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  <url>
    <loc>https://www.jaymacsjourney.com/contact</loc>
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    <lastmod>2023-10-09</lastmod>
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      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/1632951362273-PIZW6JOMIVJ56MT0R2ZC/Cherub%27s+Cove.jpg</image:loc>
      <image:title>Contact</image:title>
      <image:caption>Releasing flower petals from Jay’s memorial service at ‘Cherub’s Cove’ on the South Coast, Wellington.</image:caption>
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  </url>
  <url>
    <loc>https://www.jaymacsjourney.com/about</loc>
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    <lastmod>2022-02-25</lastmod>
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      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/902e23ec-8726-4fd2-a179-8e3d73a158cd/19BE93AD-F000-4EC4-B744-EF037F3803E3.JPG</image:loc>
      <image:title>About - Our Christmas miracle.</image:title>
      <image:caption>Two weeks after being advised we’d had a miscarriage we found out our baby was in fact ALIVE with a healthy heartbeat! A misdiagnosed miscarriage was just the start of the incompetencies in our care but at that time we were just so happy to be pregnant!! For the longest time we thought that Jay might be a girl. We named her Jasmine Star. Andrew said he’d put ‘Jasmine Super Star Ritchie’ on her birth certificate. We couldn’t wait to meet her.</image:caption>
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      <image:title>About - Those first four months were the best.</image:title>
      <image:caption>The absolute best. We were excited about everything. We were so excited about having a baby we even talked about how we weren’t going to complain about getting up in the night to care for them. We were excited about our cat Willow meeting the baby – she hadn’t met a baby before! We were excited about buying loads of woolen clothes – In the most bright, beautiful colours and patterns! I started knitting a colourful woollen blanket to keep our winter baby toasty warm! We had never been so happy.</image:caption>
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      <image:title>About - Hotel Life.</image:title>
      <image:caption>Jay could be one of the few babies EVER with this genetic condition (we’re waiting on confirmation on this). This means our pregnancy was a one in a billion+ too. Every week, over a long period of time, Jay’s movements reduced. At the end of pregnancy Jay wouldn’t move for 10-12 hours at a time, never kicked and still measured below the first percentile. When he did move, his movements were in slow motion – it felt like he was dying or about to die. We needed extra monitoring as a result. We dropped everything – we chose to move into a hotel across from Wellington Hospital. I knew this is what I needed to do – that if things declined further it could be picked up quickly and Jay could be saved. Hotel life wasn’t as glamorous as it sounds. The highlight of my days included receiving fresh towels and linen (I did love this!). The rest of the time I was frightened for Jay’s life. I distracted myself by doing art, playing Jay the ukelele and eating. A lot. It made zero impact on Jay’s growth and development. I also counted down the hours until Andrew finished work. Being around Andrew made me feel calm. Hotel life then turned into Hospital life. I was in the hospital about three weeks before Jay was born. Through some miracle, we got to 36 weeks.</image:caption>
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      <image:title>About - Cherub’s Cove.</image:title>
      <image:caption>Days before our scheduled c-section we decided to write letters to Jay – one from each of us. In them, we begged Jay to keep fighting. We said if he really couldn’t, we’d have to understand. And that we loved him so much. I also said sorry to him for all the monitoring and for just everything. We then decided to take some pregnancy photos – the last ones of the pregnancy. We also knew they could be some of the only photos of us as a family. We found a little bay on the south coast. We named it ‘Cherub’s Cove’, for Jay. We knew it would always be a special place for us.</image:caption>
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      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/0dc770e8-7c92-47f3-95e0-ca69302ee9f6/IMG_6211.jpg</image:loc>
      <image:title>About - Emergency c-section.</image:title>
