Fergus - The badly bent arm

Fergus - The badly bent arm.

On Tuesday the 31st of March I went to pick up the boys from school and they were playing with some children running around on the field next to the playground when Fergus fell and hurt his right arm.

He was upset and crying (but was still able to tell me "Anton pushed me" which he says all the time even when Anton is nowhere near him) and when I assessed the arm it was limp at the wrist and he couldn't straighten it.
He is normally pretty tough & just has a moment to recover & just gets going again but this was different.

I called Jared and Anton to sit with him while I went out to the carpark, buckled Dominic in his seat and brought the car down the drive.
The boys sat in the car while I took Fergus into the school office and medical room. (It was a toss up whether to go in for an ice pack or straight to hospital).
The lady their put an icepack on the wrist & she did a first aid check of his arm, he wasn't crying now just whimpering (she asked what is he normally like when he hurts himself as he was so quiet & calm) but I knew something more was going on, he was given a sling and we left.

I dropped Jared & Anton off at Nanna & Granddad's house, raided their cupboard & grabbed some biscuits, muesli bars & water (good thing too) and went straight to the hospital. (This gave me time to pray, thank God & build up my spirit before dealing with the next part of our adventure).

We got to A & E around 4pm.
Where he was assessed and they asked if he'd had anything for pain, I said no but he wasn't given anything then (because he looked like he was coping).
We went to x-ray and back to A & E, then we had to wait.

By 6:30pm he started to whimper as it was hurting, I went to line up at the desk I spoke to the receptionist but needed to see the nurse who was busy, I was still waiting when we were called through around 7pm.

We were shown the x-ray & told he had a bend/bulge in the bone by the wrist which they would need to try and straighten.
They told us he had done amazingly well with having no pain relief & must have a high pain threshold (which I thought & can now confirm).

He was given Paracetamol & Ibuprofen liquid by mouth & another pain med which is given into the nose (which felt very weird for him). Then he had to wait for these to take effect.

Throughout the whole time Dominic was with us & he did so well, We played with the few toys we had available & ate the snacks I'd grabbed but by 7pm he was getting hungry, grizzly & tired.

Thankfully a St John volunteer came to see us & she talked to/entertained Fergus & Dominic, I asked if there was anything Dominic could eat like a banana & she managed to find one (it disappeared pretty quick, once Dominic got hold of it) & he had a feed of milk to keep him going.

The nurse & doctor came & Fergus was given laughing gas to use for pain, while the doctor pushed the bone back into place.
The gas put Fergus in a funny/silly mood & the nurse was telling him bad jokes so he was laughing & saying funny things but he didn't feel any pain.
The doctor used the ultrasound to check the bone was straight & then the plaster cast was put on from hand, over elbow to underarm.
All up we were there 4+ hours.

We got McDonalds on the way home for tea but Dominic went to sleep in the car & didn't wake till morning.
Fergus was greeted by his brothers when he got home they were all eager to find out what had happened.

They all got tucked up in bed & slept all night. (It was Mum who needed to have some quiet time to unwind & just breath).

8th April 2015- A week later

Fergus managed really well with the cast, the hard part was keeping him still, it was starting to go soft in places.

When they took it off he had a purple bruise on the inside wrist either from the fall or the doctor straightening it or both.

The new cast is in racing red made from fiberglass & only hand to elbow (so he can bend it now).

So glad children adapt and bounce back from these things so well.

Also thankful for the care that we get at the hospital even though we had a wait it goes to show that we were seen according to need, considering how quickly Fergus has been treated before when it was for his heart condition.

Thank God, for his strength, grace, guidance, peace and love that gets us through each and every day. Amen.

Fergus 6 years on from diagnosis and Starship - memories of that day.

It's 6 years ago since Fergus was flown by Life Flight to Starship Children's hospital. He was diagnosed at 10 weeks old with a Congenital Heart Condition that was on the severe end of the scale.

Fergus is a fighter - he made it to 10 weeks old even though he wasn't gaining weight, was vomiting with feeds, seemed to have a cold, was snuffly (which was actually from having fluid on his lungs) and fell asleep from the exertion of feeding. All unbeknownst to us because his heart and body were struggling to just keep him alive.

