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If you would like to put snaps on the neonate gowns, please see the instructions below.
The neonate gowns use size 16 plastic caps, sockets and studs. The four pictures below demonstrate their placement.
Both outfits have a snap closure at the top of the back; the girl's dress has one shoulder snap each side and the boys t-shirts two shoulder snaps each side.
Dad's are often responsible for steering the ship when it comes to navigating the family's high-risk pregnancy and/or neonatal unit journey. They are also often the forgotten when it comes to peer support. We love this video made by The Telegraph cartoonist Bob, who captures the essence of being a neonatal Dad. Click the image below to take you to the video.
Come down and have a beer and a chat with other dads who have been through, or are currently going through, this unique and often challenging experience. Bring a friend. Dads who would also like to support Tiny Sparks WA are very welcome.
When - Wednesday 22nd July 2015 from 5.30pm
Where - Varnish on King, 75 King Street (basement), Perth
Hosts - Look for Mark and Daniel who will be wearing their Tiny Sparks WA caps.
Cost - Pay your own way (cash bar)
Update: Registrations are now closed.
As part of our holistic approach to supporting families, we are delighted to welcome Helen Heppingstone back to lead our July workshop on 'Take home techniques for relaxation: A yoga nigra style workshop'.
Helen runs her own successful yoga business, Yoga Masala with Helen, is a Trained Yoga Teacher. After qualifying with a Bachelor of Arts in Leisure Science, she has spent the last 30 years in the fitness industry including the last 6 specialising in yoga.
It is well understood that the trauma associated with high risk pregnancy and/or having a baby born premature or sick increases your chance of experiencing anxiety, post traumatic stress and/or post natal depression. Helen will help you with her knowledge and humour, guiding you through take home techniques for relaxation. The workshop will see you wearing comfortable clothing sitting and/or lying on a mat or blanket, learning to balance the body and connecting with the breath to calm the mind. The session will introduce you to the benefits of these techniques in bringing your system back into harmony, reducing blood pressure and reducing stress levels.
The workshop will be held in Subiaco on Tuesday 14th July 2015 at 7pm. It is open to all families affected by high risk pregnancy, premature birth or having a sick newborn and medical professionals working in this stressful environment.
Please note we recommend you wear comfortable clothing to the workshop. A mat and/or blanket will be provided for your comfort, or you may wish to bring your own.
Update: Registrations are now closed
The Neonatal Unit Care Package program has been a flagship support program for Tiny Sparks WA, providing over 110 separate families with a Care Package at a difficult time in their lives. Funded entirely from public donations through Tiny Sparks WA fundraising or individual donations of whole Care Packages, these Care Packages have been well received by recipients and hospital staff, with wonderful feedback offered by recipients, a sample of which is below:
"Loved it at a time when nobody knows what to say or give as a gift"
"It made me feel very supported"
"It was an awesome gesture and really made my day"
"They are an amazing thing to receive, I will be donating"
We are now thrilled to announce a significant expansion of the Neonatal Unit Care Package program!
As of 1 July 2015 the distribution will increase to parents of babies born up to and including 1500g which will capture a significant number more families!
The expanded program has the potential to reach over twice the number of families in the next 12 months than the program has since its commencement in May 2014!
The original Neonatal Unit outfits that our industrious volunteers have been creating have been sized to approximately 1.2kg, therefore, the expanded Neonatal Unit Care Package program, which will reach babies born up to 1500g, requires a new size of outfit!
Newly posted on our Knitting and Sewing page are additional girls and boys patterns in 'up to 1.6kg' sizing. These have been listed under the 'low stock' heading as they are brand new - if you are able to assist in creating outfits in this new size and building our supplies we would be very grateful!
Links to full instructions, pattern downloads and FAQs are all available from our Knitting and Sewing page.
We would like to thank all donors past, present and future for allowing the Neonatal Unit Care Package program to be a success and allowing its expansion! We would also like to extend a massive thank you to the key staff at KEMH who distribute all of the Care Packages and who are the crucial link between Tiny Sparks WA and the recipients.
Yes, we want to keep expanding! Tiny Sparks WA acknowledges that it is not only premature babies that experience the Neonatal Unit, and as such, we are looking towards future expansions to other hospitals that will cater to the families of newly born babies requiring long term Neonatal Unit care due to illness or other reasons. Watch this space!
