“Help Baby Jayden”: Please Welcome Wen Baragrey
Introducing Wen Baragrey:
Today I am welcoming friend and fellow SpecFicNZ-er Wen Baragrey to “…Anything, Really.” In her guest post she will explain the background to and purpose of the “Help Baby Jayden” fundraising campaign and also discuss the online charity auction on June 2.
Formerly a resident of Christchurch, Wen is one of those who helped me and many others out following the February 22nd earthquake by delivering water and essential supplies. I know many people here remember her kindness and generosity, so I hope you will take the time to read her post and consider supporting the “Help Baby Jayden” cause.
I have personally donated a signed “Helen Lowe” set of Thornspell, The Heir of Night and The Gathering of the Lost, to the charity auction.
But right now, here’s Wen to tell you more.
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Guest Post: Wen Baragrey and “Help Baby Jayden”
Introduction:
My name is Wen Baragrey, and I would like to tell you about the “Help Baby Jayden” fundraising programme and auction and ask for your support.
First of all I should let you know that my connection with “Help Baby Jayden” is that I am Jayden Huynh’s very proud grandma, which makes what I am about to tell you in terms of Jayden’s story and how “Help Baby Jayden” came about both very personal and also difficult. I do hope I can do Jayden and what we are trying to achieve justice. First though, I’d like to thank Helen, both for allowing me a guest post on her blog, and for her support and friendship.
And so [deep breath!] here goes!
Jayden’s Story
Jayden’s short life has been a dramatic one. In fact, the drama began before he was even born. An ultrasound scan at nineteen weeks pregnant showed that he wasn’t growing properly. A few weeks later the 7.1 earthquake struck in Christchurch where his parents were then living. By twenty-eight weeks, he had stopped growing altogether—and had to be delivered by emergency c-section at thirty-five weeks, after he stopped moving altogether.
When he was born, things looked much better than expected. Although he was small—just 1900 grams, or 4.1 pounds—he was feisty. He only needed help to breathe for the first half-an-hour, and the nurses predicted he’d be home within a day or two. After all the worry in the lead-up to his birth, we couldn’t believe our luck.
Unfortunately, it didn’t last.
The next day he started to look jaundiced and very unwell. An x-ray showed that his bowel had perforated. That was the start of a long list of problems.
By the time he was eight weeks old, Jayden (still in NICU) had gone through three emergency surgeries. The first was when he was only 24 hours old, to repair the perforated and septic bowel; another (after a bowel infection and pneumonia) to repair an artery in his heart that hadn’t closed (a P.D.A); and then a second bowel operation to remove most of the rest of his bowel and give him an ileostomy (a stoma). He’d also built up a list of other conditions to go along with these ones, including Torticollis (a problem with muscle strength), laryngomalacia (a condition which affects his voice box and throat making swallowing tricky and giving him a very quiet cry), and a high palate that made sucking difficult.
In June, after going through the trauma and disruption of the devastating Christchurch earthquake on February 22nd and its aftermath, we decided as a family to relocate to his dad’s homeland of Australia. Jayden’s doctors had been discussing his case with specialists based in Melbourne’s Royal Children’s Hospital, and we felt it would be a good idea for him to see them in person. He had begun having seizures, and would stop breathing during these. One of these episodes happened right after the major earthquake of June 13th but Jayden was unable to be hospitalised since the hospital was being evacuated—a circumstance that underlined the decision to relocate to Australia.
He arrived in Australia and promptly had another seizure, just as we were stepping off the plane. The paramedics were called and we were put through customs right at the door of the plane—not quite the introduction to the country we were hoping for! Jayden spent his first week in Australia in the hospital.
The Current Situation for Jayden
His biggest issue since then has been complications due to being underweight. He has never gained weight normally since before he was born. He’s had naso-gastric tubes, naso-jejunum tubes, a g-tube, various formulas and additives, and nothing has worked for long. The staff at Royal Children’s Hospital in Melbourne have been incredible and left no stone unturned in trying to find out why this is happening to Jayden, but some puzzles are not meant to be solved, it seems.
At eighteen-months-old, he weighs only 7.1 kilograms (much less than his little brother, Grayson, who is a full year younger—the boys are often mistaken for twins). Because of his low weight and lack of reserves the smallest infection or bug puts him in hospital. A simple urine infection put him in hospital and made him so sick he was given a spinal tap to rule out meningitis. It was one of many times we thought we were going to lose him.
Since we’ve been in Australia, he’s spent around five months of this first year out of the hospital. He’s due to be admitted again shortly for an indefinite stay until he reaches 9kg, by whatever means. If this fails, he will be considered for TPN feeding, or Total Parenteral Feeding. All his calories will be supplied through a permanent IV port under his clavicle. There is a high risk of sepsis at the IV site as the IV has to be inserted at home every night, and Jayden has very little reserves to fight any infection now. There is also the risk of organ damage, which is higher than usual for Jayden as his liver is already struggling.
“Help Baby Jayden”: What It’s All About
Caring for a little boy with chronic vomiting, a stoma bag, a g-tube, and possibly soon, TPN feeding, is a lot for any young family to deal with. The emotional and financial burden has been huge and so “Help Baby Jayden” has been created to help support the family and assist with the huge financial pressure that comes from caring for a chronically ill child, as well as to help create a treatment room for Jayden where the risk of infection can be minimized.
The Online Auction:
On June 2nd, we are holding an online auction through Jayden’s blog that will run for a week. Most of the items featured are related to publishing or art as these are the industries I’m most involved with. There will be signed books, critiques of query letters and partial manuscripts by agents and authors, as well as some magnificent pieces of art and handmade jewellery. You can place bids in the comments after each post featuring an item, and when the auction closes, the last bid wins the item. All the proceeds will go directly to Jayden’s fund.
If you would like to check out the items when they begin to be posted on June 2nd, please check out Jayden’s blog. http://helpbabyjayden.wordpress.com/
Here is a link to the blogpost announcing the auction with more information. http://helpbabyjayden.wordpress.com/2012/05/04/big-news/
There is also a Twitter account set up which will announce each new item as it comes up on the auction. You can follow here: https://twitter.com/#!/HelpBabyJayden
If you would like to make a donation in the meantime, you can do so through Jayden’s mycause.com.au page. http://www.mycause.com.au/mycause/raise_money/fundraise.php?id=51307
There is also a facebook page set up for Jayden, which you can find here. https://www.facebook.com/HelpBabyJayden?skip_nax_wizard=true
If you would like to donate an item to his auction, please email nataliebahm(at)yahoo(dot)com as we will be collecting items up to the start of the auction. Anything you think might interest bidders is more than welcome!
We appreciate any and all contributions people feel able to make. Every donation, prayer, or good wish means the world to us.
With sincere thanks,
Wen Baragrey.
We can donate a special commemorative Hobbit frame given to Weta employees. It’s a lovely thing for LOTR and Hobbit fans and this is a great cause. I’ll email separately with a pic.
Mary, that sounds wonderful: thank you!
Mary, I am absolutely blown away by this! Thank you so very very much. I’m sure this will be a popular item. On behalf of Jayden and his family, thank you. I’m just lost for words.
It’s our pleasure, Wen! I hope it raises some good funds for you.
I do hope so! It’s such a cool thing. I doubt many people even know they exist!