A Look Back - June 2014

Editorial

The highlights of June were the announcement of our first workshop for parents, a grant to Parents of Prems and the launch of our Messages of Thanks page. The workshop and grant would not have been possible without the support of our community who took part in HBF Run for a Reason, thank you!

Workshops will be held monthly on various topics that we think will interest our community.  Our first workshop on the 30th July is entitled 'Issues facing 0-5 year olds born with respiratory distress'. Please click here to register.

Parents of Prems provide care packages for parents of premature babies.  The grant will cover approximately 20% of costs for the next six months to ensure all parents of babies born micro or extremely prematurely at King Edward Memorial Hospital receive these wonderful care packages.

Our 'Messages of Thanks' page was launched with a beautiful poem of thanks contributed by Krystle L. We would love you to keep sending us you messages so that the community understands the depth of our gratitude. You can submit your thanks here. 

Our Toddler Tuesdays activities are in full swing now, so if you are keen for ideas to keep them active. take a look at the blog here.

Community Conversations

Facebook has seen us jump to 750 likes, and the community is taking advantage of the forum to share. Here are a few of those conversations.

Donations of Premmie Clothes

Mums have generously offered donations of premmie clothes to the community. If you would like to donate or be on the list for donations, please do not hesitate to contact us. Alternatively, the Women and Infants Research Foundation appreciates donations of clothing for their Op Shop at King Edward Memorial Hospital. 

Sharing Updates and Memories

Families are starting to share photos of their little ones growing up. A family also shared a touching celebration of their baby boy who is no longer with us.

Family and Friends - Providing Support

We asked for input for a new page for our website "Family and Friends - Providing Support".  Theresa M said "I know for us having my family rally around and take over the smallest tasks like walking the dogs and leaving us cooked dinners, cleaning the house etc was a big help because it freed us up to be with our baby for longer periods of time". We would love more of this feedback as we develop our page. Please email admin@tinysparkswa.org.au with your tips and ideas.

Thanks for the Support

Thanks to Bunnings Claremont for supporting our Bake Sale on the 7th June. Although shoppers seemed few and far between that day, we appreciated the opportunity.

Coming Up

31st July - Workshop: Issues facing 0-5 year olds born with respiratory distress

Dr Veena Judge presents a workshop entitled 'Issues facing 0-5 year olds born with respiratory distress'. Dr Judge is a very experienced and well respected paediatric respiratory and sleep physician. She is looking forward to tailoring the workshop to suit the attendees concerns and background. You are welcome to list those concerns as part of the registration process. Click here to register.

8-10th August - PBC Expo

The annual Pregnancy, Babies & Children's Expo is on at the Claremont Showgrounds from August 8 to 10.  The expo is a fun day out for the entire family with plenty of free entertainment and loads of interesting vendors.  You can get your free tickets here.

We will be having a stall at the expo and are looking for volunteers who may be able to assist in the running of the stall. If you are interested in volunteering, please submit your interest here.

20th August - Workshop

Topic to be advised.

31st August - Chevron City to Surf

On the 31st of August we will have a team in the Chevron City to Surf.  You can find out details on the run/walk here, and join our team to fundraise here.  Each adult participant will receive a Tiny Sparks running cap.

Charlie's Story

Guest blog post.

My name is Eloise Thomas and I live in Perth WA. My ex husband and I found out that we were expecting our first baby in November 2007, just after our first wedding anniversary. We were absolutely thrilled and excitedly anticipated his due date of the 27th July. Throughout my pregnancy I had early pre-eclampsia, very high blood pressure and polyhydramnios. I was hospitalised for the final four weeks of the pregnancy on and off and had two amnio-reductions as I was producing way too much amniotic fluid and there was a chance that bub was having a “blockage of some sort”. We were told that “something was wrong”, but no one could figure out exactly what was wrong because the ultrasounds were showing a healthy baby who was growing well and not showing any signs of distress. I had a CTG every day for the final fortnight and bub wasn’t reaching the levels that were required, so I was booked in to be induced a week later on a Thursday.

Charles William Thomas (Charlie) was born just before 6am that morning by emergency c-section. My waters broke naturally at 2am and there was so much amniotic fluid, I felt like my organs were falling out. It was frightening to see that much fluid coming out of oneself (too much information, sorry). I think I even apologised to the midwives, who found that rather amusing as “it is what we do everyday” was their answer. I will never forget seeing our beautiful tiny little boy for the first time. He was brought up to my face so that I could see him and rub cheeks with him, but before I knew it he was rushed out of the room and the rest is rather foggy.