I'm so glad I realised things weren't quite right and kept going back, to plunket to weigh him and the GP on the 9th Jan who refered him to a Paediatric doctor in Nelson Hospital for the 15th Jan 2009 visit to Out Paitents that became a life changing day for Fergus and our family.

I'll never forget that day, Kerry and I were there with Fergus (Jared and Anton were with grandparents). The doctor met us in the waiting room and said to me "has he been breathing like that for long" she checked his vitals then took us into a treatment room in children's ward, they called for an Echo to be done and from the way they were talking between themselves I knew this was serious. They put an IV line in one arm and Fergus was admitted, then the doctor came in and after talking by phone with the starship doctor said Life flight was on the way to take us to Starship.
At this point we were in shock but got focused on what we needed to do, there was only room for one of us in the plane so I had to go and Kerry would follow in a commercial flight the next morning.
We rang our families and Kerry went home and packed me some things to take. My Mum and sister came to the hospital. It all seemed so surreal. They wanted to put a second IV line in for the flight and the Nelson doctors tried but couldn't get one in his tiny veins, when the Life flight team arrived their doctor tried again but the only place they could find a viable vein was on his head. They put Fergus in a portable incubator and we left around 10pm, took an ambulance to Nelson airport, got loaded onto the plane (they put Fergus in the back with the doctor and nurse and I sat in front, it was pretty noisy and Fergus had a pair of tiny sick on earmuffs put on and I had to wear earmuffs too, it seemed like the longest time on that flight in the dark with only a few lights below us, nothing familiar and my head full of thoughts and questions and all I could do was look behind me to try and see if Fergus was doing ok), we both flew for our first time to Auckland, then another ambulance ride to Starship, and into PICU where Fergus was settled into a little bed surrounded by machines. I had to go and learn how to express and it was now 12am.
What a day it was!

Today and every day I'm thankful for the people who helped us, the prayers that were said and for God who heard and answered those prayers and blessed us with our children and gives us the strength we need each day to live in victory, with joy and love in our hearts.
We have Abundant life and abundant blessings!

Fun, Joy and Cheering! 2015

Well here we are in 2015, the old saying "time flys when your having fun" seems a good way to describe the last year or two!
………………………………………………………………

My family is and has been my main focus at this amazing time in my life (coming up 12 years a Wife and nearly 11 years a Mummy/Mum) and I'm so thankful to be able to share my life with my favourite 5 people in the whole world everyday. (Yes we now have 4 boys, we welcomed Dominic Seth to our family on 27th January 2014).

My family is so precious, I've been blessed with my husband and 4 boys, I love these guys, MY guys so much!

There's a lot going on in a household full of boys/men (and its not just eating, sport, cars, making clothes dirty and playing minecraft or Xbox, but you could be fooled in to thinking it was…lol)

There are some big things taking place every day. Such as each one discovering their individual and different personality and traits, their heart, passions, giftings, loves, finding the place where they can be and love themselves, aswell as the struggles and fights that they face and the breakthroughs and victorys that they celebrate.

My guys are:
beautiful (handsome according to them), smart, funny, amazing, rowdy, bousteroius, gentle, caring, loving, crazy, cool, loud, quiet, vocal, warriors, physical, thoughtful, outgoing, reserved and so much more!

I just wish the days were longer, as there never seems to be enough time to fit in all the things that have to be done with the fun stuff I'd rather be doing or time I'd like to spend with them, and by the time we've got all those other things done, the fun doesn't seem long enough!

……….........................................................................

I get to love, observe, guide, listen to (even when the words are few) and encourage each one in different ways.

Throughout their journey I'm there; holding their hand, hugging it out, calling their name, cheering them on, picking them up, brushing the dust off, sending them out, welcoming them home. And they know it :-)

A recent example of this was the school production. Two were in the chorus and one was a dancer.

The chorus came into the hall over the main stage, (I had a spot at the back where I could stand up and wave, I was holding Mr D and sitting next to me along with Dad, were 4 grandparents and aunty too).

Mr A came in first and I'm waving flat out and cheering hoping he'll see us, he is waving to the crowd but doesn't appear to see us but I still wave as he walks over the stage and he kind of glances toward me as he reaches the far side to go down the stairs.

Next is Mr F, he sees me and waves and beams us a big smile, now we're all waving and cheering and he's looking directly at us as he reaches the otherside he bumps into the boy in front as the line slows down and gives us one more wave as he goes down the stairs.

