Westmead NICU Twin Crib

We need your HELP! Please help us raise $2500 needed for a twin crib in honour of our daughters Aisha and Aaliyah for new multiple families to use at Westmead Public Hospital Neonatal Intensive Care Unit. 

3 years ago we were blessed with the early but safe arrival of Zachariah and Yasminah's little twin sisters Aisha Ann and Aaliyah Ann. Born at only 31+5 weeks old 

Aisha ~ 16/12/09 ~ 11:53pm~ 1554g ~ 41cms ~

 

Aaliyah ~ 16/12/09 ~ 11:55pm ~ 1730g ~ 41.5cms ~ 

 

 

We spent a very long 4 weeks in Neonatal Intensive Care at Westmead Hospital. We anxiously watched and waited for our girls to be reunited outside of the womb. It wasn't until week 3 that they happened to be in adjoining rooms in the NICU and one of our lovely nurses helped put them together for the very first time! She gently carried Aaliyah attached to all her wires and monitors through the adjoining room’s doorway and placed her next to Aisha. The moment they were next to each other they smiled and nuzzled into each other. This brief 30 seconds if forever etched into my heart. It was magical!

That was a turning point for Aaliyah, who up until that time was a little further behind than Aisha. Her condition improved and one week later both of our girls were discharged home 4 weeks earlier than predicted by their caregivers. I honestly believe it was from this single moment. 

Westmead at the time didn't have a twin crib in the NICU and ever since that moment we have wanted to get one for Westmead, but we need your help to make our dream a reality. 

We are asking for your support to make a donation towards purchasing this very valuable piece of equipment for the NICU. We want to help another multiple family have this same opportunity to capture their premmie twins reunited in the NICU.

A twin crib for use in the NICU encourages co-bedding. Cobedded multiples can see, touch, and smell each other at all times, just like they could before birth in the womb. It allows the babies to share space together and they can even have them positioned as they were in the womb. Feet to head, head to head, back to back - however they were placed. 

Research has shown that heart rate and other stress cues reduce. Cobedded twins seem less irritable than other twins. When twins sleep together, they coordinate their sleep/wake cycles and have less stress and they seem to gain weight better than multiples that aren’t co-bedded. 

Twins are used to being together - so when they are in a situation such as the NICU where holding time is limited - giving them the comfort of companionship of their sibling can increase their chances of survival and promote happiness. Cobedded twins seem to have happier parents, fewer episodes of bradycardia, better thermoregulation, and lower oxygen needs. 

Please make a donation, every amount big or small can make a huge difference. 

To learn more about Aisha and Aaliyah’s journey please watch

http://hopelightlovehappiness.blogspot.com.au/2011/12/aisha-and-aaliyah-our-rainbows-at.htm

NICU Graduate Visitors

The moment you finally get to take your premature baby or in my case babies home from NICU is a very exciting time, but can also be overwhelming being away from the full time care of a nurse in sterile, hospital environment. As parents we want nothing more than to protect our children. 

Babies who have been born premature and spent time in a neonatal intensive care unit (NICU) or special care nursery (SCN) are often at higher risk of getting an infection than other babies who are born full term. It is often recommended to limit visitors for the first few months, also taking extra special care of where you take your baby.

Family and friends will be eager to meet your new baby and may not understand your concerns for your baby’s ongoing health and wellness. You may like to adapt the following words to suit your circumstances, to help explain to friends and family the importance of your premature baby’s growing immune system.

We are thrilled that after spending X weeks in hospital we have finally been able to bring our precious little baby home! We are very grateful for your love and support whilst in the NICU and know that you may wish to visit (insert parents and child’s name here).We kindly ask for our privacy over the coming weeks as we adjust to finally becoming a family within our home.
(Insert child’s name here) immune system is extremely vulnerable,  and his/her doctors have advised we will need to be extra careful with visitors as a small infection such as a cold could land him/her straight back in hospital.
We hope you understand and appreciate your love and concern and look forward to introducing (insert child’s name) when his/her immune system is stronger.

