Amanda Maree Photography » Amanda Maree Photography - Brisbane Newborn Photographer

Dear Unsettled Bubba…..

It’s every photographers dream that a newborn sleeps their entire session, that they are calm & relaxed, and happy to be posed into every position and every gorgeous prop. I’m sure its every parents hope that it happens that way too! But in reality, it often doesn’t, and nothing makes me sadder than when parents get upset because their little one wont settle. I’m not just a newborn photographer….I’m also a mumma as well, and I’ll have you know that my little one barely even blinked his eyes shut during his entire newborn session. I felt dreadful and I kept apologizing to the poor photographer. I felt like a failure:(I think I even may have mentioned he was a naughty baby….eeeep! No baby is ever naughty. Period. But seriously, it got me to thinking, I never want a family to feel like that when they are in my studio.

I always remember the most important concept I was explained as the mother of a newborn and I try to share this with my new families. It is the concept of The Fourth Trimester. It made perfect sense. For the past 9 months your little one has been held constantly, they have been kept safe and warm in a nice dark home, they have been fed constantly, rocked and shushed by the gentle tone of your voice and pulsing of your heart. And now, life is the exact opposite. They are naked, in a strangers home, being asked to sleep without you lovingly curled around them, and honestly, its not what they want at all!! Of course my studio is the best fourth trimester I can manage. It is warm and cosy, babies are swaddled and comforted, they are always fed whenever they ask, and there is peaceful shushing and a beating heart. But I’m not their mumma, and sometimes, they just plain don’t want to hang out with me, and that’s ok too!

Unsettled baby wrapped in pink blanket on teal fur with flower headband

Newborn sessions are scheduled in the first 14 days of your little ones journey earth side. It is done this way for many reasons. Its when little ones are generally their sleepiest, curliest and tiniest. It is those moments and those details that you want to remember, that are gone in the blink of an eye. But that is also the time in both you and your little ones lives that you are your most vulnerable, something that is of utmost importance to me.

Please don’t ever feel bad if your little one is unsettled, it is just their way of communicating their needs. I like to think my experiences as a NICU nurse, as a newborn photographer and as a mumma will help you both feel safe and comforted and loved. But sometimes even my magic tricks don’t work. Sometimes we try other things, and sometimes, we reschedule a session if a little one doesn’t feel like being photographed that day. While my focus is capturing moments of your sweet new baby, my biggest priority will always be their comfort. Nothing fills my heart more though, than when a couple comment on how comfortable they feel during their session and it’s even more flattering when I peep out of the studio door to find both mum and dad snoozing peacefully on the couch!!!

Baby girl tucked in bed yawning

During your session we will always work together to make sure your little ones transition earth side is as calm and safe as possible, including their time in the studio….And hopefully, capture some beautiful moments along the way.

Baby boy in blue dosing off to sleep

So unsettled baby…never fear….you will always find comfort with me…….

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I can’t believe this divine boy just celebrated his first birthday!! On the anniversary of our session Khalads gorgeous mumma got in touch with me and offered to share Khalads story and the journey of his beautiful big sisters that came before him. Below, in her own words, is their brave journey. Celena…thank you for your strength and courage, and for sharing your gorgeous family with me.