Mr J, we see during the show dancing up a storm, at the end his group is introduced and all come onto the stage and he is smiling and waving, as are we right back at him.

When I talk to them all later their comments were:
Mr A, I saw you waving at the back (but he didn't show us in his reaction),
Mr F, I saw you all waving (and we knew it) and
Mr J, I couldn't tell where you were but I just waved cause I knew you were there.

It just made me think about how different they are and how what I do for them is seen, acknowledged and responded to in their own way, but is still valued greatly.

I've thought about it a lot since then and resolve to always wave! (weather I think they see me or not and I look like the crazy Mum in the back, I'm not one to make a spectacle of myself but for them I'll make an exception, WHY…because they know I'll be there!).

This made me also refect on my relationship with God and helping the boys to grow in theirs.
Weather I've got my eyes on the path ahead, I'm looking right at him, or I'm in the spotlight and can't see out into the crowd. Theres one thing I know… GOD'S THERE, he's my, my hubbys and the boys biggest fan and cheerleader!

***   ***   ***   ***   ***   ***   ***   ***   ***

Psalm 73:23-28English Standard Version (ESV)

23 Nevertheless, I am continually with you;
    you hold my right hand.
24 You guide me with your counsel,
    and afterward you will receive me to glory.
25 Whom have I in heaven but you?
    And there is nothing on earth that I desire besides you.
26 My flesh and my heart may fail,
    but God is the strength of my heart and my portion forever.

27 For behold, those who are far from you shall perish;
    you put an end to everyone who is unfaithful to you.
28 But for me it is good to be near God;
    I have made the Lord God myrefuge,

 that I may tell of all your works.

………………………………...........................................

I'm looking forward to the year ahead and finding more time for fun, joy and cheering; as I cherish each age and stage we reach and achievement we make along the way!

Merry Christmas! Jesus is the reason for Christmas!

We want to wish everyone a wonderful Christmas. May you and your family have a great Christmas day, celebrating together, and even if not together with family may you have a really special day!

My boys are getting really excited. They are counting down to Christmas day.
We have been making presents and cards to give to people.
They are excited and a little scared about singing in front of church, with the other children on Christmas day, I'm looking forward to seeing this!

Christmas this year is different for us, as Christmas is on a Sunday this year, We will go to church then stay for a combined lunch, it will be awesome to celebrate in a big group and then to spend time with our families later in the day. It kind of seemed strange to begin with, doing it this way as we normally only spend the day with family, then I realized all the people are my family, Gods family, natural family and even the strangers on the street. We are part of a huge family!

Please remember the reason for Christmas isn't to eat huge amounts of food, to buy and give lots of presents, to have a holiday or dress up in a red suit.
It's about the day the earth received the most precious gift of all, The baby Jesus! The son of God and man.
He was born into a world where there was no Christmas day, no room to stay, not much food to eat and King Herod wanted him dead, but in spite of the time and place the one thing they had in that stable and family was Love!

I want Christmas to be a time to celebrate, praise God and thank him and show his Love through our actions!
We are trying to do what we can to teach our children that it is better to give than receive!
I want us to be thankful for the blessings we have and to bless those around us in what ever way we can.

On the night Jesus was born a star shone brightly to show the way,
to the place where they saw a baby, a son, our Savior and King, Gods only son, the most precious gift we have ever known.

I am honored to be his child, to bow down before his thrown, to be thankful for the blessings he has given our family and to have him dwell within me.

My prayer:
I pray that there will be more of you and less of me, Lord, for your ways and plans are bigger than what I can see or understand.
You only want the best for me, I am your instrument Lord, use me.
Guide me and help me to walk in faith, to honor you always in my life.
Give me your heart and to love the world as you do,
I will be your hands and feet, Please help me to see where there is need and to be able to care for my family, and your family too,
sometimes it is hard to know what to do or to get moving, so Lord, give me the guidance and strength I need to be of influence for your kingdom. Amen


The Star
By Lesley

On the night he was born a star shone brightly to show the way,
to the place where they saw a baby, a son, our Savior and King, Gods only son,
the most precious gift we have ever known.
The star was a guide, to where they saw the holy sight, of the baby Jesus, born that night.
The angels sang, all heaven rejoiced.
Praising Gods name and lifting their voice.