      <image:caption>As soon as Jay came out, I went under, and Andrew was pushed out of the room. In an instant the three of us were separated. The baby I’d fought so fiercely to protect was away from me now – his life in the hands of a team of baby specialists. The umbilical cord was wrapped around his neck 3-4 times and it took awhile to revive him. My experience of having a newborn wasn’t filled with visitors and flowers. In those first few days it was filled with intense medical talks and barely seeing Jay. In Jay’s first 12 hours I was visited at my hospital bed by five different doctors - luckily they were really kind - some we knew, some we didn’t. They all talked about his complications. Complications that were not picked up in ultrasounds. I didn’t really react. I instinctively knew it would be this bad. I finally knew the reason for his slow motion movements. I finally knew why Jay wouldn’t move for 10 hours straight. Every day. I was more shocked Jay was ALIVE than shocked by his complications. Jay was an absolute miracle to me – and an absolute medical mystery (though Andrew told me to stop saying this to doctors who specialise in this area!). I was intuitive about Jay. A lot of my theories about Jay would turn out to be true. I was desperate to get to know him. Jay was resilient.</image:caption>
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      <image:title>About - Learning to care for Jay.</image:title>
      <image:caption>We were now on a new journey. The NICU journey. “Do you notice that every time we get to NICU they put us to work?”. We laugh about this now, as we were his parents so doing ‘cares’ was a natural part of what new parents do! Any NICU parent knows ‘cares’ are a big deal – a set routine for nappy changes and caring for your baby. It felt like we needed a medical degree just to change Jay’s nappy! Jay was a high needs baby. On a good day he would literally sleep through his cares, enjoy hand hugs, and it was enjoyable for everyone. On a bad day ‘cares’ were really unsettling for him, and us – his heart rate absolutely skyrocketing from the slightest movement. In those early days Jay seemed to be in the intensive care part of intensive care! Once on a regular doctor’s round I counted EIGHT doctors around him. Reading Jay’s Plunket book was a sobering moment too - in his first minute of life he had an Apgar score of ZERO. Back then I didn’t interact with his doctors and nurses much. I just focused on Jay. I didn’t know it then but these people were soon to become Jay’s family. Jay’s NICU family. They were also soon going to heal me from my pain too. In those first few days, Andrew had to physically look after me. He held me in the shower when I was too weak to stand due to blood loss. He pushed the emergency button when I fainted. He woke me when I kept sleeping through my alarms – I couldn’t hear them I was so exhausted – the alarms that were reminding me to express milk. Andrew helped get my strength back up. Andrew helped me bond with Jay. Andrew is the reason I got through this. I then used every ounce of willpower to push past what I was going through – all while processing having a baby with disabilities – at times shutting down my emotions, so I could be present. The tears I cried in pregnancy had dried up. I was in survival mode now. I’d come too far to crumble.</image:caption>
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      <image:title>About - The hair. OMG the hair!</image:title>
      <image:caption>Jay had the most amazing hair. His hair always looked as if it was blowing in the wind, like a blue jay. Parts of his hair actually felt like the soft part of feathers. Jay had three hairstyles – slicked back, spikey, or completely disheveled. Jay’s favourite thing was his hair being brushed with his pink soft-bristled hairbrush. We knew he loved it as we could see on the monitors how it would bring his heart rate down. Nurses would even use it as a tool to calm him down. I remember in ultrasounds actually being able to see his HAIR!!! I couldn’t believe it. I’d never heard of hair showing up on an ultrasound before. His hair was one of the first things they told me about when I woke up from the anesthetic. A memory from that night that I do cherish. Jay’s hair was truly magical.</image:caption>
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      <image:title>About - Mr Zen.</image:title>
