Milly’s Big Dreams | Website
Milly’s Big Dreams
Phone: +61 487 011 111
Reviews
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25.01.2022 On The Move Look who can now very confidently shuffle round the house! She has really enjoyed joining her sisters on adventures! ... Our physio couldn’t be more proud of her progress! For your path is your own and your own to write
25.01.2022 Let’s stand up We have been working on the skills to pull up from sitting. Milly has been working really hard And while waiting for our wonderful Pediatrician today, she did it all by herself unassitanted! ... What a superstar you are Mill Mill! #Chromocutie #20months #GDD #pegfed #awareness #grossmotorskills
24.01.2022 Surgery Day The day finally came yesterday for our little Milly to have her first operation. To say it was a mix of emotions was a understatement. Fear, anxiety, worry, excitement and pride. Milly was on the afternoon list to have a formal look down her airway, grommets in both ears and a fancy bridle in her nose. ... I was so lucky to be able there when she went to sleep. She was such a champ and as always, just melted all the nurses and doctors. I won’t lie, I think I might have got about 20mins sleep in total last night. Milly struggled post op to maintain her oxygen. A commen side effect for people with central apnea. And her resp rate was super low. Meaning docs were in and out a billion times overnight and alarms going off very 30 secs. As for results. Milly has nothing structurally wrong in her airway. Yay! However no real answers to her aspiration or swollowing difficulities. We shall continue to follow the bouncing balls but relieved that we can tick a few things off the list. I’ll go into more detail about her bridle in some coming posts, but this extra fancy hardware will prevent my little Milly from pulling her tube. Miracle Mumma #chromocutie #rarechromosomedisorder #medciallycomplex #my1stoperation #oxygen #tubie #bridle
24.01.2022 I’ve had the privilege to be looked after for all 3 of my girls by many of these ladies shown in this post, and many more. They all hold a very special place in my heart after the outstanding care and love they gave me and my babies after all required special care Thankyou Calvery midwives! Today I’m going to do some flashback photos.
23.01.2022 Amelia Update It’s been a little while since I gave an update on our Milly post Button placement. To say we absolutely LOVE it! That’s a understatement. It feels so much more natural and milly is so much more comfortable without a tube down her throat. It hasn’t been all smooth sailing thoough and If I’m honest! It’s been a bit of a up and down few weeks. Recovering from a surgery for most people takes time but when you are just that little more complex, it can be a bigge...r bump in the road. We Unfort had to present to emergancy on a couple of occasions. Very greatful that we weren’t admitted and we were able to manage at home. Both our ED experiences were far from acceptable in many ways in my view. There is just so much I feel I need to change and advocate for but I’m just 1 person! None the less. I’m HER advocate and will continue to fight for what is right. Here’s to having a healthier run as as face into our 1st family holiday in a little while. Renmark here we come! (Soon) #chromocutie #button #complex #millysbigdreams #family #strong #greatful
22.01.2022 Not all Super Hero’s Wear Capes I use this page to share much of Milly’s journey. The good, the bad and the ugly. I really want a record for my girls and Milly to look back and know how far we have come. There is so many lovely people following our path that I haven’t even met! I’m so very much greatful for the support. What I don’t share too much is behind this little resilient princess, is two big super hero SISTERS!These girls have made my heart explode and they give me... incredible comfort knowing that one day they will help our Milly navigate life when Dave and I may not be able to. Not only are they always encouraging her with so many things. Addison has even learnt to help do tape changes and assist in many of the not nice things. How many 5 year olds could hold their baby sister still while a tube is inserted?!! She sings and tells her it’s ok. It’s a special bond. They bare the brunt of many hospital admissions and just know that sometimes when they wake in morning, Mumma and Milly aren’t there. I have so much appreciation and love for these two. I’m forever greatful they are my daughters and I’m so proud! #sistersforlife #medicallycomplex #rarechromosomedisorder #chromocutie #tubie #oxygen #family #millysbigdreams
