She is the true gift that keeps on givingCelebrate T21 with us

She is the true gift that keeps on giving

Our Nell was diagnosed at 36 weeks gestation. We were airlifted to Canberra where they found the heart defect and completed the fluid test which we waited 7 days for to diagnose she had Down Syndrome. We were then taken to Sydney where she was diagnosed with a large hole in the centre of her heart, one valve had only been formed and also warned of disfigurement and prognosis was minimal for survival at birth. We were told we would not be able to hold her but thanks to our Amazing PEARL midwife demanded we hold our girl before being whisked away.

We spent about 5 months living at Ronald McDonald House with our 2 and 4 year old boys with many transfers between Westmead and The Children’s hospital due to Nell contracting a virus in hospital which meant she had to be isolated and the hospitals struggled with the bedding. Nell had a feeding tube, a nasal tube, CPAP and oxygen. She contracted pneumonia 3 times amongst many other viruses due to her suppressed immune system. Whilst in hospital we discovered vision problems which has required surgery- ongoing and hearing both required surgery after returning home. She now wears glasses and a hearing aid. Well attempts to.

Nell went into heart failure on the 24th of December, Christmas Eve and required open heart surgery on the 28th in which they were able to complete an almost perfect surgery which we are forever grateful. Nell is going great guns. She is the true gift that keeps on giving. We have many challenges with her ongoing medical care and treatments but for moment we live to love her everyday as she has brought so much joy to our family. Her heart is continuing to monitored and we will not ever really know in the years to come what surgeries she will require.

Nell has Speech and Physio weekly at our home which she loves and thrives with our local professionals. She also participates in Hydro, OT and swimming lessons. Nell has developed a fondness for wrestling with her brothers Archie and Darcy who seem to let her win all the time. She really is the apple of their eyes and so are they to her.

Our Nell wasn’t in the plan but she did create a new map for us with so much to be discovered.

By Nell's Mum, Sarah Dunbar

Comments

Ambassadors 2021 Volume 6!

Introducing... Flynn Flynny is 4 year old. He loves cars and his little brother Riley they are best friends. He is obsessed with bluey and laughing and playing. He’s learnt how to sign I love you the way we do. He can walk, run, and can now even dress himself! He is so loving and caring and brings happiness into everyone’s life he meets. Flynny loves running and hide and seek especially! We are so passionate about inclusion and t21! To make it even better Flynny was born on world Down syndrome day! We are the ‘lucky few’ and would love for Flynny to share in this opportunity to be an ambassador for celebrate t21 and make some more beautiful friends. Ella Ella is 2 and a half years old and the absolute light of our lives and everyone who she meets. Ella is our rainbow baby, her big brother Brooklyn watches over her in heaven & she also has a little brother Hudson who she adores so much. Ella did not have an easy start to life, spending the first 3 months of her life in hospital...

Letters to Me: Dear Melanie

Dear New Mumma, Earlier that day, you were elated at seeing your beautiful baby during your 20 week ultrasound, he was the most gorgeous little boy. His older sisters sat in awe watching him. Now as you sit in the obstetricians office he tells you they think there is something wrong with your baby! He needs you to go and have an urgent ultrasound to confirm what they think! He tells you there is a huge risk of miscarriage but doesn’t tell you that you have a choice not to do it. All the elation from earlier is replaced with fear, worry and sadness. What is so wrong with this gorgeous little boy kicking away and how could you survive if you lost him! The amino was the most horrible thing you had to endure. Fortunately neither you or your little boy moved and the procedure was deemed a success. The next couple of days you are stressed. You get some cramping but luckily your little boy was not giving up. A couple of days later you get a call from your doctor. You can tell by the tone of h...

Letters to Me: Dear Claire

To Claire, Me, when I first received the diagnosis that my unborn son would be born with Down syndrome. Hi I’m not going to ask how you are because I know exactly how you are. You have just been told by your doctor that your baby would be born with a triplicate copy of his 21st chromosome, meaning that your unborn baby will have Down syndrome. You also have found out that your baby will be a boy, a boy that you had been hoping for. I know that right now your terrified. This was not even on your radar and certainly was not part of the future you had been planning. Your scared about what this means for you, for your husband and most importantly for your 3 beautiful children, Bella, Charlie, and Brandon. I wont lie, the next few months are going to be hard. You have just faced a new diagnosis and your about to experience new medical terminology, new life expectations and new goals for yourself, your family and for your baby, pretty much new everything. During this time your friends, your ...

Search This Blog