      <image:caption>Jay was cute. And funny. We would all laugh about his cuteness! Jay rarely wore hats so when he did it was adorable. His wild hair still managing to poke through. When he wore hats it made us focus more on those sweet cheeks! Jay’s biggest struggle was his brain forgetting to tell him to breathe. These events were sudden and major. However, 95% of the time Jay was actually a really calm breather and a peaceful baby. I actually felt like the reason his brain would forget to tell him to breathe was because he was SO calm! His peaceful energy was quite mesmerising – that’s where his charisma came in. Jay had many, many, many unique characteristics (anyone who met him will know what I mean!). And many, many, many nicknames. We called him Squeak Squeak because he would randomly make loud squeaky noises – like a high-pitched hiccup! Jay enjoyed sucking on his feeding tube and when that was removed he enjoyed sucking on his bottom lip – this was something so characteristically Jay! Jay’s challenges were intense and hard for everyone, but he always managed to create so much happiness and excitement around him too. I’ll never forget the excitement when we saw his beautiful face for the first time. He was five days old and they removed the thick tape across his nose which held his breathing tube in. His nurse was so excited to tell us, it was as if she was telling us we’d won Lotto! It actually felt like we HAD won Lotto – when we looked down at Jay he had the cutest face in the world! There was also the nurse who surprised us by printing a Blue Jays logo to adorn his cot. Then our excitement as we shared with everyone that Jay was named after the Blue Jays AND his hair looked like the logo! All the excitement from everyone when the Blue Jays icecream cup cap fit his head perfectly! There was the excitement that, despite all his challenges, within days Jay graduated from his incubator and into a cot – because he could regulate his own temperature! There was excitement from a doctor who came up to us just to tell us how cool Jay’s hair was AND that it looked like the Blue Jay’s logo!! There was excitement the day we turned up to NICU and Jay was…..wearing clothes! It actually gave us a fright because we weren’t expecting that and it was the cutest thing ever. He was wearing a teeny tiny woolen singlet – which turned out to be the first and last day he wore clothes – as he regulated his temperature so well he was always too hot for clothes after that! There was the excitement when Jay would open his eyes on those rare occasions. Nurses would come up to us hours later saying they’d heard the news!! There was excitement from his physio that he could move some of his limbs and joints more than expected. Or everyone’s amazement at how Jay could lift his head up off the cot mattress without moving the rest of his body – no mean feat considering he had a short neck! There was excitement when I produced more and more milk every day and we brought in a larger bottle of it. The nurse said “congratulations!” and Andrew instinctively replied, “thank you!” (reflecting how exhausted we were!). There was excitement when we’d all watch Jay learn to suckle milk from a small syringe. Or the laughing when Jay would nuzzle into Andrew’s chest looking for milk. There was no other excitement quite like when we bought Jay his pink soft-bristled hairbrush though. His nurses weren’t being excited just for us – they were genuine. We knew this because they were like this around Jay when we weren’t there. So often we’d walk in to find nurses smiling as they brushed his hair or laughing at his cuteness as they spiked it up after a wash – with Jay lying there looking so content. There was also the nurse who would sit there with her laptop table pulled right up next to Jay’s cot – happily working away beside him. We’d laugh that if she was any closer she’d be IN his cot! This is why Jay’s nurses became Jay’s family. They helped lessen our heartbreak that he didn’t have his real family around him. Jay had an energy about him. Jay’s energy was infectious. That’s why he was popular. This tiny baby had a large presence. Jay brought everyone joy.</image:caption>
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      <image:title>About - Spa day.</image:title>
      <image:caption>Jay was obsessed with pampering. This is no exaggeration. Jay was a sensory baby and that’s how we communicated with him. He loved having his hair brushed. He loved hand hugs to his head and body. He loved a full body massage with moisturiser. He loved his bubble baths. Every day was spa day for Jay. We’d have to spend hours leaning over his cot hand hugging his head or brushing his hair, he’d get unsettled when we stopped. Our backs would be killing us. Jay smelt amazing too and I would instinctively smell his hair when holding him but his hair always smelled….TERRIBLE! It was because of all those lovely hand hugs he was getting all the time!! Jay’s nurses loved pampering him too. One of them would roll up face cloths and cushion his feet with them in his cot. Like a little footrest!! It was the cutest thing. She’d also write us notes ‘from Jay’ about what he was up to during the night. We told Jay’s cousins about this and Ruby asked if it actually was Jay writing them. We’d cushion his bath with layers of towels – as if he was sitting on a throne – and used an oxygen tube to create bubbles around his other sweet cheeks! Jay really was TINY. He looked fragile