22.01.2022 Amelia turns ONE Yesterday we celebrated the most special girl. We had the most perfect day filled with so much love. ... Until the storm came in. Balloon Joy Spencer & Co Cookies Kirei handmade Cake by: @cass burr
21.01.2022 Easter 2021 Milly would like to wish all her followers a very Happy Easter! This Easter we are greatful to be able to gather and be with family. ... #chromocutie #medicallycomplex #tubie #pegfed #millysbigdreams
21.01.2022 1st Hair cut Our little Boris baby today had her 1st hair cut. I wasn’t able be there to witness it and poor Milly spent most of the session crying. but that mop needed taming! I’m honestly surprised we made it to 15months before we have cut her hair. That fringe! ... Huge shoutout to my Mum for taking Milly on one of her 1st outings without Mum or Dad. She was in very capable hands. Milly hasn’t been out of our care in 15months so today was a couple of big milestones! #chromocutie #rarechromosomedisorder #oxygentherapy #tubie #haircut #complex #freshforchristmas
21.01.2022 Wishing all the wonderful and fearless Mums a happy Mother’s Day! I was lucky enough to spend the day with the people that mean the most to me. Our thoughts and prays tonight are with those that don’t have their babes in their arms or their Mothers to call. I see you and I send you all my love. I hope you enjoy a rare photo of me and my girls! ... Addison, Ayla and Amelia! My heart and my world!
21.01.2022 Celebrating international day of the midwives! Flashback to when I couldn’t touch or hold my bubba Milly. Little did I know this would be the last time I saw her before she was transferred to the WCH without me. Hearing the words that your baby need NICU support and needs to go away is one of the hardest things I have ever heard. I couldn’t have done it without the most amazing midwives holding my hand and telling me it would be ok after I was sitting in a hospital bed alone (hubby was with bubba girl)
20.01.2022 8 M O N TH S Today’s outfit is brought to us by Kmart Australia! Thanks for styling my chromocutie today with the cutest little rainbow outfit. She is in every way our rainbow. I can’t believe you have been with us for 8 months. What a ride it has been and I would do it all again for you. ... #chromocutie #rarechromosomedisorder #unique #medicallycomplext #continuousfeeds #tubie #ng #oxygen #kmart
18.01.2022 Made for Keeps We couldn’t be more happier with our Milly doll if we tried! @made.for.keeps @millys_big_dreams ... #rarechromosomedisorder #inclusive #unique #chromocutie
18.01.2022 Just because I can’t get enough of this sweet girl! love her with all my heart!
17.01.2022 Thank you I just wanted to jump on and say a huge Thankyou to all our followers who support and cheer Amelia on! We now have 300 people following this crazy journey! Next week we celebrate Amelia’s 1st birthday. A day that will bring great joy and will be filled with many emotions. ... As many of you know, it’s been a challenging year but we made it! We made it with our friends and family and all our followers sending best wishes and showing so much love. You have no idea how much this helps me push through the bad days. We are heading into some new challenges really soon with juggling work for both Mummy and Daddy, introducing support workers and Milly’s big Peg surgery! (Yes we are sooo hopeful this is going ahead in Oct ) Watch out for the Amelia memories in celebration of turning ONE!
