My activity tracking
97
kms
My target 96 kms
Day 30 - the end… we did it.
Well we did it! All made our targets and all achieved our goals! Am I skinny… no but it was nice to get out there and run and walk. More so walk. Can confirm not a runner still havent reached my “run a marathon phase”As for the story of mine with Charlotte! If you have made it this far thanks. Apologies for the spelling mistakes and poor grammer it’s not my strong point and I wasn’t really vetting my work! Just putting words on my phone during a walk or at bed time.
We were discharged on 4th Januray 2024. On oxygen and feeding tube. The first month at home was rough… Charlotte completely stopped Breast feeding and then stopped bottle feeding so everything was being put through gravity gavage… so to explain this. I was having to express, attempt bottle to which she refused. Then sit next to her bassinet and have the milk slowly poured in via gravity. No pushing the milk just sitting with arm up.. so feeds would take over an hour and then start again. It sucked! To add to that she was working hard to breath so weight gain was zero as she was burning too many calories. There was some pretty rough times and admissions to hospital. But we were referred to respiratory got her oxygen on top of aka she just ended up getting stronger. Got her feeding routine a bit better. I stopped expressing. This then added to potential formula allergies. She had chronic reflux and aspiration. And to people that have babies with reflux.. I see you… it sucks.. honestly!
But we ended up in hospital for failure to thrive in about October. She was put on lesser volume of feed and around the clock. So at 1 year old we were still feeding 4 hourly.. again it’s not the worst I get it but the feeds go for over an hour via a pump. Then she may or may not vomit, it was exhausting. But suppose babies are right!
Developmentally she was lagging behind. Wouldn’t weight bare on feet and definitely not hands. Charlotte was the prime example as to why tummy time is so important. Her entire upper body had no muscle she couldn’t lift her head!
She had surgery for grommets, and for a PEG. Oxygen was taken off at about 18 months. And finally we had a baby and we could see her face. She looked normal and was a lot happier and moved more.
So the bum shuffling began. A Physio’s nightmare. Again doesn’t involve any upper body strength and is a very central movement so no trunk or turning muscles.
But she was moving forward ever so slowly but she was getting there. She had a very serious case of pneumonia in June. We were hospitalised and she was really sick. We found out she had a pig bronchial in her right lung. 10% people have them so not too unlikely but also makes her high risk for pneumonia. But she recovers quick.
Charlotte rarely cries and if she is it’s normally her way of saying I don’t like it. She is happy and cognitively I watch her and she is clever there is specific thought processes she is doing that have purpose. Although our communication at 2 is practically zero she can sing sounds and does mimic sounds and words. She doesn’t eat but gets her nutrients through the peg, gross motorly she is about 11 months of age. And she is tiny, her feet are so tiny. She is beautiful.
Charlotte is the best thing to happen to me and this family. She wasn’t guaranteed to survive but she did and she saved me and got me the help I needed and put life in perspective.
This fundraiser has been really beneficial in being able to put some of the experience out there and just feel like I’m done now. Let’s move on. Charlotte is good. I am good.
Let’s bring on the next year and what we may achieve. It’s exciting to see the wins. It’s exhausting to reach them but that’s what makes it worth it right.
Thanks again for all your support, donating and reading! I treasure all my friends and family and am so grateful for the people around us. So thank you and we appreciate you all.
This is me out. And I’ll never blog again
K byeeee
Day 28 - the end is near
Well Nath and I did a 7km walk to get us closer to the end. Which is bitter sweet. It’s been an amazing motivation to get out there and do it. The weather has been an absolute joke! And this blogging has been nice.So for me this is my closure for Charlotte and the 2 plus years we have had. At 2 there is no more “corrected age” for Charlotte she is 2 with a complex medical history. I need to let things pass now. I won’t be cured, there is a lot of trauma but this is my steps to letting go of that. And it’s also my way of trying to get some of my personal life back with exercise and making time for me. Feeling happy within myself and active for my kids.