Full details of all Care Package programs are available on our Care Package page.
Guest blogger Manda T writes of her son Solomon's Story with Congenital Diaphragmatic Hernia (CDH). See bottom of blog for a definition of CDH.
When my son was born he wasn't that lovely shade of pink. He was grey. He didn't cry. He was lifeless. And the birth suite was so quiet, you could hear a pin drop. He was born on 23rd June 2014 with Congenital Diaphragmatic Hernia (CDH).
Finding out at our 20 week anatomy scan was a huge shock. Solomon was our 4th baby. Our previous three, all girls, were born perfectly healthy. To this day, I'm convinced his condition is my fault. Mothers guilt is an awful thing.
An hour after Solomon was born
Glenn's daughters meeting Solomon when we were told he was on maximum support
The morning after Solomon was born his Dr stopped us in the corridor to his bed. The words "end of the line" and "maximum support" are all I can remember. Or choose to remember from that conversation. He was on the high frequency oscillator, nitric and many different medications. He didn't respond well to being touched. Cares sent him into a tizzy. The numbers went down and up, up and down. Days passed. He was no closer to being transferred for surgery. My husband and I stayed in the parents room in the NICU. Only the parents of the sickest babies stay there.
On day 7 his doctor took a chance and switched him to the conventional ventilator and it worked! Day 8 saw him be transferred to the children's hospital. Day 10 he had his repair. 7 or so hours went by so slowly. I caught up on sleep. My husband paced the room. Thankfully all went well. His hole was so large it required a patch to close.
The rest of our journey seems like a blur. Though at the time I just couldn't wait to have our son home. He fought so so hard to be here and stay. He is my absolute hero.
Solomon was 16 days old when he started on tube feeds.
He was 17 days old when they switched him from the conventional ventilator to CPAP. That was also the first time we heard him cry.
At 18 days old, we had our first cuddles.
After 22 days, Solomon was switched to hi flow oxygen
On day 25, Solomon was transferred back to the hospital he was born at. On the way, the transfer team stopped in the corridor so he could meet his sisters for the first time.
Being transferred to PMH
Solomon after surgery
Cuddles with Mum
Cuddles with Dad
Day 29 saw Solomon taken off all breathing support. For the first time in his life, he was breathing unassisted.
One tube to go!
The days following were filled with trying to get him to take full bottle feeds. Easier said than done. Solomon had severe reflux and would vomit at every feed. Eventually medication helped. He started gaining weight and taking full feeds.
On August 15th 2014, day 53, my 31st birthday, Solomon came home. He will forever be the best birthday present I will ever receive.
In two weeks Solomon will be celebrating his first birthday. I don't know how I'm going to handle that. Feelings have a funny way of creeping up on you. I have days where I feel fantastic and days where I want to crawl into a ball and cry. I still wonder why me? Why us? Why our baby?
First family photo - Image Credit: Samantha May Photography
Once you're the parent of a CDH baby, your life is never the same. You watch your baby fight for their lives. Literally. While the scar my son bears shows the hell he's been through, I have no physical scars from my CDH journey. Though my emotional scars are cut just as deep. You cannot go through this experience unscathed. And you won't come out the other side the same. But with the love and support from our CDH Australia family, I know I'm not alone. And that makes it just that little bit better.
Definition of CDH - Source: CDH Australia
The diaphragm is a muscle that helps us to breathe and separates the chest cavity from the abdominal cavity. It develops in early foetal life. Congenital diaphragmatic hernia is the absence of the diaphragm or, more commonly, the presence of a defect in the diaphragm. It can occur on either the left or the right side but is most common on the left (80%).
As there is a defect in the diaphragm, the abdominal contents including the stomach, intestine, liver and spleen can be displaced into the chest cavity. CDH is usually an isolated condition, although other congenital anomalies, most commonly cardiac, may be associated and influence the prognosis.
Since these organs are in the chest cavity and not where they are supposed to be, the lungs have insufficient space to grow normally and are therefore smaller than they should be. The determinants of survival include the degree of underdevelopment/undergrowth of the lung and the supplying blood vessels with associated pulmonary hypertension, as well as the gestation of the baby.