My twins Aisha and Aaliyah coming home after spending 4 weeks in NICU. The photo is a bit blurry but it's the only one that we have and one that we treasure.

Please talk to your doctor or health care provider about their recommendations once taking your baby home. Most doctors will recommend

• Limiting the amount of visitors to your home until your baby is older and stronger
• Ensuring that if visitors are touching your baby that they thoroughly wash their hands
• Avoid taking your baby to crowded places, such as shopping malls and grocery stores.
• Limiting adults or children who are sick, have a temperature, or have been exposed to an infectious disease near your baby or in your home
• Do not allow people to smoke inside your home, or near the baby

The subject matter provided in these articles is strictly for informational purposes alone and should never be used in the place of a doctor’s advice. Please ALWAYS contact your doctor if you ever have questions or need advice in any area where medical advice is needed or medication is suggested.

Journals For June

Yasminah's Gift Of Hope Journals are donated to Maternity and NICU wards in public and private hospitals around Australia for families who experience miscarriage, premature birth, neonatal loss, stillbirth, infant loss or the diagnosis of a congenital abnormality during pregnancy.

WHAT CAN YOU DO TO HELP?

Either donate a journal or donate $2 for us to purchase a journal in June

*Journals can be blank or lined inside, spiral or case bound
*You can donate a journal you decorate OR send them to us plain and we will decorate them ready to donate to the hospitals

Yasminah's Gift Of Hope is endorsed by the Australian Tax Office as a Tax Deductible Gift Recipient. All donations over $2 are tax deductible.

Donations can be made by Visa, Mastercard, Bpay or Australia Post Billpay through the Everyday Hero website
http://www.everydayhero.com.au/journalsforjune

OR by Direct Bank Deposit
Yasminahs Gift Of Hope
BSB: 012556 Account Number: 905083525
Please ensure you send an email to fundraising@ygoh.org.au with your name, address and contact phone number so we can issue you with a tax receipt if donating by Direct Bank Deposit

Journals can be donated in memory or honour of a child/ren. We place very special Donated in Memory/Honour of Stickers to the back of each journal so the family who receive them know they are not alone. When sending the journal/s please ensure you include a note with the name/s and/or DOB of the child/ren you would like the journal donated on behalf of.

All journals can be posted to

Yasminahs Gift Of Hope
PO Box 17,
Merrylands, 
NSW 2160

We would appreciate you sharing this event with your friends and fans

With Hope, Light, Love and Happiness

Yasminah's 3rd Birthday Memorial March

On Monday 26 March 2012, Yasminah should be turning 3. Her family should be celebrating the life she had lived. Instead, they will be reflecting on the impact she has had on so many people’s lives.

On 26 March, we will be holding the inaugural Yasminah’s 3^rd Birthday Memorial March. The concept is simple, we want to raise awareness about pregnancy and infant loss, stillbirth, congenital abnormalities and premature birth. In Yasminah’s memory, we will work to educate more people about the heart ache that so many families across the world suffer.

Through the March, we will attempt to show people some of the pages who support the work that Yasminah’s Gift of Hope does, make them aware of why we do the work we do, and hope that they will in turn, share this information with their friends and family.

If it was up to us, Yasminah’s Gift of Hope wouldn’t exist. We wouldn’t be doing the work that we do. But while families suffer through the loss of their child, struggle through the diagnosis of a congenital abnormality, or ride the rollercoaster of the NICU after premature birth, we will work to break the silence, raise awareness and provide support so no family has to go through it alone.

Each year in Australia approximately 58,000 couples experience reproductive loss:
About 55,000 experience early pregnancy loss, 1,750 babies are stillborn and about 900 babies die in the first twenty-eight days after birth – how are you going to make a difference?