15.01.2022 HEC Relocation Today Milly and I were lucky enough to showcase the newly relocated HEC (Home Equipment Centre) at the WCH. Milly made her channel 7 news debut! ... Huge thanks to the WCH Foundation along with their Corp sponsors who made this relocation to a more spacious space possible. This facility is vital to keeping complex kids at home and not in the hospital. The WCH helps families bring babies home sooner on external feeding and oxygen when it would normally not be possible. To be home with your family in your own environment is the best medicine a child can have. #wchfoundation #complexneeds #chromocutie #externalfeeding #tubie #oxygen
15.01.2022 Proud Moments Due to Milly’s low muscle tone she is really unaware of her legs and what they can do for her. However in the last few months we have seen some times where she has put some small amounts of weight on her legs. Tonight she stood assisted for around 1 min! This is so fantastic and a huge step in the right direction! Her physio is going to be proud as punch! #movementmatters ... Mumma and daddy are so proud of you and how you amaze us each day. #chromocutie #strong #resilience #millysbigdreams #lowtone #hypotonia #hypotoniaawareness
14.01.2022 What a honour it was for Milly to I to participate in this this collaboration to celebrate all things premmie! Two years running These Mummas are strong, resilient and powerful and what they have endured, overcome and still navigating is inspirational. Thankyou Miracle Mumma for bringing this together! ... #miraclemumma #chromocutie #unique #prematurity #complexhealthneeds #fedisbest
10.01.2022 Steven Marshall How would you react if you were told by a emergency medical dispatch officer that they can’t locate a ambulance to attend when you child was chocking and turning blue? Milly decided today to eat something she shouldn’t (we think). For all kids, chocking is scary. For a kid that is NIL by mouth. Well! Terrifying! Many kids that’s are NIL by mouth don’t have the same abilities to get themselves out of trouble when faced with something in their mouth/throat. ... Tonight hubby was in the position where he was holding Milly, she was struggling, chocking and turning blue and no one could come. Thank you to our hard working and dedicated ambos for extending their shift, delaying their dinner plans to help. forever greatful. Tonight we got lucky! Today’s story had a happy ending and she is doing ok now. Whatever was in there dislodged and her airway is clear. The state government need to listen! Enough is enough! How many more people will die in SA before something is done.
10.01.2022 Family Update Well! Circuit breaker kinda ended up being a bit of a fizzer! If you haven’t heard the Adelaide news, basically we didn’t need to go into lockdown! We had a trip planned for some time with friends and family and with lockdown announced we regretfully had to cancel. ... But once restrictions were eased, we decided that we would push on with our family get away and I’m sooo glad we did! Can I just say! It was what we needed. (I didn’t need the panic and fights about sourcing oxygen tho! And getting told off for not following process when the whole time the correct processes weren’t offered ) but like I always say, that’s a fight for another day! hahaha. My list of fights for another day is rather long! We spent the week with some fantastic friends that we have met along the Amelia Journey who I’m so thankful for. Hayley and her complex little Addison have kept me sane many a times and I’m so thankful that our family’s have become deep friends. Traveling with our new low line button I must say was soooo much easier then her NG tube. Not having to worry about doing dodgy tube insertions on the side of road absolutely eased my anxiety. Amelia handled the heat well and really didn’t miss a beat..she is a champ. I don’t know what the next weeks will be like for Adelaide and if we will see restrictions eased further. But this little get away gave me the wind back in my wings. #chromocutie #medicallycomplex #friendsforlife #tubie #oxygen
09.01.2022 World Prematurity Day Today we raise awareness for all things prematurity. 1 in 10 babies are born too soon!... Addison Lucy (36w) 1.86kgs Ayla Audrey (36w) 2.35kgs Amelia Edith (35w) 2.02kgs Today we salute the brave babies, Mummas, Dads, doctors, nurses and the huge village of friends and family that it takes when a baby is born too soon. Many graduate with no health issues, some graduate with moderate health concerns, some graduate with serious medical conditions and sadly, some don’t graduate at all. BRAVE and STRONG #worldprematurityday #NICU #millysbigdreams #complexkids #1in10 #premmie
09.01.2022 Amelia Update Long post ahead! I’m very aware we have been on the quiet side on Milly’s page for the past little while. If I’m honest, it’s been a really tough couple of weeks and my energy levels have been at a all time low. ... Monday two weeks ago Milly was admitted for a elective admission for a special new feeding tube that goes deeper and passes through her stomach and a MRI. Unfort she wasn’t tolerating her NG and was vomitting ALL the time. A week before that she also had a fancy bridle inserted. (Not really fancy, more ugly )(a nasty clip that prevents her from pulling her tube out but when she pulls hurts her a lot) The TPT insertion all went really smoothly and Milly just aced the whole procedure. Really good post operation recovery! We couldn’t be happier. Until she started to vomit 24 hours later bright green bile! it took quite some time to get it under control meaning our hospital stay was longer then we had hoped. Unfort it was very short lived and by last Sunday our