My ex-husband was absolutely amazing and went through so much while I was ‘fuzzy’ from the epidural and all of the other medication that I was on. All I remember from that day is being wheeled into recovery and immediately calling my parents and sister to share the news and to SMS every other person in my phone to tell them our joyous news. I had no idea what was ahead. I remember waking up a few hours later in my private hospital room when Charlie was brought in. He was attached to all sorts of different tubes, was lying on his stomach and inside a huge humidi-crib. He had at least five people around him, two of whom were Doctor’s, and they were rushing him straight to Princess Margaret Hospital where he required emergency surgery. I found out later that this was my opportunity to say ‘goodbye’ to him if the surgery was not to be successful. I don’t remember much of this, only what my ex-husband told me.

I have never been a Mum before and didn’t know what ‘normally’ happened after you have a baby.....did your baby stay with you? I’m sure that is what happened. Are all babies taken away for a while? I did know that something wasn’t right from the beginning but everyone was keeping me informed on a ‘need to know’ basis, rather than provided me with all of the information that perhaps I wasn’t ready to receive right there and then.

Charlie born full term with Tracheo Oesophageal Fistula (TOF)

Charlie born full term with Tracheo Oesophageal Fistula (TOF)

Our Charlie was born a TOF baby. He has Tracheo Oesophageal Fistula, where his trachea and oesophagus were joined and leading to his lungs, so he had no tube going to his stomach and he could not swallow (this explained the excess amniotic fluid) and he had breathing difficulties. My little angel was rushed to the children’s hospital only a few hours after he was born. I saw him four days later. He was kept in the Neonatal Intensive Care Unit at PMH for his first ten days and we will never forget that time. A frightening time where we had no one there to support us and let us know that yes, our journey was a difficult one and that it was normal for us to be feeling like we were drowning and so completely helpless. It was a very lonely feeling for the both of us.

Charlie was tube fed for the first ten days of his life, so feeding was a huge obstacle that took a long time and getting him used to bottle feeding was a huge challenge. Breast feeding was too distressing for the both of us, so after much painful deliberation, I chose to put him on formula. He also had severe reflux, so required a thickened feed.  I begged my OB to discharge me from the hospital ASAP and we went to live in the parents quarters at the NICU to be close to our boy. I was called into the NICU every three hours to feed him, express my milk and then return to the parents wing to catch up on some sleep, all while in agony due to getting an infection in my caesarian scar. My body didn’t respond well to anything at this time. Every day I could watch him, touch him but could not hold him. He had so many tubes attached to him, it took one of the NICU nurses about 20 minutes just to change his nappy. He was so small and sickly looking. It was very surreal.

After 6 days his wires were slowly coming off, we were trying to establish feeding and we were able to hold him for the first time. What an occasion that was. One that I will never forget. After the 10th day, Charlie was transferred back to the original hospital where I had him (SJOG Subiaco) where he remained in the Special Care Nursery under close watch until we could establish feeding. I hired the Mothercraft room, right across from the SCN where I learned how to look after him and feed him, under the close watch and assistance of the amazing staff there. And after three weeks, we were allowed to go home.

From when we got home to when Charlie was five months old, we nearly lost him nine times due to ‘death spells’ where his trachea would collapse (due to feeding/crying and the normal things babies do). I was too afraid to put him for sleeps in his bassinet, so he would sleep on my chest during the day and we had him attached to a monitor for him to sleep in our room during the night. We couldn’t let him cry, otherwise he’d get distressed and have an ‘episode’ where he would struggle for breath and go blue. We had him attached to the heart monitor then at all times and had oxygen tanks on standby in case he required some help. We had eight hospital stays in this time, so that his medical team could monitor him. I couldn’t count the number of doctors, nurses, specialists etc that we saw and each was equally surprised when they saw his hospital ‘portfolio’ because it seemed to always be the thickest in the pile for a child so young. 

Charlie was put onto reflux medication and his feeds were thickened more, which helped a lot. He had regular appointments every month so that his medical team could keep a close eye on him and we still have yearly appointments with his team and he turns 6 next month. He has had appointments for surgical, neonatal general, monitoring, speech pathology, audiology, palette (he has a sub mucus cleft palate and a double uvula), physiotherapist and respiratory. He only had two dilatations (incredibly fortunate for a TOF kid), where they insert a rubber knitting-needle type object, dipped in oil and put down his throat right down into his tummy to ensure that the oesophagus remains stretched and open, to prevent any obstructions to add to his swallowing difficulties.