Here is a complete run down of the details:

Start Date and Time - 10am AEST Monday 26 March 2012
End Date and Time - 10am AEST Thursday 29 March 2012

To complete the March:
1. You must be a liker of Yasminah's Gift of Hope.
2. You need to go to the Yasminah's Gift of Hope Facebook page and go to the 'Yasminah's 3rd Birthday Memorial March Album'.
3. From the album, you need to visit each participating business in turn and 'like' their page.
4. Marchers will need to like the status about Yasminah as they visit each page.
5. Marchers must then search through the albums on each page to find the picture with a statistic or information about Yasminah on it.
7. You need to "collect" each of these statistics and enter them into the following link - https://promotion.binkd.com/Enter.aspx?id=2993
8. Once you have visited each page and liked all the statuses, you can submit your answers.
9. Whoever collects all the statistics and submits them in the required time (before 10am Thursday) will then be in the running to win the big prize. The big prize will be chosen through random.org. Everyone will be assigned a number based on when we receive their submission and this number will then decide the winner.
10. When you have completed Yasminah's 3rd Birthday Memorial March, please share this status "Today I am celebrating the life of Yasminah with Yasminah's Gift Of Hope. Will you help to break the silence? Visit Yasminah's Gift of Hope to find out how" tagging 'Yasminah's Gift Of Hope' Facebook Page.

Guest Post ~ Children Having Infant Limb Deficiency ~ CHILD ~ Katherine Moffett

This is my very first guest blog, of what I hope will be many more. My dear friend Katherine Moffett. I will always remember when we first found each other online, I was about 25 weeks pregnant with Yasminah. It was so wonderful to find someone who also had a child with a congenital limb difference. It gave me hope that everything would be OK and it didn't matter that Yasminah had a limb difference, she would still be able to do amazing things and would always have the support and strength of her family and friends. I still remember when I had to tell Kath she had passed away :( It was heartbreaking as she had offered to pass along some of Sienna's clothes. I knew even before I had Yasminah that I wanted to help other families in some way. Katherine was the person that helped me get all the paperwork and charity started as she had only recently done it for CHILD. Thank you Kath for being the most amazing, supportive friend a girl could ever hope for. I will continue to help with CHILD wherever I can as it will always have a place close to my heart and all the amazing friendships with the many different CHILD families I have made along the way. Don't forget that you are amazing and the person who inspired me to start something in Yasminah's memory, for that I will always be grateful ♥ Bec x x


This was Katherine's post on our Facebook page last week

Katherine

I was sitting here thinking about the past three and a half years for me. All the amazing people who have touched my life thus far. Rebecca and I met after she found out about Yasminah's differences as I run Children Having Infant Limb Deficiency - CHILD. We spoke here and there, I would try and shed light on the situation because I don't like parents thinking their alone when something like this i...s diagnosed. I remember when I found out about Yasminahs passing. I was sitting in my loungeroom in Prestons, Sydney. And I read a message Rebecca had sent me. I started to cry. She was the first little baby Id had the honour of being involved with who had lost her life. So when time went on and Rebecca said she wanted to start Yasminahs Gift of Hope, I was more than happy to help with whatever I could and I'm sure you remember Rebecca, the paperwork was a nightmere LOL....But Id just like to express my absolute love and admiration for one of my closest friends Rebecca Aziz. I have the utmost respect for her and all the work she puts in. Literally! Blood sweat and tears!! She is why I still do what I do, she is my inspiration. When my ex husband left me because we had a child born with disabilities it was my friends who picked me up and who encouraged me. In the last week alone, Rebecca has helped me so much, twitter, the blog, I just cant express how important you are to all of us Bec and I pray that a big tycoon with millions of dollars comes up and says "Here love, $1,000,000 to make a difference"! Love you xxx

Pregnancy can best be described as riding a very intense rollercoaster of emotions. Some days your up, others your way down. Other times you feel like your going around in circles and the weeks and months will never end.

But once labour is over, or the caesarean section is complete and your holding your newborn for the very first time, touching her soft skin, adoring her face, it all seems worth it. Picturesque isn’t it? Sounds perfect. Well the fact of the matter is, it’s not always like this.