Charlotte is in NICU for 11 days. I get to hold her 1 week after she is born as she is put on a c pap so means I can hold her “easily” what one of many concerns is touching, moving, and especially holding baby burns calories. And at this age and size calories we need to keep not burn. Holding Charlotte feels like you are causing more problems than not. It’s tough she fits into my bra she is that tiny. Fragile. Like a baby bird all bones no meat on her.
I’ve also been discharged. Again for any person that has had to leave the hospital without their child. I will never comprehend that grief. But leaving a child alone in a hospital as you drive home without them is weird. It’s wrong and goodness it’s a horrible feeling! It’s exposing and rips your heart out. It’s not natural.
My life is a daily of getting into hospital asap, expressing, holding if I can, talking to volunteers, drs, lunch and back to bed side to express and be near her before going home and doing it all over again.
Added to that the beeping. Oxygen desats were my life and it was horrid. Just watching your child work to grow and develop is inspiring. I still can’t hear beeps without being triggered! But it kept her going.
We were in SCBU for 88 days. The people I met there. Drs, nurses and other families it was truly the most exhausting but also touching experiences. Forever will cherish it. I’m grateful for what we worked through together as it’s created a great convention
Day 24 - the end is near
I had to go for a walk today as I have Charlotte with me and my early morning alarm got over ruled with the big girls waking up at 3am and having to sleep in their room.Anyways Charlotte is born she is in NICU and I’m on the ward. I don’t think I sleep I might of but my mind was just wired and I wasn’t tired but knew that would hit me like a freight train soon.
How can I explain NICU life.. I’m recovering from surgery but I need to be with Charlotte so as soon as possible I get wheeled to NICU. I’m on pain meds, and in pain moving. Crying hurts but all you want to do is cry. I have no idea what is going on with Charlotte medically. I sit next to Charlotte in an incubated the nurse tends to her needs and I just watch. Not even 12 hours ago it was me, I was the one keeping her safe, it was just Charlotte and I and due to things out of my control with a placenta not working and Charlotte in distress living off nothing she is now in an artificial womb/ incubated and a nurse is tending to her.
I can’t feel her I can’t touch her i definitely can’t hold her I just sit there taking photos of her and watching her take every breath through her tiny undeveloped lungs. I have to take photos of her as I need to express. I need milk to help her. That’s the only thing I have to hold onto to feel useful. It all sounds depressing and you are told that I’m the most important person in the room and yeh I get that but also logically/medically I’m not. I use the sounds and pictures to help my body try and produce milk. I must say out of all my kids the milk came in the best with Charlotte which is mental when you think about it. The woman’s body is incredible! So for that I’m grateful.
The days revolve around drs rounds and trying to understand what is going on. This are changing so quickly you know things are serious they have a conversation amongst themselves very inset very long winded and then they walk over to you and say everything is fine we are just doing x y z and see how it goes. She is doing well. And leave to the next still talking about Charlotte. Then that’s it the wonderful nurses come in and debrief you a bit more but the rest of the day is sitting, expressing taking pain meds and sitting. Not ideal for a surgical wound to recover.
Day 2/3 the blues kick in and that hormonal dump is rough. I’m having a bad night so again a beautiful nurse Paige takes me to see Charlotte as I’m wheeled in the neonate consultant is there which means somethings not right. I’m sitting next to the incubator looking at Charlotte and I’m broken shattered into a million pieces everything of the last year rolls into that moment. I’m alone, helpless and even though Charlotte is there I feel so detached from her. I have to sign some forms. First one is for doner milk as I’m doing ok with supply but just in case we need more.
If it’s one thing I suggest anyone can donate your milk you really are saving lives . The other form is for a blood transfusion.. I think the total about was something ridiculous like 5ml or something but she needed it. Just those general conversations that become “normal” . Just need donated n milk and a blood transfusion… cool cool cool. Once I had my bed side breakdown and had everyone help me pull my shit together. Like a switch the walls were up and we move forward.