What a blessed event, the birth of this precious child,
who was the son of God and man,
born in a stable in Bethlehem.

He came to live amongst us, to teach and show the way,
For his father God was with him and he is with us today!

Do you choose to know him, for he knows about you,
He yearns to be your Father, if you will let him in.

So ask, seek him and knock on the door, He is waiting for you to respond.
His heart is for you, It is you that he loves!
Your the reason he sent to earth his one and only son!

When you accept him, all heaven will rejoice, you are filled by his spirit and love.
So choose to follow for he is the way, The light of the world on the darkest of days.

God is like the star on that blessed and holy night, that shines continually strong and bright.

He wants us to Love with a heart just like his, so accept him as your Savior and let his light shine in!




If you want to know more about Jesus and God find and contact or visit a local church and I'm sure they will help answer any questions you may have. Or contact me I am happy to help if I can.
When you accept God as your savior and get planted into a church.
Your life will change in an awesome way!

Merry Christmas to you all!
Bless you Lesley.

Our declaration of faith ~ Baptisms of Lesley and Kerry - We've been set free!

A day of joy for Celebration Centre Nelson.
http://celebrationcentrenelson.com/

What an awesome day we all had on Sunday 3rd July 2011.
After a great servive and time of connection at a pot luck lunch, We all moved to the Ngawhatu pool.
19 people including Kerry (my husband) and myself (Lesley) were baptised. Our families came along too.
The church had fun in the pool afterwards.
The pressence of God could be felt and I know much Celebration in the heavenly realms took place that day!!!

John 8:31-32 &36
Jesus said, “If you hold to my teaching, you are really my disciples.
Then you will know the truth, and the truth will set you free.”
So if the Son sets you free, you will be free indeed."

Romans 10:9
Because, if you confess with your mouth that "Jesus is Lord" and believe in your heart that God raised him from the dead, You will be saved."

K-LOVE - Laura Story "Blessings" LIVE

I'm really connecting with this song at the moment.
"Blessings" by Laura Story is really beautiful and the lyrics are really so true.

It relates to all of us, as we all have a story and journey we are on.
The trials and tribulations we go through in life can lead us, If we let them, to a greater place of Understanding, Love, Joy and Thankfulness for the Blessings in our lives.

In recent times, things have seemed so hard for me and my family, in so many areas.
I can testify that when I got things right with God and I let God take the burdens I was carrying, of hurt and pain, from me and let him draw me closer, my life began to change in amazing ways.
God can Heal; Restore, that which is broken; Soften, hearts; Encourage and Teach us, how to love wholely and completly.

All Blessings come through God, if he is willing and in His timing. He knows what is best for us!
We do not need to know the plans God has for us, that is for him to know.
We just need to have Faith and Trust in God!

He declares to prosper us and not harm us, plans to give us hope and a future. So when we seek him with all our heart, we will find him and he will bring us back out of exile, and draw us closer to him.

God keeps his promises!
So push harder into Gods word and let him minister to you and allow your faith to grow.

No matter how broken, hurt, sad, or happy and thankful you are.
He hears us, listens and administers to our needs.

THANK GOD FOR WHAT YOU HAVE,
ASK GOD FOR WHAT YOU NEED.

For with God all things are possible!
Glory be to God always!

Jeremiah 29:11-14
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the LORD, “and will bring you back from captivity.[a] I will gather you from all the nations and places where I have banished you,” declares the LORD, “and will bring you back to the place from which I carried you into exile.”

Matthew 19:26
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

Look at us now!

Here we are June 2011 and things are going well for us all. We really have been blessed. A lot has happened since my last post. Some stress and changes but all for the better.

Kerry and I had a rough patch in our relationship, even separated for a few months but with what our family had been through no wonder. Things made us reassess the path we were on. While Fergus was having his procedure I sat in his hospital room and prayed to God that if he would return Fergus to us I would do anything! and I had been trying to do this in my own way. I knew things needed to change.
We made a choice to commit to God and get planted in a local church and to love each other in-spite of our faults and differences, our family is doing wonderfully better now. Life is far from easy but with God we can do anything!
Joshua 1:9 "As for me and my household we will serve the Lord".