This is her story, it is one of extreme lows, mounting highs and all the in-between.

Siennas pregnancy seemed normal. Besides some crazy dreams about her being born with dwarfism, a reoccurring dream I had at least five times and some bouts of anxiety my pregnancy was what I would call perfect.

Ultrasounds out of the way, we were told the baby was healthy, ten fingers, ten toes, I was content and anxious to meet my little bundle. When she was born though she was whisked away to the Neonatal Intensive Care Unit of the Hospital. I saw her for one minute after she was born and she was tightly wrapped, so tight in fact I could not unwrap her blankets and any attempts to do so were squashed.

Three hours after her birth, the news was broken to me that my perfect little girl, with ten fingers, ten toes and a button nose, wasn’t in fact what I'd expected. I was confronted with a very little baby, her arms were significantly different lengths, her shoulder on the right was smaller than the left, her right elbow was fused and could not be bend and the biggest shock of all, she had no thumbs. Eight little fingers is all she had. She had major upper limb issues, a heart condition and scoliosis of the hips.
The weeks and months that followed were tough, trying to adjust to life with a child with such different needs to what I would have called back then a normal baby.

My marriage broke down. The stress was all too much and I found myself attending the hospital appointments alone, dragging a three year old with one hand while trying to push a pram with the other.

Over the past three and a half years, I’ve tried to make Siennas life as normal as possible. She never misses out. She is always involved. Never left behind is my family motto. We have all pitched in to make sure my children’s lives are as unaffected by all of this as possible.

But what do you do when a child, who is around seven years old, decides to point out that he thinks your pride and joy, your little princess, is a “freak” and is “scary”. How would you deal with this? It’s so easy to dish out advice to other parents about how to handle things like this but when it actually happens to you, it hits you like a ton of bricks.

My answer, educate the community. Teach your child that staring at someone who has a disability, or any difference is not polite. Calling someone a freak, scary, ugly, fat, four eyes, none of it is right. Sticks and stones may break my bones, but I’m telling you words do hurt. How can I protect my daughter from the big bad world when all I want to do is hide her away and protect her? I’m asking parents all over the world, to do what’s right and educate your children. Teach them what is right from wrong. My daughter didn’t ask for this. She didn’t ask to be born like this. Lately she has been asking me why she can't have ten fingers like mummy. And also why she has to keep going back to the hospital.

I am now the sole parent to three amazing children. All of whom adore and love each other unconditionally. They are all protective and respectful of each other.
Please, help me make the world an easier place for children like my daughter to feel safe and not judged because of their physical appearance. Bullying is wrong! Teasing is wrong! Poking, prodding and pushing are wrong whether the person is disabled or not!

I'm doing my best to educate the world. I started a charity in 2009 called CHILD. Children Having Infant Limb Deficiency. To date I have made contact with over 500 families from all over the world whose child has either been born with a limb difference or has an acquired limb difference (amputee). Our children are all amazing human beings. And I am trying to help them get the confidence they need to face the world loud and proud!


I’m normally a very calm and placid woman but I need to stand up and fight for the rights of my daughter now and those of other children with any type of disability. Bullying is wrong; educate yourselves and your loved ones. Bullying is ignorance and I for one will not tolerate it anymore.

Katherine Moffett

To learn more about CHILD and support Katherine's work please visit www.childorg.net.au and follow them on Facebook

I wish I may, I wish I might, dream about my angel tonight...

Do you dream? Do you ever remember your dreams? Do you understand what they mean?  Do they mean anything?

Two nights ago my husband and I both had the same dream, we were watching our youngest daughter run! At the moment our twins are learning to walk. They are both happy to cruise around hanging onto furniture or holding our hands but not confident enough to let go and go off on their own, which personally is perfectly fine with me as I don't know what I am going to do when I have two little people running off in totally different directions!! Something they already like to do, one holding each hand pulling me in opposite directions. The day after having this dream Aaliyah took 9 whole steps on her own! All be them a little wobbly, a surfing moment at step number 5 before regaining her balance for the next 4 steps. I was loudly cheering her on for every step of the way and deafening my best friend who was currently on the phone with me listening as I yelled out each step.