What the nurses and drs do in that place is a miracle every day every decision every conversation to explain heavy stuff.
Little did I know that first week i was neighbours to a mum that had a boy and we were to become friends and Noah and Charlotte now get to grow up together at family day care! ??
Day 20 - the body is broken and on the mend
Well I’ve had to take a significant step back from running and my shins were ruined. I feel that’s got about 99% to do with my running shuffle and 1% shoes haha but I’m still walking and I will hopefully get couple more runs in the next 10 days.Anywho it’s up to Labour Day… or night. I am currently getting whisked up to the delivery suite. We had to wait for one to get available as it had been the night for it. I had all the normal monitors and leads attached but I was striped into a gown hair net on and the were pumping full of all the drugs to get Lottie’s lungs developing and giving her the best chance to survive on the outside. It’s crazy writing that now… survive. It was a very real possibility she wasn’t going to but we really didn’t dwell on it too much. Self preservation I suppose and fear. Brain wouldn’t let me go there while she had a heart beat and was breathing we were moving forward.
Nathan probably rocked up 20 mins later by then we were just waiting and it was a bit of the eye of the storm. Calm but also anxious as anything.
I finally start getting wheeled into a room and as I’m there I’m still signing forms on the way and they are saying the risks but who is listening on a good day let alone now… we get in the delivery room and it’s full. I’ve never had a c section but I don’t think that many people are in there. We had my obs, lots of theatre staff but also the on call NICU staff and their entourage. I can’t remember much more of this it’s a blur. But next minute I’m laying down. Next I can’t feel my legs and next I’m being cut open. Carmel holds Charlotte above the sheet and the size and sight of her she looked pretty normal to be honest. Again I don’t know if that’s just what I wanted to see but she was here my miracle baby. The one that broke me and saved me all in one. I couldn’t hold her as she needed to go straight to NICU staff. The conversation with Nathan was no matter what you go with Charlotte where ever she goes.
They checked her over and she wasn’t doing great but I was so very lucky they were able to bring her over for a small touch and “hold” and then she was whisked away.
Writing that now I cry, thinking about that I cry but at the time the hormones in me were on overdrive I was so focused on her being ok and getting sewn up. The trauma of everything was a future me problem.
Now I have a real phobia I’ll call it of belly buttons. The feeling and look it’s just a weird one and being sewed up was every part of a nightmare as it just feels like their hands are scraping your spine. I’m wheeled off to recovery.
I get a pineapple zooper dooper (that’s what I remember) not the labour and what I can only express as a lovely sponge down by a nurse who was so kind!
The next greater gift was that they wheeled me into NICU to see Charlotte. That in itself was the first of many times I broke. Seeing her for real, she was tiny, skin opaque and translucent, they had her wrapped in a clear, no lie something that resembled a hot chook bag, she was intubated and on a lot of medications. She was very sick, but she was fighting and in the best hands by far. I could have stayed there all night but it was time for me to go back to my room and decompress…. Again I’ve never had to leave my baby so wheeling away leaving her was hard but what can you do… need to do what needs to be done. But Charlotte Kate Murray was here born 20/10/23 weighing 960grams and wasn’t I better for it, our family and everyone that knows her..
Day 14…. My shinnnsss
Another run completed today I had 40km to go. How ridiculous! I tried an interval run… that’s silly and not enjoyable either. But hobbled back to the car and the ate a tonne of sushi!I’m admitted to Antenatal and Gynaecology at the women’s and children’s hospital! I’m 27 + 4 weeks, Charlotte is ok but the blood flow is slowing. I’m now on frequent blood pressure checks and dopplers. I have Grace and Elise at home I’ve been off work for about 6 weeks due to the regular scans and high risk and I’m stuck at hospital feeling rather helpless. I can’t help at home, I can’t support Elise and my body isn’t doing its job to grow our baby. It seems silly but mentally it was a tough time of feeling like a failure and extremely helpless. I however had the most beautiful nurses and friends. That I am truly grateful for!