IMG_3555.jpg

He wasn’t able to eat normal foods for a long time as his oesophagus was not as ‘coordinated’ as it should be, so he was on mashed up food for a long time and I may have done a happy dance in Coles when he was able to eat his first Milk Arrowroot bicky at 2 without choking. And we have been on a steady road ever since. His last episode was two years ago and Charlie is now a robust, strong and fast growing little boy who turns 6 next month. He has had no other health issues, is eating me out of house and home and loves school. After such a rough start, he has really shown us how amazing he is and we are so incredibly proud of him.

You may also be interested in these stories :

Tongue Tie and Upper Lip Tie

Tongue Tie and Upper Lip Tie

HBF Run for a Reason

HBF Run for a Reason

WORKSHOP - Issues facing 0-5 year olds born with respiratory distress

WORKSHOP - Issues facing 0-5 year olds born with respiratory distress

Toddler Tuesdays

Toddler Tuesdays

Toddler Tuesdays - Week 5 of the 12 Weeks of Winter

We are loving all of the positive feedback we have been receiving, thankyou!  Welcome to week 5 of ‘Toddler Tuesdays’.  You can find more of our ‘Toddler Tuesdays’ activities here.  This week’s activity is ‘We’re Going on a Bear Hunt’.  With inspiration taken direction from the ever popular children book by the same name.  If it’s not one you’re familiar with please check it out from the library, it’s loved by many.

You will need -

  1. A container with a small amount of water.  You may like to use a sink if your child has safe step access.  This will be your river.
  2. A blanket to lay on the floor, this will be your mud.
  3. A dark wardrobe or walk in robe would be perfect, this will be your forest.
  4. A small table, coffee table, toddler table or even a kitchen chair would work well.
  5. A further blanket to cover the table and make your cave.
  6. A stuffed toy who will play the part of the bear.
  7. Optional - A copy of the book ‘We’re Going on a Bear Hunt’.

Instructions -

Before you introduce your child to the activity prepare each of the zones, river, mud, forest and cave complete with bear.  If you have a copy of the book you may even like to read it to your child.  Choose a part of your home as the starting place, maybe the front door or your child’s bedroom.  Get them excited, ‘We’re going on a bear hunt!  We’re going to catch a big one!’  Then lead them to the first zone.  ‘Uh-oh, a river.  We can’t go over it, we can’t go under it, we’ll have to go through it!’  ‘Splash, splash, splash!’  Encourage your child to have a little paddle in the water you’ve provided.  Continue on with each of the zones, mud, squelch, squelch, take your shoes off and be really dramatic pulling up your pants and squelching across the blanket.  Next you’ll move on the the forest and stumble, stumble your way through.  Now you find the cave, tiptoe tiptoe, ‘What’s that?’  Build some suspense as you describe the bear (stuffed toy) to your child.  Then shout ‘Quick! Back through the forest, back through the mud, back through the river.’  All the while you are moving quickly back through the zones to your starting place.  Once back to the start have a hug and a laugh.  Your child might like to repeat this activity again, immediately.  Encourage them to take a favorite teddy with them.  Encourage use of the appropriate language along the way, even if they are only saying some of the key words.  Do not leave your child unsupervised with the water you have set up for the river.

Focus -

As this activity is based off a book it has a beginning, middle and end, excellent for encouraging children to create their own narrative about an event.  Many children will already be familiar with the storyline and by acting it out you are encouraging their imagination and creative play.  There is a lot of rhyme and repetition in the story which helps to build language.  Your child is also practicing their gross motor skills as they walk, tiptoe or crawl through each of the zones.

If you try out one of our activities please let us know what your toddler (and you) thought.  Feel free to leave a comment here or post an image or comment to our Facebook page.  If you enjoy the activity we would encourage you to share this post with your friends.

You may also like these stories :

WORKSHOP - Issues facing 0-5 year olds born with respiratory distress

WORKSHOP - Issues facing 0-5 year olds born with respiratory distress

A Working Mum - Is it worth it?

A Working Mum - Is it worth it?