Rainbow baby born after loss

In May 2008 we found out that we were expecting again. Our first born was four years old (would be five) so the gap was going to work in our favour. Little did we know that we were going to need that gap as we found out we were expecting twins. Everything went very well. I had little or no morning sickness (yes I was very lucky), I would only get sick if smells set me off. I remember sitting in the OB’s office having a scan at 11 weeks and him saying ‘if there are two heartbeats still now everything should be fine. If something happened then it would be because something is wrong’. How true this would be.
At our 20 week scan we found out that we were having twin girls. That was fun to get our head around as I was pretty sure they were boys. We organised another scan for 30 weeks and then another at 34. At the 30 week scan the girls only had 100gms between them and they both looked healthy.
Fast forward to the 34 week scan. The sonographer asked me very casually when I would be seeing my OB again. I joked ‘well actually straight after here.’ He stopped the ultrasound early. Then came the words that I wouldn’t wish on anyone. ‘I’m really sorry, one of the twins heart isn’t beating’ My heart broke into a million pieces. The tears started. I had to try and get my husband on the phone to ask to come in and get me. He worked in a call centre so this was not easy to do. Now the next thing that I remember very clearly (and may seem odd but it is how my mind works), is sitting out the back of the sonographers office and the receptionist came in to see how I was coping. Asks the usual ‘Are you ok?’ and I replied with ‘No but I will be’ The next question out of my mouth made a big difference to how I dealt with the coming weeks ‘Does this happen a lot?’ ‘Not a lot but yes it does happen and not only with twins with singles as well’ ‘At least I had two’
Down in the OBs office I was told that he could deliver me that day if I wanted to but if I could wait then it would give the other twin the best chance of not going to Special care. I said I’m already coming home without one of my girls I wasn’t going to come home with neither of them. Regular monitoring was organised through the assessment unit at the hospital. This had its own set of challenges which I wouldn’t wish on anyone. Ever. Having to explain yourself when you haven’t even come to terms with the death of an unborn baby taught me very quickly to stand up for myself and not explain myself if reading my file could do it for me.
Going back in for my scan at 35 weeks was nerve-wracking to say the least. We had names picked out already for the girls and were going to wait until they were born to decide which one was which. After everything else happening we decided to do it now. Maya Rose was due to be earth bound with us and Lily Iris was going to be our forever butterfly girl. Maya was growing well and not in any danger. However she was laying across my belly instead of head down so the decision was made to deliver the girls the following Monday by c-section. The OB tried to warn me that Maya would probably go to the special care nursery if only for a little while. I said very emphatically that she would not be. He tried again to explain that she may need a little help. I repeated that she wasn’t bloody going. Shaking his head he did in all honesty try.
The team that my OB selected to help on the day were amazing. A couple of them had been through similar circumstances to me and let me know. In some ways finding out beforehand that Lily wasn’t going to come home made it a little easier. I couldn’t imagine what would have happened without the prior warning.
Into the world came a screaming petite Maya weighing in at a healthy 2.6kg (5pd11) considering she was a month early. Lily weighed in at 1.8kg. One very amazing bereavement support midwife scrubbed in and took great care of Lily for us. Prior to going to theatre we had a conversation about what we would like to dress her in. I said anything but very pastel. When we got back to my room Trish was there with photos, handprints and footprints. She also took the time to explain to Morgan where Lily was and show him the photos. Morgan would make sure that everyone got to see the photos of Lily and the prints.
Wondering if Maya went to the nursery? She didn’t. She continued to surprise everyone (except me) with even the paediatrician surprised at how well she was doing. We were discharged when Maya was 5 days old after she had spent the night in the isolette and under lights to help with jaundice.

Teal green butterfly surrounding newborn after loss of sibling

“My brave butterfly…your body may have died but your fighting spirit will forever be a part of me. For as I carried you in my womb through your life, I will carry you in my heart through mine”….we wanted to capture Khalad’s beautiful angel sister Lily in his session, what better way than her special spirit in a butterfly.

I have since had my rainbow* baby who has just celebrated his first birthday. A pregnancy after loss brings with it so many emotions. You spend nearly the entire time on tender hooks. Particularly around the gestation that something went pear shaped in the previous pregnancy. I’m very fortunate to have been part of the Pregnancy After Loss Clinic (PALC) through the hospital. Seeing the same midwife and OB at the appointments helps with continuity, add to this they know your history. So a phone call not knowing whether you are having a moment or not was dealt with in a way that I didn’t feel like I was over reacting. The people associated with PALC are worth their weight in gold.

I must say a huge gigantic thank you to Liana, Trish and Dr Rockstar. Also to the beautiful Amanda Maree Photography for my gorgeous photos and using your creative genius for good.

*A Rainbow baby is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with the aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of colour, energy and hope.

Below are some images from Khalads stunning session. I do love a creative challenge and this family gave me that with the

direction of bright and orange. Happy 1st Birthday Khalad, you were a joy to photograph as were your lovely family.

Newborn baby boy snuggled up in orange

Newborn baby boy in basket wrapped in mustard coloured blanket and bonnet

Newborn baby boy in wrapped in green nest

khalad36

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On the 12th March 2014 I met one of the most loving and beautiful couples I have ever had the privilege of knowing….more importantly, I met their divine daughter Ada Grace. I was the first pair of hands the obstetrician handed her to and I spent most of her short time by her side.  Sadly, after one week and a very brave fight, Ada grew her angel wings. In that teeny tiny week….sweet Ada changed me as a person, she changed me as a mother, she changed me as a nurse. I know she has made me better in her short time. It is with beautiful bravery that her sweet mumma and papa share her story……

They barely had a chance to say hello, when it became time to say goodbye.  Josh and Aimee Collins knew from the 19-week scan their daughter was probably going to die from an as-yet undetermined degenerative condition. Instead of taking the available option of termination, the brave couple decided they really wanted to meet her. “We don’t really know what was wrong, we may never know what was wrong with her,” Mr Collins said. They went through the full 40-week pregnancy, knowing the precious first child they were awaiting wouldn’t be able to stay with them long. “They gave us the option of terminating, but that was never really an option for us,” Mr Collins said. “We took the approach we wanted to meet her. It was really important to meet her. “I feel sorry for people who have stillborns as they don’t have time to prepare themselves. We managed to get a good 20 weeks before she was born as a chance to readjust our expectation, and that of our family too. “It would have been so much harder not knowing.” When Ada Elizabeth Grace Collins was born at Brisbane’s Mater Hospital on March 12 last year, she was beautiful. From birth, Ada was hooked up to a ventilator, and the couple only had one week to share with their daughter. But this provided them with a lifetime of memories to cope with the devastating heartache of allowing the life-support to be turned off, when it was time for her to go.