Tania, Leah, Kim, Kate, Paige and Helene… there is so many more as well but these amazing women and the job they do is something I can never repay. They kept the wheels on the tracks when it was derailing daily!
These 10 days were hard, most the time I felt like a fraud, because everything was ok… not amazing but ok. We had scans regularly and all the checks and everything was looking ok. I was hearing how hard everything was at home and wanting to be home was really difficult. As I said the level of helplessness and being stuck in a room day in and out was not ideal for the mental health. Which fun fact never really got back on the tracks… until now. Trying to fix some of the trauma.
It was Friday 23rd and my beautiful obs came in to check in. Everything was looking ok, I was being out on a CTG twice a day though as heart rate for baby wasn’t playing the game. But again we would sneak through another day. Carmel sat there and said it won’t go over 32 weeks but there is a chance we will get there too if we keep tracking… 32 weeks I was not keen but also that’s great for baby. So had to just roll with it.
That night I was on the CTG for what felt like hourssssss… the heart rate wasn’t doing its thing. When I was laying there alone in the room you get used to the rhythm and beat and all of a sudden it changed… charlottes was dropping off and slowing down 64, 59 bpm. Mine was significantly increasing. I moved around and had a drink of water to try and fix it… and within a second Helene came in. She was game face and found the heart beat again.. but in her calm voice that I still hear today she said people are going to run in here and it’s going to get really full. But you are ok and so is the baby.. I can not explain how relief and fear overcame me. I called Nathan and he came in, the staff called carmel. And the room was full I had a scan and baby was ok and I was asked a lot of questions. I had ate an entire bag of caramel popcorn as I was due for GTT test so wanted to eat all the good stuff before it was taken away!
Carmel was there within 5 mins it felt and she walked in like a breath of fresh air and said we are having the baby she gave me a hug and reassured me. This is not worth it anymore we have gone far enough. And with that she was off to get everything ready. Cannulas were going in, people were still coming and going. Things were getting packed up around me. It was a whirlwind it was overwhelming, mum was at home with girls. I was chatting with some friends and got to fill them in at the time but it was all out of my control my body was struggling I was swollen, broken out in hives all over my body and meeting my baby was imminent and the unknown of a premature baby was happening whether I wanted it to or not.. so that level of helplessness and not being able to provide for my kids was really taking a toll…
Day 10 - running… not any easier
Well started the week off with another run so I can spend the rest of the week recovering. A wonderful SCBU friend of mine who is absolutely inspirational is also doing this fundraiser. Shout out to Tahlia! She is doing 120km but also is able to run quite well as she is exceptionally fit. All I keep thinking and laughing to myself is how “ambitious” this target of mine is. I did not do the maths well!!Anywho… we are off to genetics at the WCH. It was a tough pill to swallow there was so many unknowns. We are the only family they have on record in SA with mosaic T16. They were only able to print out some brochures on very minimal studies.
MT16 came about as the egg had an extra chromosome. The wonders of the body the egg knows that isn’t right so tries to remove it. In charlottes case it removed enough for her to survive. T16 chromosomes is a likely cause of may miscarriages. Charlotte has 65% of the abnormal chromosomes however where and what it affects is really unknown.
There was a 50% chance of one abnormality and 75% chance of more than one… they can vary from congenital heart problems/failure to an extra dimple. The variation was huge, how do you make that decision, the decision to terminate. To the people that have made the difficult decision I can not fathom that pain. For us we looked through the abnormalities and thought we can do this. We will give her the best chance we can one thing we did check though was heart. We had an echocardiogram, we were fortunate to have the bees knees in cardiologist. He sat down with us and there was one VSD found which very common she also had an extra artery but it didn’t cause her any issues it just pumps the blood as well.
That was our final hurdle we were going through with it. And we would do what we needed to. Looking back now nothing can really prepare you for what we were taking on. But we still wouldn’t change it. During this time we also found out we were having a girl. With Grace and Elise we didn’t find out but we needed something exciting to hold onto something positive. We were so happy we were having a girl. There is known better results with girls than boys so there was a small win.