In March Fergus had a specialist check up. He had an ECG done the week before and a Sedated ECHO when Dr Clair O'Donnell came for her clinic. JOY! He is managing well which we could see outwardly but with these tests they could see both valves are working as well as they can!
The Mitral valve (had a broad leak before) now has a narrow leak back into the top chamber and the Aortic valve (which had a small teardrop opening before the Cath & balloon opened it) now appears to have two leaflets and has a mild leak both ways. Considering how Fergus was at the beginning, we are AMAZED! He doesn't need surgery for a valve replacement yet, which we were told we needed to get him to two years old for. Now they say he may need replacement valves done anywhere from now up to a teenager. Praise God and the power of praise and prayer.
Luke 1:37 "For nothing is impossible with God".

We have been Home Educating the boys since Jared turned 6 years in May 2010. It's been a full year and we really are enjoying each other and learning together. We have done some fun activities and I can see the boys developing before my eyes. Jared is 7 years, Anton is now 5 years and Fergus 2 1/2 years. They are my precious gifts and through learning at home I get to build a great bond with them while giving them the opportunities to be mature and independent men. I love it!

I have so many blessings! God, Husband, Children, Church, Life!

Fergus 18 months old!

Photo Fergus 17 months old. 27/4/2010.

Heart Children 2010 - Update Fergus’s Story
18 months old
27/5/2010


Fergus was born on the 5th November 2008.
At 10 weeks old Fergus was rushed by Life Flight to Starship Childrens Hospital in Auckland and he was daiognosed with a life threatening congenital heart condition.

15 January 2009 - Cardiac Diagnosis

1. Congenitally dysplastic mitral valve with severe regurgitation and stenosis.
2. Congenitally dysplastic aortic valve with severe stenosis.
3. Severely dilated left atrium.
4. Subsequent severe left ventricular hypertrophy.
5. Hypolastic right ventricle.

29 January 2009 - Cathertisation procedure

Balloon dilatation of aortic valve done via carotid artery using 7mm balloon.



Hello I am Lesley, Kerry is my husband and we have 3 boys; Jared 6y, Anton 4y and Fergus 18 months. This is my account of Fergus’s story.

Since learning of Fergus’s unique heart in 2009, it has almost been 19 months,
there has been a lot to cope with at times, but as always Fergus has amazed us all with his fighting spirit, happy personality and willingness to get on with life.

Life flight rushed us to Starship and we stayed for 3 weeks from the 15th January 2009 until the 5th February 2009. Then Life flight moved us to Nelson Hospital before we finally retuned home on 9th February 2009.

After the initial tests, the doctors told us there was nothing they could do for Fergus. We had been in Starship for 2 weeks while they kept doing more tests and still saying there was nothing they could do.
We couldn’t believe what they were saying.
All we could do was love and support him. He seemed to be deteriorating as each day passed but we didn’t give up hoping and praying for a miracle.

The situation was out of our hands so all we really could do was care for Fergus, give him all our love and attention, and keep praying. Every one we knew along with their churches, as well as other people who had never prayed in their lives was praying for Fergus. He was on so many prayer chains that we have no idea how many people were praying along with us. It ment a lot to know we had the support of so many people. All in their own way collectively asking, praying and hoping for a miracle!


Then the doctors decided to offer to do a Cathertisation procedure - Balloon dilatation of the aortic valve, but this offer was made with the understanding that it was very risky and may not have a good outcome or could be fatal.

We decided to have the procedure done.
We had confidence in the medical and surgical team that they would do everything they possibly could to get him through this procedure and care for him afterwards.
It was our only option and we had to give him this chance at life.

The Cathertisation procedure was done via common carotid artery cutdown and they used a 5mm, 6mm, and finished with a 7mm balloon. This helped increase blood flow through the aortic valve and relieved some of the pressure on his heart, which in turn reduced the amount of mitral valve regurge going back in to his lungs.
He came through in the best way they could have hoped for!

We stayed at Starship for another week then Life flight flew us back to stay at Nelson Hospital for 4 days to get to know the hospital and staff. Then we were allowed to go home, for as one doctor put it ‘for Fergus to have a trial at life’ this was a very strange feeling.