yet he was actually so strong! If he didn’t want his temperature taken he’d lock his elbows down and we couldn’t budge them. In the bath though he would let us lift his arms up no problem! Jay loved containment. We contained him with thin blankets wrapped around him. When lying on his side he’d usually have one main muslin between his arms that went down through his legs then high up his back. It looked like a candy cane. Andrew would say he was ‘riding his candy cane to dreamland’. Like the Blue Jays logo, Jay had his Macdonald (Mac) tartan ribbon adorning his cot. Jay’s great grandmother, Bunny (Grace) Ritchie, was a neonatal nurse. Jay’s other great grandmother, Ophir Macdonald, was a midwife. The care of babies was in Jay’s heritage! Jay got and deserved the best. Pampering brought Jay joy. In his final days we lined his cot with a sheepskin with a white muslin over it. It was as if he was floating on a fluffy cloud.</image:caption>
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      <image:title>About - Making memories.</image:title>
      <image:caption>Two weeks before Jay passed away he was moved to his own room. Here he lived his absolute best days. This was when I discovered how popular he really was at NICU. Nurses would visit him who we hadn’t even met before – he knew more people than we did. Once Jay had six nurses come visit within an hour! It was heartwarming knowing he was surrounded by nothing but love. Jay was surrounded by his favourite people 24/7. One of Jay’s nurses surprised us by decorating the whole room in Jay’s cousins’ artwork. She even created a large family tree (with birds around it!) – so we could print photos of Jay’s family and have them close. During those days we got to experience Jay’s true essence. His tubes were removed and the aggressive treatment changed to palliative care. Jay was free. He began to enjoy sucking on little syringes of milk, surrounded by music and his cousins’ art. We would have small crowds of people gather to watch him in the bath or sucking his dummy – those same doctors and nurses who used to gather to save his life. Jay’s palliative care nurse was there too – all of us around him smiling. I was so happy, yet so sad. I was so sad, yet so happy. That’s what it was like. My favourite time at NICU was nighttime. It was so peaceful and Jay always seemed more peaceful too. In those moments I would feel so happy just holding him. I loved just holding him in that room. I stopped wearing those awful kangaroo cuddles hospital robes and wore my normal clothes. In those times I felt like a normal mum – not a high-intensity-NICU mum. We told Jay’s nurses they could hold him when we weren’t there – we wanted him held as much as possible at this point. Walking in and seeing his nurses holding him were my proudest moments. I remember that feeling so vividly. They would be sitting there with big beaming smiles. Holding this baby we all loved. My baby. My Treasure Baby!</image:caption>
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      <image:title>About - Free bird…</image:title>
      <image:caption>On a sunny morning, the second day of spring, Jay passed away peacefully in his dad’s loving arms. It was just us with him in the room which was perfect. Throughout the day Jay’s doctors and nurses came in to say their goodbyes. Some had tears in their eyes, some cried. They weren’t just saying goodbye to Jay, they were also saying goodbye to us too. These incredible people were soon going to be out of our lives now too. These medical people who absolutely made up for my horrible pregnancy experiences. Three months living on that same street had come to an end. We were now off to rebuild our fractured life – not knowing what our grief journey would bring. Our bodies exhausted, our hearts broken. Jay was cremated and buried at Makara Cemetry alongside my grandparents, Eileen and Morry Doyle. Jay will be forever getting hand hugs in their loving arms.</image:caption>
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      <image:title>About - DONATE: Jay’s memorial registry.</image:title>
      <image:caption>We have launched a Jay Mac memorial registry with donations going to The Neonatal Trust. We’re aiming to raise $5000 by the end of 2022! The Neonatal Trust does important work that has a huge impact on families navigating the NICU journey. A huge thank you to everyone who helped Sarah raise $2,145 via her birthday registry in 2021.</image:caption>
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  <url>
    <loc>https://www.jaymacsjourney.com/nicu-1</loc>
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    <lastmod>2022-07-09</lastmod>
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  <url>
    <loc>https://www.jaymacsjourney.com/oursurvivalguide</loc>