poor Milly had started to vomit again. By Sunday afternoon her respiratory rate had increased and her chest was working harder. I was left with no option but to present to emergency. ED nurse: Does she have respiratory symptoms? Well yes! I think she aspirated on her vomit. ED nurse: here, wear this mask! Lots of tests later and a x Ray to confirm increased fluid on the lungs and aspiration. We are being admitted. Because Milly had respiratory Symtoms, hospital policy says you need to go to the infectious ward! IE: the rona ward. Needless to say, our respiratory specialist received a not nice email at 3am to express my disappointment about my high risk child being exposed in the infectious ward even though mild aspiration was comfiemed on her x Ray. We then spent the next 4 days stabilizing her vomits to bring her home. No tests! No investigations future into why she continues to vomit green bile. I’m upset. I’m tired, I’m exhausted of getting my boxing gloves on each and every time. I will advocate and I will fight, but I’m tired! Our amazing paed has somewhat come to the recuse. But we shall see in the coming weeks. #chromocutie #medicallycomplex #doesnothaverona #unique #tpt #tubie #advocate #fight #giveusapeg
09.01.2022 Milly Update Diversity, love, compassion, care and inclusion are big core values for me. I’m literally heartbroken to say I’m not feeling any of this right now! I’ve been rather quiet on here. Basically things have been great and all has been pretty positive with not too many virus’ going around and minimal sickness. (There are benefits to increased social distancing and people staying at home when they are sick) all the medical Mummas know what I mean! ... We signed consent forms for Milly’s Peg around 6 weeks ago. We were lead to believe she was placed at a priority 2 but we were never officially told that. Without going into a lot of details. She REALLY needs this surgery! It will be life changing in so many ways and will help us actually get some things in her mouth. This picture is of our girl who will NOT smile with her mouth open. I ring the special nurses a few times a week. I have a great relationship with them and they have been a great support in so many ways. I would be lost without their help. I ask them every time if they know where she is sitting and how long now! Well today I needed to call for a different reason but had a really big chat about how inserting NG tubes is hurting me mentally. They were fantastic as always and I asked them to check again. A few mins later, quite a few mins later. A few questions later about when I signed the paperwork and well! It looks like our consent forms have gone into some hospital black hole! They haven’t received them back from another area and well basically she ISNT on the wait list. I don’t know what to do now! I have brought the issue to the attention of our special team that will hopefully follow up. But yeah! What a waste of time and effort it all feels now! I’m nothing short of guttered! What upsets me the most. Is this incredible little girl isn’t the most important person to them and they could just be so careless with her documents!
09.01.2022 Happy Birthday my little rainbow Thankyou to everyone following this crazy, wonderful journey
09.01.2022 She is a Great Candidate Today we had our long awaited appointment with the gastro specialist in Adelaide to discuss Milly’s long term feeding. It’s no secret, but Milly will struggle to eat food for quite some time. (Years even) and it will be one of our biggest challenges in the future. ... But today I heard the news that just made me so relieved. ‘She is a great candidate’! After dealing with multiple tube pulls a day and the trauma to both Milly and I. The doc has agreed that we can start our journey to a gtube (or peg) there is a few different terms used. This peg will go directly into her belly and she will be able to fed without a tube in her nose! (Yes yes yes)!!!!!!! He did say that we need to try and sort out a few things first before we can look at her surgery, one being her continued vomitting/spilling/reflux. We are now on a new medication. 3 in total now!!! Gahh! So we shall see how we go with that over the next month or so. Today we were due for a tape change and bath. We decided on bluey today. She was so buggered from her bath that she fell asleep during the ordeal! Normally it’s hesterical crying, so today we won! A Simple Patch #millysbigdreams #medicallycomplex #gastro #peg #feedingtube #rarechromosomedisorder #chromocutie
08.01.2022 1 0 m o n t h s What an up and down month we have had little fighter. 2 admissions to the covid isolation ward, lots of docs appointments, lots of tears advocating and lots of celebrations too. So pleased that we have finally signed consent forms for your PEG to be pleased in the future. (A little tube in Milly belly to feed) Unfort it’s a long wait list but our time will come. ... We also received wonderful news that we are now going to be looked after by the complex care team at the WCH. We have had some challenging moments over the past few months and I’m so happy and confident we will have a wonderful nurse looking after us and fighting in our corner when needed. She is such a breathe of fresh air. In a couple of weeks, we head into admission 10 to have your tube pulled back in the tummy. (Currently it’s deeper to help with vomitting) our Gastro specialist wants to challenge our Milly and challenge her reflux and see if she will start tolerating better now she is just a little bit older. Fingers crossed! You are my biggest challenge and my biggest light! I love you deeper then I ever imagined and you have taught so much in your short 10months.