Next step was regular ultrasounds. Weekly, with an exceptional Dr who had experienced MT16 in the states. We were in great hands. Weekly checks was to monitor movement, growth but ultimately placenta function. The placenta was struggling and giving Charlotte the nutrients she needed it was doing a very average job. So we were watching for absent flow. Approaching 26 weeks it was twice weekly ultrasounds and I recall them saying Charlotte was 500gs we could have her and she would have a chance to survive. Not keen on that and thankfully she stuck in there a little longer. It was a Tuesday and we had a different Dr went in for the scan and she was not comfortable with what was happening. I was admitted that day went home got a bag and came back into the hospital for my stay and what felt like the longest 10 days of my life….
Day 4 - the weather sucks
So it’s cold and raining and windy! How do you run in a head wind when you are not a runner on a calm day?So I left off at the 20 week amino. Initially for me I didn’t want to have it. I thought to myself why would I risk it, the baby looks fine and we know it’s small so why the added risk on a high risk pregnancy. But it was explained to me that we are looking at quality of life.. babies life and as a family our life. We had the amnio I couldn’t watch, hate needles so no way I’m watching that one. Then we wait… we were told 7-10 days to wait! The conversations were had between Nathan and I and they were soul destroying. If there is an abnormal chromosomes what do you do. I was always very committed to we have and love the baby however they are! But the risk we had is with an abnormal chromosomes we aren’t making it full term. We had a significantly underdeveloped baby with an abnormal chromosome. What quality of life do we have there for them. What is the right decision? I feel the baby, I have seen the scans to me the baby is perfect.
10 days and at 6pm as we were putting kids to bed when our obs carmel called us. It wasn’t good news as I heard her serious voice. She had such a warm way of delivering hard news that when told I didn’t really react. Charlotte our baby had an abnormal chromosome, T16. However it was mosaic, not all the cells are affected. Carmel didn’t have all the answers nor had ever heard of it. We were referred to a genetics counsellor and Dr and then Nathan went down the google spiral.
Do not recommend googling not ideal. Can go down deep pretty quick and looks bleak. Once the kids were in bed we got time to process what was told and right now I still can’t remember how I felt. I was just in shock and clearly I’ve blocked that time. Other than sad so very very sad and heartbroken. But we have another appointment with genetics they will give us the answers we need.
The genetic counsellor called me and it was like an angel through the clouds. She didn’t say anything inspirational or but she was warm and reassuring and gave us a path to take to focus on until the next decisions had to be made. Let’s get the info let’s get the facts and let’s decide what is really happening and going to happen
Day 1 - Where it all began
Well I just did my run. Nathan is going to go tonight this arvo!3.6km in 26mins it’s not athletic but it’s done. Feel proud got it done.
Where it all began to get us here goes right back to new years 2022/2023. I was 9 weeks pregnant and on New Year’s Day started to get some bleeding, this resulted in a miscarriage and very much an outer body experience of “this is so messed up”, “how do people get through this later in pregnancy” and “now what” .
We always wanted 3 kids but having that miscarriage sent me in a spiral, was it not meant to be? do we stop at two? is this a sign? After some discussion and going to see a psych an agreement was made if nothing happens by July 2023 we are done.
This was not the case and we fell pregnant and so the story began. I went to see the MVP of obstetrician Dr Carmel! Who can not speak higher of her and the team. She delivered my other daughters so no doubt she was here for the third. We did a dating scan at 9 weeks but I was measuring 7 weeks. Something was up from that moment. We came back at 13 did the blood tests and I was low in PAPP-A… a new test to say I’m high risk of pre eclampsia! So I was on aspirin and caltrate to help blood flow to placenta. It was a long slog and stressful daily!
At 20 weeks check up before we went to major scan. Carmel had had some serious conversations that it was likely we wouldn’t make it further than 28 weeks if we are lucky and it wouldn’t be a natural labour likely C- section which was fine but it was due to the baby unable to survive labour.