Back to (Paid) Work

Back to (Paid) Work

Pregnant with Blake

Pregnant with Blake

Poem of thanks

Guest blogger - Krystle L

This is a poem I wrote for all the amazing staff that helped our baby girl Summa Rose when she was born 23 +5 weeks in December 2011 in KEMH. She is now a beautiful healthy, perfectly normal loving little toddler xx

Sixteen weeks of joy,
Sixteen weeks of tears, 
Sixteen weeks together, 
Memories we will remember for many years,

Our princess summa rose, 
Was a fighter from the start,
Sixteen weeks to early ,
But that couldn't keep us apart,

Mummy knew that she was strong,
And never left her side,
Daddy held her tiny hands,
And prayed to god up high,

Prayed to keep her safe from harm,
And bless her night and day,
Prayed for strength and courage,
And all our fears to take away,

I could have searched high and low,
And never could have found,
A better daddy for my girl,
To keep her safe and sound,

And to my princess summa,
I love you with all my heart,
You are a blessing from Jehovah,
So much strength from the start,

So many tiny hands and feet,
Come rushing through your doors,
Each one precious and unique,
And battling with their own wars,

We thank you all from the bottom of our heart,
For all your help and knowledge,
Watching you work together as a team,
Has truly been a privilege,

You picked us up and made us strong,
When days were dark and grey,
And reminded us that soon to come,
Were sunny and brighter days,

Days of laughter, cuddles and kisses,
Days of just pure fun,
Days at home with mum and dad,
With the patter of tiny feet too run,

Now it's time to say goodbye,
This long journey has come to it's end,
You are no longer doctors or nurses or staff,
We're blessed to call you our friends!!

Nothing can ever repay the gratitude we feel to those who make a difference in our lives during a traumatic time, but a message of thanks goes a long way.  We would love you to join our community in sending a message of thanks to our WA hospitals, staff, family, friends, or whomever made a difference in your journey.  You can do so on our 'Messages of Thanks' page here.

You may also like these stories :

Blake's NICU Journey - Breathing and Living

Blake's NICU Journey - Breathing and Living

WORKSHOP - Issues facing 0-5 year olds born with respiratory distress

WORKSHOP - Issues facing 0-5 year olds born with respiratory distress

PTSD - One Woman's Battle

PTSD - One Woman's Battle

Pregnancy, Babies & Children's Expo 2014

Pregnancy, Babies & Children's Expo 2014

Toddler Tuesdays - Week 4 of the 12 weeks of winter

Welcome to week 4 of ‘Toddler Tuesdays’.  You can find more of our ‘Toddler Tuesdays’ activities here, we hope you are enjoying them.  This week’s activity is introducing playdough mats.

You will need -

  1. A print out of our playdough mats which can be found here, or your own selection of playdough mats.
  2. Page protectors to put your printed playdough mats into, or you may choose to laminate them.
  3. Playdough.  Our favorite home made playdough recipe can be found here.

Instructions -

Have everything prepared at the kitchen table or a toddler table before introducing the activity to your child.  Using playdough assist your child to make food for the plate, add features to the face, candles to the cake and plants or vegetables to the garden.  Use key phrases like, ‘roll it’ and ‘squash it’ as appropriate.  If you have more than one colour playdough available you may like to comment on colour, eg ‘green peas’, ‘pink candles’.  If your child plays with playdough often they may want to do their own thing, sculpting, cutting etc.  We would encourage you to sit with your child and model the use of the mats so they get the idea.

Focus -

Throughout the activity there are key phrases that you can use to encourage language development.  If your child is already speaking this activity is a great opportunity to expand on that, eg ‘My face needs a?’  ‘What fruit would you like on your plate?’  ‘Can you help me count the candles?’  ‘Let’s sing Happy Birthday.‘  Even if your child is not engaging in this discussion answer your own questions modeling and imprinting the correct language and grammar.

Using playdough helps to strengthen all of the muscles in the hands and fingers which will help to refine fine motor skills.  Rolling and positioning small pieces of dough helps to practice these skills.  Building hand strength and co-ordination is essential when moving into the preschool years as it will assist with pencil grip and make writing easier.

If you try out one of our activities please let us know what your toddler (and you) thought.  Feel free to leave a comment here or post an image or comment to our Facebook page.  If you enjoy the activity we would encourage you to share this post with your friends.

You may also like these stories :

Babywearing

Babywearing

Tongue tie & Upper lip tie

Tongue tie & Upper lip tie

Workshop - Issues facing 0-5 year olds born with respiratory distress

Workshop - Issues facing 0-5 year olds born with respiratory distress

Twins!

Twins!