07.01.2022 PEG Journey After spending a large portion of time in the last little while in hospital, I’m very happy to report we have been having a very good run at home and have been healthy! This week we see a private gastro specialist. after being increasingly frustrated with the direction our public specialist has provided. ... We are really hoping for a plan moving forward to having her converted to a long term feeding option. We are really hoping we can start the ball officially moving toward a PEG. She deserves this! She deserves to have her face and throat back. She deserves to not have people stare at her and she deserves to not be in pain! Please pray this specialist will help us move forward! This Mumma will advocate hard for what she needs because that’s what medically complex parents do! #chromocutie #rarechromosomedisorder #unique #peg #tubie #oxygen #tpt #shedeservesbetter #advocate #medciallycomplex
04.01.2022 Milly’s fav tapes! if you have a tubie, we recommend these!
04.01.2022 So much cheek! Cords are NOT toys! Loves her doggie she was gifted from the WCH foundation. #chromocutie #complexneeds #buttonfed #cheeky
04.01.2022 I’m already a bawling mess Thankyou for choosing us baby to be your parents. You have made me a better person!
03.01.2022 2020 Circuit Breaker From midnight tonight, Adelaide is forced into lockdown. We need to act hard and fast to control our worrying clusters of covid 19... We will be officially in lockdown for the next 6 day with advice after this to follow. I know these restrictions are hard, even beyond hard. But I truely believe and trust in our health experts when they released these restrictions. I have spent most of the past 3 days in a mess of worry. Milly catching any virus is but covid! I would hate to think! We all know what we must do! #wearamask Let’s break from one another now so when we come together again in the future, no one is missing. Do it for the compromised and high risk. Please do it for our Milly! Please share this post far and wide and get the message out! #stayathome #curcuitbreaker #2020 #covid #compromised #highrisk
03.01.2022 THROWBACK TUESDAY Back when I was all of a week old and high on caffeine! Just like her Mumma! #chromocutie #rarechromosomedisorder #unique #NG #premmie #specialcarenursery #calvery #caffeine #bardicardia
01.01.2022 Throwback to our time in the special care nursery while we celebrate international day of the midwives. This photo was sent to me one night after I had gone home to be with the older girls. Amelia did a great job with her bottle and was melting all the midwives. Julianne Wilksch was so proud of her achievements, she just couldn’t wait to tell me. We were very lucky to stay in the SCN at Calvery. Quite often, the babies receive 1:1 care and so well looked after.
01.01.2022 Milly along with her family would like to wish all her followers a very Merry Xmas! Milly had a wonderful day and was spoiled by being around the people that love her the most. So greatful to be able gather here in South Australia
01.01.2022 Whatever you do tonight! Watch this! Share away!!! People NEED to see this! #medicallycomplex #millysbigdreams #laugh #kind #rarechromosomedisorder #oxygen #tubie #unique #bellylaugh #cutie
