among most babies are unknown. Some babies have heart defects because of changes in their genes or chromosomes. We have looked into what caused my girls heart defects and nobody knows. It could be a faulty gene from me, it has to be from me as the girls both have different father's or it could just be bad luck. There is no real way to know. The girls can choose to have tests when they were older but I wasn't going to push them into it a few years ago. It is only really going to effect them when they have their own children and then they will be monitored closely.

We went into the hospital on Sunday the 16th of August, Becky had her open heart surgery on Monday and spent a night on PICU, Ellie had her surgery on Tuesday and took Becky's place on PICU. They both recovered well and quickly and the following Saturday we were allowed to go home.

It was honestly the worst time of my life. I did write about the reality of open heart surgery but even that can't get across how I was feeling. Taking one child for surgery is bad enough but taking another less than 24 hours later was unimaginable. I don't know how I did it, I really don't. 

After the heart surgery both of my girls were left with leaking heart valves but they are fit and well at the moment and I hope it stays that way. Their heart issues don't really effect their day to day life apart from in the winter when Becky feels the cold more and her lips sometimes have a blue tinge to them.

Over the past year there is only Becky who has had a check up on her heart and it is all good. Well as good as it can be with leaking valves but the detrition which happened for about 8 years after her surgery seems to have slowed down and there hasn't been any change in a couple of years which is fantastic. 

I am putting the lack of check ups on Ellie down to Covid and the fact that she isn't an urgent case. Becky was seen at the end of March and it took until the end of June to get the report from the doctor who had looked at the scan of her heart. We keep getting letters from the hospital to say Ellie is on the waiting list and will be seen in time and it's the same for me. I was told when Ellie had her check up in November 2019 that I needed a check up to and was referred to the hospital. Every few months I get a letter telling me they haven't forgotten about me.

Things are fantastic at the moment which is completely different from what I felt this time 12 years ago!

How I will be making people happy today. #GiveJoyForJessica

It is 3 years today since Jessica died. The little girl with a special heart. In case you didn't know Jessica was the 6 year old daughter of a fellow blogger, Louise who writes at Little Hearts Big Love.

Jessica was born with a condition called hypoplastic left heart syndrome (HLHS) which basically meant she had half a working heart. Jessica was given her first heart surgery before she was even born and many more after. One of the first blogs I remember reading and following was Louise's. She blogged a lot about heart defects and as both of my girls have been through open heart surgery to fix one defect (holes in their hearts) and were left with another (leaky valves) her family and life interested me. Louise also gave me the confidence to blog about my girls hearts.

To do something positive and #GiveJoyForJessica Louise wants us to bring another person joy and make them smile. One thing about Jessica was that no matter what she was going through she was always full of smiles. Her godmother called her a "joy carrier" which is so true. Every time I see a photo of Jessica I smile.

I am taking today to remember Jessica and to do some little things to make people happy.

Instead of Stu making the morning coffee's I am going to make them. It will be a nice treat for him. I might even make him some toast or a bacon sandwich.

We will be visiting my dad today and I will be taking his partner her birthday present. It's not her birthday until tomorrow so it will be a nice surprise for her. I am also going to get her a bunch of flowers and while I am in town I am going to get some nice cakes from the bakery as a treat for us all.

While I am in town I am going to smile and say good morning to people. A lot of people do it here and I never feel comfortable talking to strangers but I am going to step out of my comfort zone and do something to maybe make someone smile.

I am going to look out for people to help and help them if I can. Simple things like holding doors open, let someone in front of me in the queue in the shop, 

I am going to make an effort and text a few people just to say hello and later tonight I am going to ring my great Aunt. She won't be expecting the phone call and I probably will start it by saying " don't worry, there's nothing wrong" but it will be a nice surprise for her. I speak to her about once a fortnight but always think I should ring her more.

I am going gift the kids some random dance or costume on Fortnite. They are always asking for V-Bucks so getting a new dance or costume will really make them happy.

What will you do today to make someone happy?

5 tips for parents that are worried about their children’s scars.

As parents we know that young skin is sensitive and precious and it is natural for parents to worry that any damage will leave a visible scar.

From babies exploring their new world to school children in the playground accidents happen. More than two million children under the age of 15 experience accidents in and around the home every year and sadly some children will also suffer from significant trauma caused by surgery, burns or serious accidents.

Both of my girls have been left with scars down the middle of their chest and the top of their stomachs from the drains when they had their open heart surgery to repair the holes in their hearts.  

5 tips for parents worried about their children’s scars:

Acceptance - If your child is injured or needs surgery you are obviously going to be worried about what sort of scar it might leave. The reality is that if you have a burn or graze and it hasn’t healed in 10 to 14 days or a surgical or traumatic wound that cuts through the deep layers of the skin then a scar will form. The sooner that you can accept this the more able you are to move on to protecting and treating the scar.

Encourage body confidence -  The children who cope well with scars are those who are encouraged to talk about it. Whether it’s a small scar or a larger area it can have a psychological impact on children. So giving young people and yourself the confidence to talk about their scar and to answer other people’s questions is vital.

For years Becky has been really self conscious about the scar on her chest. She is still not 100% confident but over the summer she wore lower cut tops and you could see the top of it. Being a teenager is hard when all you see in the media is all those pretty, air brushed people with not a mark on them. I think with age she will gain confidence.

Stay sun safe - Scar tissue has poorly functioning melanocytes, the body’s natural protection against UV so it very important that you protect a scar from the sun’s rays at home or abroad. 

TLC - For the first 12 or18 months a scar is still in the maturation phase but there are steps you can take to help your child’s scar to heal well. For example, regularly apply moisturiser to help hydrate the tissue and massage the area. 

Don’t let it hold you back - It’s so important for children of any age to be outside and active so a scar shouldn’t stop them from enjoying life. While you will naturally feel cautious of any further injury you need to encourage your child to return to their normal routines. If you’re on holiday as long as you follow sun protection guidelines and protect the scar from over exposure to UV, children can play on the beach, swim in the sea and enjoy outdoor activities.

Have you had to manage any scars your children have gained or do you have any on yourself?