People said to us ‘it will be good to go home and get back to normal’ but you never can go back, and what is normal anyway?
You come home to a completely new life and have to change your lives to begin building a new kind of “normal” that suits the needs of your family.
This is not a bad thing but it can be hard to adjust to, understand or explain to others.

Having a child who needed so much care really helped us to focus on getting things done. It put a lot of extra stress and pressure on our family too but we made a real effort to appreciate the little things, like spending time with all our children having cuddles or playing and especially any milestones that the boys met and the huge smiles Fergus would give us.

We tried to make every second count!

Since returning, we have managed Fergus’s care at home and haven’t needed to stay in hospital. The doctors didn’t know how well he would be so he has done amazingly well to not need hospitalisation at some point.
He had a Nasogatic tube (NG) to help fed him from 15th January 2009 until the 30th November 2009. Almost a full year. We sterilised all his bottles and feeding gear and only gave him boiled drinking water until he was 1 year old.

He was Breastfed from birth, but found this to tiring, so after he couldn’t drink from me I expressed. He was exclusively fed breastmilk for 6 months and then I toped it up with formula until he was 1 year old, after this he went fully on to formula, which he still has now. He has always had Duocal added to his milk feeds to add more calories in to his diet.
At feeds he was first offered a bottle and any milk he didn’t drink was given via the NG tube. Which ment feeding could take a while.
It was done like this as he would become too tired with feeding to get enough milk because it put extra work on his heart, but we still needed him to have a chance to learn to suck, as this helps with eating and speech. He was given a dummy (pacifier) while we were in Starship and he has continued to have one. He is now eating all the same meals as the family with extra things added like butter or cheese to increase his calorie intake.

We were told Fergus was not a candidate for intubation, ventilation or admission to intensive care as there was no surgical option.

Over the winter of 2009 we made the decision to do as much as we could to minimise the risks of infections and illness for Fergus and also to help his body put energy in to growth, not fighting to keep him well.
So all of us apart from Fergus had flu injections and we decided to home educate our two older boys, over this time he only had a slight cold and one fever which we managed at home, so we felt we had made the right choice.
As he had kept growing well, so had the strength to fight these illnesses on his own.


2010 - We all had flu injections this year including Fergus.
We will continue to home educate our children to help meet all of their needs; as our oldest son has Encopresis, which affects him as a soiling problem and our second boy also has Encopresis, which affects him as constipation and we need to help them manage this, as well as concidering Fergus’s Heart condition.

You might think this is a lot to deal with but I love that I am getting to know my boys so well, I can support them as they grow, we can learn together as a family and we are teaching them to become the best boys and men they can be.
They really make us proud!

Fergus after a lot of care has kept growing well and is now following on the 50th percentile for weight and the 97th percentile for height.
He eats well and He has kept up with all his milestones – he was walking the week of his 1st birthday, says a few words and feeds himself!
He has a big interest in vehicles and some of his first words were “brumm and truck”. He is also a big help around the house.
He is into everything and loves exploring and tries to keep up with his two older brothers.

Apart from his frist rushed trip on Life flight to Starship Childrens Hospital in Auckland and a scar on his neck where he had a Catherterisation operation - Balloon Dialation of the aortic valve done at 12 weeks old, needing to rest frequently as he becomes tired quite quickly, taking a small dose of Amiloride and Frusemide each day which helps to reduce fluid build up in the body and adding Duocal to his milk to add calories to his diet, he is now similar to most other well children of his age.

The doctors now feel he could manage common illnesses better and would be given more intensive support in hospital if it was needed.

His heart is keeping up with his needs so far and as long as it keeps managing as it is; it looks like he may not need to have open heart surgery to replace the aortic and mitral valves at 2 years old like it was first thought; he will be monitored until there are signs of any changes affecting his heart or fluid building up in his body; but surgery will still be needed at some point in the future.

We were told nothing could be done until he was 2 years old and that he might not stay well enough to even live to 2 years, so anytime over this age without the need for surgery is a great achievement for him and our family.

Every day we give thanks that Fergus was given to us!
We feel privileged to be going through this journey with him, for what it has taught us and the growth that we have made as individuals and as a family.
To be able to support him in everything he has been through so far and is yet to come, and now to see him growing, learning and enjoying life. Is just Amazing!

He is such a special part of our family!
All my boys are my Hearts Delight!

We are so blessed to have Fergus in our lives!