Whenever my children reach any milestones, I always end up thinking about Yasminah and how we have missed out on these sorts of things with her. We will never see her take her first steps or run with her brother and sisters. It makes me sad.

I have only shared this with a few people, because it wasn't until later, much later after we lost Yasminah that I remembered this dream. When I was still pregnant with Yasminah, around week 35-36, I dreamt about Yasminah. At this stage I was on bedrest patiently waiting to get to the magic 38 week date for my scheduled c-section. It was such a strange dream and the only way I can describe it was confusing.

I dreamt that I had given birth to our beautiful baby girl, but I couldn't hold her. I could see her, but I kept reaching out my arms to hold her but she was just out of my reach. I felt like I was floating, trying to reach out to grab her. I remember mentioning this dream to my husband when he visited me that night. We knew when she was born she would be admitted into the neonatal intensive care unit for monitoring, so my husband just said the dream could just be about us not getting to hold her straight away as they will be taking her to NICU.

Was my dream a warning of what was to come? Was she trying to let us know that we wouldn't get to hold her forever.....

This is the one and only time I ever dreamt about my daughter and every night I wish, and wish, and wish that she might visit me in my dreams.

Gift Of Hope for Joshua Hancock

A Gift Of Hope for Joshua Hancock

Joshua was born premature

Sending the Hancock family

Hope, Light, Love and Happiness

Gift Of Hope for Danielle

A Gift Of Hope for Danielle's family

Danielle was born a few weeks ago with a terminal brain tumor.

I personally received a request late Tuesday afternoon for a Gift Of Hope to be sent directly to this family, so they can have all the love and support they need around them, as well as a chance to record some beautiful memories and create keepsakes of their time together.

Sending the family

Hope, Light, Love and Happiness

Know that you are not alone, there are many people who sympathise so deeply with you.
We hope your Gift Of Hope will provide you with some comfort during this time.

With Love YGOH

Gift Of Hope for Alexzander McConville

A Gift Of Hope for Melinda, Pat and Edward McConville with love from your friends the Smyths

Alexzander McConville was born premature at 29 weeks gestation on the 4th June 2010, weighing 1.1kg and 38cm long. Alexzander and another Gift Of Hope recipient Jacinda Smyth were neighbours for 86 days in the neonatal intensive care unit (NICU). They fought NEC and CMV together and multiple infections. Sadly Alexzander passed away on the 30th September 2010 after 119 days of courageous fighting

Sending Melinda, Pat and Edward

Hope, Light, Love and Happiness

Melinda, Pat and Edward you were a huge part of the Jacinda and the Smyths life during their hospital stay and you will never be forgotten

Happy Corrected 1st Birthday

Today Aisha and Aaliyah were due to arrive. I still find it hard to believe that they are 14 months old. Let alone that they were born 8 weeks and 2 days premature, and that we made it through NICU.

It is amazing to me that they survived, given their premature age and the challenges they faced when born, but they did have their own personal guardian angel watching over them and a wonderful team of Doctors and Nurses who we are very thankful to.

Yesterday we had their 12 month corrected age, growth and development assessment. It basically assesses their weight, height, problem solving skills, language skills and gross motor development. A paediatrician performed a physical examination and a psychologist completed a series of tests to see how their skills are developing.

We were at the hospital for 3 hours. Not an easy task when you have 3 children, aged 3 and under in a tiny room with no windows. But we made it through with snacks, hugs and laughter with a few tears thrown in for good measure.