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    <priority>0.75</priority>
    <lastmod>2024-04-04</lastmod>
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      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/722f83be-1f9f-4484-8849-f80f9f79ad4b/Our++Survival++Guide_V5.png</image:loc>
      <image:title>Resources</image:title>
      <image:caption>TOPICS INCLUDE HOW TO: communicate with medical teams process having a baby with disabilities make memories in palliative care be there as a midwife, doctor or nurse. “Navigating a rare pregnancy in New Zealand can only be described as a living hell at times. In memory of our baby Jay we created ‘our survival guide’ for parents and medical professionals. We hope to make other journeys easier than ours.”</image:caption>
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      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/722f83be-1f9f-4484-8849-f80f9f79ad4b/Our++Survival++Guide_V5.png</image:loc>
      <image:title>Resources</image:title>
      <image:caption>TOPICS WILL INCLUDE: navigating a pregnancy after baby loss tools and resources for wellbeing. “We’re very lucky to have welcomed our second baby in January 2024. We’re in the process of compiling a resource to support parents navigating a pregnancy after baby loss, sharing things that helped us through.”</image:caption>
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  <url>
    <loc>https://www.jaymacsjourney.com/grief</loc>
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    <lastmod>2022-07-10</lastmod>
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      <image:title>Grief</image:title>
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      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/57da7825-b1a7-42ce-ac26-3d576f41af45/266574957_414470483628848_2196037179195468606_n.jpeg</image:loc>
      <image:title>Grief</image:title>
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      <image:title>Grief</image:title>
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  </url>
  <url>
    <loc>https://www.jaymacsjourney.com/about-jay</loc>
    <changefreq>daily</changefreq>
    <priority>0.75</priority>
    <lastmod>2024-04-04</lastmod>
    <image:image>
      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/8d275510-63f3-4d9e-97c8-0ffcefcb2fcb/B8E04F5C-B98D-4BE7-BA63-254969A4ED21.jpeg</image:loc>
      <image:title>About Jay - “When I think about what Jay loved most in the world it would have to be the pampering! Jay was a sensory baby and loved hand hugs to his head, his hair being brushed, and he was most relaxed in a good bubble bath.”</image:title>
      <image:caption>Jay’s Mum, Sarah.</image:caption>
    </image:image>
  </url>
  <url>
    <loc>https://www.jaymacsjourney.com/home</loc>
    <changefreq>daily</changefreq>
    <priority>1.0</priority>
    <lastmod>2024-04-05</lastmod>
    <image:image>
      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/1632898463302-SBA7J4SGTQL6X0MCOPTM/IMG_4895.jpeg</image:loc>
      <image:title>Home - “Jay was strong, charismatic and a total darling. He had the brightest light which shone from within him. Nothing could dim it. Not the pain, not the tubes, nothing.”</image:title>
      <image:caption>— Auntie Lucy</image:caption>
    </image:image>
    <image:image>
      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/1632898588874-VK4J6UHWJ4OIPK6XFGCW/IMG_6214.JPG</image:loc>
      <image:title>Home - “When I started to think about having a child, I got very excited about the possibility of having a little version of me. Jay turned out to be the opposite: he had a full head of hair, and was a real ladies man.”</image:title>
      <image:caption>— Dad, Andrew</image:caption>
    </image:image>
    <image:image>
      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/722f83be-1f9f-4484-8849-f80f9f79ad4b/Our++Survival++Guide_V5.png</image:loc>
      <image:title>Home - Our Survival Guide #1</image:title>
      <image:caption>A FREE guide for parents, medical professionals, charities and counselors navigating rare journeys. Navigating a rare pregnancy in New Zealand can only be described as a living hell at times. We hope to make other journeys easier than ours. *This guide is being developed further.</image:caption>
    </image:image>
    <image:image>
      <image:loc>https://images.squarespace-cdn.com/content/v1/5f44c31fdb00724c4149572e/64b64875-0a3d-496d-b61c-d368ad0602fe/PHOTO-2021-11-22-21-26-09.jpg</image:loc>
      <image:title>Home - Jay’s story in Stuff</image:title>
      <image:caption>“Jay Mac Ritchie achieved a lot in his six weeks. A miracle baby, Jay knew how to beat the odds, and through his parents he's continuing to make a difference. Katie Townshend shares their story.”</image:caption>
    </image:image>
  </url>
</urlset>