He is a real little Miracle!

Contact us: lesleyandkerry@slingshot.co.nz
or visit: http://heartsdelightmyboys.blogspot.com

Fergus's Story - from the beginning

Hello my name is Lesley my husbands name is Kerry and our 3 sons are Jared, Anton and Fergus. We live in Richmond, Nelson, New Zealand.

Fergus was born on 5 November 2008.
We had a beautiful homebirth and there were no signs of Fergus having anything wrong.

He was diagnosed at 10 weeks old with a very serious heart condition.

Congenital Heart Disease/ Congestive Heart Failure


Cardiac Diagnosis - 15 January 2009

1. Congenitally dysplastic mitral valve with severe regurgitation and stenosis
2. Congenitally dysplastic aortic valve with severe stenosis
3. Severely dilated left atrium
4. Subsequent severe left ventricular hypertrophy
5. Hypolastic right ventricle

What this means is:
The two valves on the left side of his heart are abnormally formed.
The Mitral valve doesn’t close completely so blood flows back through in to the left Atrium (top chamber) which made the left atrium very large.
The left Ventricle (bottom chamber) has a very thick wall, because it has to pump harder to keep the blood flowing around the body.
The Aortic valve had a single teardrop shaped opening which was very small, instead of having three leaflets to let the blood flow through.
The right Ventricle is smaller than it should be.

Congestive Heart Failure in Fergus’s case is caused by the valves on the left side of his heart being so abnormally formed that blood has a difficult time ejecting from the heart, leading to backup into the lungs which is worsened by a leaky Mitral valve. A result of congestive heart failure is poor growth as all the extra work results in the inability to take in enough nutrition to grow and also tiredness. This is because a lot of energy is used up by the heart as it works harder to do its job.

We were rushed to Starship on the 15th of January 2009.
On the 29th of January he had a risky Catheterisation procedure - Balloon dilatation of the aortic valve done.
Fergus is not currently in failure but he needs to be on medication to reduce the fluid building up in his lungs and liver.

We were in Starship for 3 weeks. From the 15th January - 5th February 2009.
Fergus had the procedure done to enlarge the aortic valve opening, which has helped to reduce some of the work his heart was doing. There is nothing more that can be done medically; all we can do is try to keep him well and growing. When he is around the age of 2 years old it may be possible to have a valve replacement procedure done, for both valves.


Fergus was born at full term; we had a planned home birth. Initially there was no indication of anything being wrong. He didn't gain weight as much as expected. A heart murmur was picked up at 6 weeks and again at 9 weeks by 2 different locum GPs. He started to be sleepier than you would expect for his age and also had started to vomit after feeds. On the 9th of January we saw our GP and were referred to Nelson Hospital.
On 15 January 2009 we went to this Paediatric Outpatients appointment. During the night before and that day Fergus's breathing had changed but we thought he may have a cold.
When the Paediatrician saw Fergus she was concerned so did obs, we were then taken to a treatment room in the children’s ward.
From there they put in an IV line and had an Echocardiogram (Echo) done. They could see something was very wrong with his heart he was admitted to Nelson Hospital and the doctor contacted the Heart specialist at Auckland Starship Children’s Hospital and it was decided we would be sent to Auckland. We were rushed to Starship that night by a Life Flight team.


On the 16th of January more tests were done at Starship Paediatric Intensive Care Unit (PICU). He had an Echocardiogram (Echo), an Electrocardiogram (ECG) an X-ray and bloods taken. From the x-ray they found he had pneumonia on the right lobe of his lung so he was started on antibiotics. He was put on Amiloride and Frusemide which helped to reduce the fluid building up in his lungs and liver.

The tests had shown some major problems and the doctors came to tell us their diagnosis. They said at that stage nothing could be done to fix Fergus’s heart.
We couldn't believe what they were telling us.
We told our families and friends just how serious the problem with Fergus's heart was, it was a great shock to us all.
Our other two boys were staying with their Grandma and Grandad, but this was the longest time away from us, I told them that we were at a hospital and that Fergus had a problem with his heart, in an attempt to prepare them for what might happen in the future, they both seemed to understand in their own way that we needed to be with Fergus.

I had been breast feeding but now I was expressing and fully feeding Fergus with breast milk via Nasogastric tube (NGT) and breast feeds, and even through this shock and stress managed to keep up with his needs.

