Baby Riley is in the NICU at Waikato Hospital, please help her family to stay at her side as she travels to Auckland for heart surgery.
Bay of Plenty
On January 2nd 2016, my sister Dionne gave birth to a beautiful baby girl named Riley, weighing less than 5lbs.
Less than 24 hours later she and Riley's Dad were told that she may have Down Syndrome and many related concerns.
They had very little time to process this news before one in a series of complications associated with Riley's diagnosis saw them being rushed by ambulance to Waikato Hospital.
Riley had an emergency surgery on her bowels and will stay in hospital for many weeks while she recovers, when Riley is well enough she will travel from Waikato Hospital to Starship Hospital in Auckland to have heart surgery.
Riley's parents, Dionne and Anaru are from the Bay of Plenty. They are currently staying in Hamilton for the next couple of weeks, while Riley is in the NICU on a feeding tube and needing breathing support. They will then travel to Auckland for as long as it takes where Riley is to have her next surgery (heart surgery) and other tests.
They are currently living off a contribution to their accommodation from the DHB and whatever other money they can put together (while still meeting their obligations back home) unfortunately there is a huge shortfall every day - just to stay in the same city as baby Riley.
As you can imagine it is very draining; not knowing how you will get by each day while your baby lies in intensive care, it takes a toll.
Sadly Anaru may have to miss out on the rest of his little girls journey - he will need to return home at the end of his leave to continue working to support his family, if we can raise enough money to help them meet their obligations, then he may be able to take some time off to be with his daughter as she has her next surgery and fights to get well.
My sister Dionne and her fiancé Anaru are not the kind of people who ask for help, they are the kind who are always helping others. They are two of the most giving and loving people you could hope to meet and they love their daughter so much, well now they need our help. All they want to do is be by Riley's side to love and support her as much as they can while she fights her battle to overcome all that has been thrown at her in her few short weeks on this earth.
Your help is greatly appreciated, no amount is too small and no words can convey how very much appreciated your help is. Di and Anaru have so much to deal with right now, I hope together we can help alleviate the financial burden of what is already such an anxious time as baby Riley fights for her life.
I am Riley's Aunty (Dionne's sister)
Riley - 3 weeks 3 February 2016
?? Hello to my amazing family and brand new friends who have been cheering for me on the sidelines or being an incredible support to my mummy and daddy who are working hard to shower me in love. It's Me! Riley! ??
I'm now 3 weeks and 3 days old (although the nurses say I'm technically 39 weeks old because I arrived early). I have been working really hard to adjust to life outside of my mummy's tummy.
I was brave when I had to have surgery on my bowel (when I was 3 days old) - even though I was in theatre for almost 5 hours. I have a colostomy pouch now but my tummy feels much better and mummy and daddy have been learning how to meet my special needs.
Although mummy misses home, her and I have to stay in Hamilton because I am getting the best care here in the newborn intensive care unit at Waikato Hospital.
Because of my tummy problems (I have hirschsprungs disease) I have been fed through a nasal gastric tube since birth. Right now I am working hard to relearn how to drink with my mouth but I get very, very tired easily because my beautiful little heart also needs surgery soon.
The heart expert here at Waikato Hospital - Dr. Fraser - said my heart has to work alot harder than typical babies hearts. The equivalent of what YOUR heart would need to do if you were jogging on the spot all day long. So I need extra help with my breathing and am connected to an oxygen flow all the time.
I was losing weight so the doctor's started giving me a special type of formula which is helping me get pudgier. The doctor's say that's important so I can be strong enough to travel to Auckland for my big heart operation in March or April.
My mum was worried because I was having some trouble swallowing and breathing but the doctor's made her feel better when they told her they can teach her to help me use oxygen and a feeding tube at home after my heart surgery if I still need those things.
I am working hard to grow stronger each day so I can be with my brothers' and sisters' and meet all of the wonderful people who care so much about me and my family.
My aunty Becky and Nana Judy say I'm precious because I came into the world to unite people and bring them together.
We are ALL connected. I love you.
?? From Riley xox ??
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