At the 20 weeks check scan everything looked “normal” except size. The Dr came in and under recommendation and due to size of baby and amnio was required to ascertain why there was a restricted growth! The roller coaster was in full swing!
Day Before we Start
Nathan and I have decided to raise money for Running for Prems this year.For many reasons we wanted to be apart of this fundraiser this year.
The funds raised go towards the equipment that kept Charlotte alive for her time in hospital.
The extent having Charlotte has had on our family during pregnancy and her medical needs after has been difficult. We are so grateful to have her with us and wouldn’t change any of it for a second. It’s opened our eyes to a world of premature babies and families that aren’t as lucky as us or go through the trials and stress daily and the incredible hospital, doctors and nurses that throw everything day in and out to help us complete our families and bring our babies home.
However our mental and physical health has been hit significantly hard so we are taking the chance to work towards raising money but getting moving again to hopefully help us as a family physically and mentally.
I’ll add updates here and post stories on social media to make me accountable and or for a laugh at how much this is going to be tough to start again. Hopefully just raise money and awareness for something that has a huge impact on us and many families every day! Enjoy the ride as I’m not sure my body will!
This November I’m taking on the Premmie Marathon Challenge
I’ll be clocking up my kms in the Premmie Marathon Challenge to raise funds for life-saving neonatal equipment that will give critically ill and premature babies a better chance of survival.
I'd love your support - if you can, please make a generous tax-deductible donation here.
Thank you for your support.
Your donation will help keep me motivated as I complete my challenge through November, knowing that each km I complete is helping save the lives of sick and premature babies.
Fancy joining me? You can sign up for the Premmie Marathon Challenge too! Simply choose your challenge distance and start clocking your kms for premmie babies.
Thank you to my donors
$211
Janet Welch
$106.12
Julie Green
Well done, Em!
$106.12
Myles Murray
Such a wonderful and life saving cause. Keep running Emma and Nathan. Well done!
$106.12
Josh And Em Murray
Amazing stuff guys. Proud of the hard work and all you do for Lottie. She's so lucky to have you.
$103.72
Amy Thorne
What a worthwhile cause, I look forward to following along as you walk (run?)
$100
Michelle & David Campbell
💕💕💕
$100
Susan And Craig Jones
Good work Murrays Good luck with the running, we will be on the sideline cheering you on!
$64.67
Ian Reichstein
Well done Emma and Nathan and special best wishes to Charlotte
$64.67
Rhiannon And Dale Pedler
Love your work Emma. What an amazing inspiration you are to your 3 beautiful girls, well done!
$64.67
Owen, Rhea & Cole
You are a champion!
$64.67
Hazel And Ted
Proud of you xx
$64.67
Skye Porter
💜💜💜
$64.67
Isla & Lucy Connaughton-lock
$64.67
Danika Lewan
$64.67
The Cliffords
Amazing work Em and Nathan!
$64.67
Meisha, Paul & Otty
Proud of you! Making it look almost effortless :|
$54.12
Tiffany Gray
For two of my favourite guppies, who met under my watch and now have a family of guppies, and for beautiful Lottie and all babies like her who have a tough start to life. xxx
$54.12
Morgan, Gus, Bront And Hen
Just keep swimming Em x
$54.12
Graeme & Sue Cooper
Keep up the good work
$52.92
Jacqui, Dayton, Charlie & Casey
Great work Emma! What a fabulous cause
$45.65
Emma Murray
$42
James Xavier
Keep running :)
$33.15
Judith Delaat
You are an amazing mother, wife and friend. So proud of you. Xxx
$33.15
Generous Supporters
Your donation has been matched by Generous Supporters, DOUBLING your IMPACT for premature babies.
$27.81
Tahlia Caviezel
For miss Lottie, mightiest warrior!
$22.58
Tanya Gepp
$22.58
Cam Scott
Great work Intel!
$20
Lauren
You go girl! 💪🏼