It felt like a nightmare and I remember saying to Kerry when he asked if I wanted anything one day, "I want to wake up" his reply was "I know what you mean".

But I had made a conscious decision that I had to be strong and if there was any way I could help Fergus I would. He had been fighting to stay alive with out us knowing and if he could fight and stay strong throughout all this time, I would be fighting too and what he needed now was as much love and support as I could give him.

We were told that a surgeon was away and they would confer with her when she came back. We were moved to the Children’s Cardiac Ward 23b High Dependency Unit (HDU), where they worked out his feeds and meds. While he was in the HDU he started to give everyone the biggest smiles. We were moved onto the ward as he seemed to be more stable.
We wanted our other boys and family to come to Auckland so it was arranged that Kerry’s and my parents, my sister and the boys would fly to Auckland on the 22nd of January. They stayed at Ronald McDonald House which was a really amazing place.
Throughout this time he had many Echos, ECGs, X-rays and blood tests taken. Over the weekend we were told we could take Fergus out of hospital for short periods as the doctor said "we're looking at quality not quantity" this was so hard to hear.
So Saturday we took our boys for lunch at the domain and Sunday went to Ronald McDonald House so we could spend time with our boys and Fergus’s grandparents and aunty.
Over this weekend Fergus was stable but over the next three days he started to deteriorate, he found it was too much to take the volume of milk he had been and it had to be reduced, also his heart rate was very high reaching 180 at times during feeds.

On 28 January 2009 another Echo was done and the doctor told us that still nothing could be done. I came out of that echo carrying Fergus on the verge of tears, with Kerry following and made it back to the ward and Fergus's room before we had a good cry.
But the Doctors then had a conference with the surgeon who had returned and it was decided they would give us the option of them doing a risky Catheterisation Procedure - Balloon Dilatation of the Aortic Valve.
We had a meeting with the doctors and our family and decided to go ahead with the procedure with the understanding it was very risky and that he may come through the operation but have a worse problem or not pull through the operation at all. With this knowledge I told the doctors that if he didn't make it that I wanted Fergus to be a donor of any parts that they could use, so we may help another family with a sick child.

On the 29 January 2009 the Balloon Dilatation was done after the longest night and day of our lives first preparing to let him go and then the Good bye and Wait while the operation was done. Kerry and I had spent the night before with Fergus on the ward.
After the operation the doctor came up to tell us Fergus came through with the best outcome they could have hoped for. The operation had gone well. They went in through his neck via a cut to find his carotid artery, and used a 5mm, 6mm and finished with a 7mm balloon to open the aortic valve. During the operation he needed a blood transfusion. After the operation his blood flow had improved and his heart rate was lower.

We had to wait for him to come back to the PICU. He was ventilated over night but it was taken out at 9am the next morning and we moved to the cardiac ward HDU at 2pm. He had a temperature over night which was scary but it was treated and he was back on the ward by 10am the next day. He had amazed us all.
The people at Starship were incredible in the care and the support they gave us.


Life flight brought us back to Nelson and we stayed at Nelson Hospital from 5th - 9th February so we could meet the doctors and outreach nurses before we came home.
We have been home since then and Fergus continues to be doing well. He is gaining weight, is so much happier and developmentally is doing all the things you would expect for his age, although he gets tired more quickly.
He also has a greater risk of infection which we try to minimise by washing hands and reducing contact with people who are unwell.
He is on Frusemide and Amiloride once a day to help reduce fluid building up in his body.
His feed amounts change regularly. He wasn't managing all his feeds via bottle as he was becoming too tired so he has a Nasogastric feeding tube (NGT), through which most of his feeds are given. Throughout his first 6 months he has had a combination of breast feeds, bottle and NGT feeds.
He was fully fed breast milk that I expressed up until he was 6 months old. I continue to express as much as I can and top up with formula as his needs have increased. He has also started having some solids.
By giving him NGT feeds Fergus now has more energy to play and has started crawling!

We are so happy to still have our special little boy with us. He is a joy to us all. Every second we have with him is precious. His brothers adore him and he has been smiling throughout everything that has happened.
Thank you for taking the time to read about Fergus, a little fighter and our hearts delight.

Written 29-May-09 Updated 2-7-09