At birth Aisha weighed 1554g and was 41cm long.
At 14 months, 12 months corrected Aisha weighs 9.56kg and is 74.3cm long

At birth Aaliyah weighed 1773g and was 41.5cm long.
At 14 months, 12 months corrected Aaliyah weighs 9.36kg and is 74.4cm long

So suffice to say that their growth is outstanding. The last time we visited for their assessment was when they were 8 months, 6 months corrected. At that time they were both still breastfed and having a lot of difficulty with reflux. I managed to continue breastfeeding them until they were 8 months old but sadly they stopped gaining weight and lost interest, so we weaned them across to an anti reflux formula and we haven't looked back. Establishing solids was difficult, but that has also settled and they eat a wide variety of food. They both LOVE their veggies especially peas! And just like their dad and their brother cheese and yoghurt are their favourite.

Aisha and Aaliyah's problem solving skills are considered above average for their age. Their gross motor skills were slightly below average. They have only just begun to pull to stand and Aisha chose this day to pull up to stand all on her own. My husband and I looked on with amazement as Aisha pulled up with all her might to stand on her own two feet. Today both of the girls have been pulling up to stand. Their older brother walked at 11.5 months and honestly I did not think the girls would be walking until they were about 18 months but you never know...... The Doctors have recommended we obtain some physiotherapy for both of them to help them progress and develop their gross motor skills. If they haven't improved or they are not walking by 18 months then we need to phone to make another appointment, but fingers crossed with some encouragement they will be walking and running in no time.

Their language skills were also assessed by the psychologist. They say all the usual words like mum, mumma, dad, dadda, Za (which is Zach) and recently added bye, bye to their repertoire. We read a lot of books and have done since they were born. One of their favourite books is The very hungry caterpillar. Aisha just a few days ago pointed to my t-shirt and said ba. She was pointing at the butterfly in our logo, on my t-shirt. I was so proud, my baby is beginning to say real words, understand things around her and communicate with these new found skills. During Aaliyahs assessment a series of objects were placed in front of her and she was asked where the dolly was. Aaliyah reached for the dolly and said bubba! Another first for Aaliyah. Aisha was considered as average for her language skills and Aaliyah as above average.

Overall they were very happy with their growth and development and we don't need to go back! After 14 months they have been given the all clear! Happy corrected 1st Birthday to my two beautiful girls, we love watching you grow and develop and are so very proud of you. Thank you for bringing so much love and happiness into our lives

Custom Made Journals

I have always kept a journal, but never realised how many I actually owned.

I own a lot of them and these are just the ones I found in my studio!

Each one is about a different moment in my life. Dating my now husband, planning our wedding and trying to conceive our first child.


The ones that had the most impact on my life were Yasminah's pregnancy journal and Aisha and Aaliyah's journals through NICU.


Yasminah's journal is still something that I only occasionally open up to read. There is raw emotion, memories and pain sprawled across the pages. The days following her death, were very dark filled with questions, anger, tears, and feelings of loneliness, depression and helplessness. But writing my way through my grief, three things were very clear. The profound love I have for my child, hope for the future and support from those around me.

Writing is often used in grief counselling, particurly refelective writing. Studies show that reflective writing after the loss of a loved one, can positvely impact on reducing emotional abuse and self harm.

Reflective Writing is a practice in which the writer describes a real or imaginal scene, event, interaction, passing thought, memory, or observation in either essay or poetic form, adding a personal reflection on the meaning of the item or incident, thought, feeling, emotion, or situation in his or her life. Many reflective writers keep in mind guiding questions,
such as "What did I notice?" "How has this changed me?" or "What might I have done differently?"

Thus, the focus is on writing that is not merely descriptive. The writer doesn’t just hit the replay button; rather, he or she revisits the scene to note details and emotions, reflect on meaning, examine what went well or revealed a need for additional learning, and relate what transpired to the rest of life

So whilst our journals are pretty to look at, they also have a pratical meaning, they are a Gift Of Hope. A way to help families heal through reflective writing. Most importantly it provides families with a place to record the memories of their precious child.

The first custom made journal I made was sent to a family who just lost their second child, a little boy who lost his life in NICU.

A simple blue and white journal with a single white flower embellishment and three words

Live, Laugh, Love

It was Wednesday the 26th May 2010, exactly 1 year and 2 months after we lost Yasminah.