Critically ill baby girl in the NICU

“On our last night, the amazing pediatrician at the Mater came and told us there was nothing much more they could do,” Mr Collins said. “They had tried everything and she was not going to get better and we discussed reducing the level of care the next day. “We knew it was going to be a hell of a night, knowing the next day we would withdraw care. But half an hour later Ada extubated herself, she took the tube out herself. “We got to take her up to our room at Mater and have a little night with her together.” Ada died knowing only love in her short life.

Heartfelt Image of heart broken family

In the year since losing Ada….Aimee and Josh have been living life to the fullest in her honour. In August last year they opened their Alexandra Headland gastropub ‘Black Bunny Kitchen’, inspired by Ada. They chose this special name as when Ada was born she was given lots of bunnies, so it only seemed fitting that they include her in their newest family venture. Then on 21st August 2015 their lives changed again, when sweet Elizah Poppy Grace was welcomed earthside. A beautiful rainbow after the ravages of the storm.

Rainbow baby born after loss

Of course, I could think of nothing more special than capturing Elizah and creating some special memories for this gorgeous family. But a traditional studio session was not to be. Due to a number of issues, they couldn’t make it down to my Brisbane studio from their home on the Sunshine Coast, so with the help of my beautiful friend, another one of Ada’s nurses, Steph, we took the studio to them!! A four hour round trip…lots of poop, pee and vomit, mostly from Elizah, it was a day filled with love and laughs.

 

Studio on the road

We spent the day with the sweetest little princess who gave us lots of cuddles, and let us capture some gorgeous images for her mumma and papa. Ada was definitely with us on the day and I feel so blessed to be able to include her in Elizah’s session. One of my beautiful vendors heard Ada and Elizah’s story and gifted the most divine little ‘Black Bunny’ to not only photograph with Elizah but for her to keep in memory of her sister and in celebration of ‘Black Bunny Kitchen’.

Baby girl in pink with black bunny

Aimee also shared a special moment with us that we had to include in Elizah’s session…..

The day Ada passed away,  the Mater Chaplin hung around to say a prayer and she had typed up a booklet with the poem “a Symbol of hope” (about the butterfly). We ended up reciting this at Ada’s funeral and had 6 butterflies to release. Josh’s butterfly didn’t fly away when Josh opened his box, and mine brushed my hair and flew away. Josh’s one just stayed put on the box, and so I went to get it and it flew from the box onto the rose petals surrounding Ada’s grave. It stayed there for a awhile before my nephew ran over and then it just kept fluttering around and landing on the grass as it was chased by the kids.  Yesterday I took Elizah outside for a second to get some air and a splash of sunlight and there was a blue moon butterfly fluttering around. I was just pacing the decking while cradling Elizah & the butterfly landed on her and stayed there for a few minutes before flying away again!! It was so magical!!

Beautiful baby girl with butterflies after loss

“My brave butterfly…your body may have died but your fighting spirit will forever be a part of me. For as I carried you in my womb through your life, I will carry you in my heart through mine”.

Aimee and Josh….thank you for trusting in me to care for your beautiful Ada, and for choosing me to create memories with your darling Elizah. I feel completely blessed to watch your family grow and to be a part of both of your daughters lives. Thank you to Steph for sharing in Ada’s journey with me as my colleague, for helping Elizah’s session happen and just for being you. Thank you to my amazing Heartfelt colleague Stewart Ross for sharing his stunning images of Ada. Thank you to Love That Prop for making Arthur the cutest Black Bunny, I know Elizah will love him for forever!

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  • Aimee Collins - <3 Thank you so much Amanda!!! The photos are so beautiful & the memories forever precious!! Thanks for being a part of our lives xoxReplyCancel

  • Kerry Dexter - Beautiful. Words can not discribe what I am feeling now. Bless this lovely family & Amanda & Steph.ReplyCancel

Premature twins in the neonatal intensive care unit

As a Neonatal Intensive Care Nurse, I have the immense privilege of caring for teeny tiny miracles on a daily basis. Every now and then a family comes along that I feel like I have known forever. Similar personalities, similar lives, I’m not entirely sure what it is, but some families you just connect with. Caring for someones most treasured possession brings about the most intense relationship you can ever imagine. You are each reliant on each other…parents, baby and nurse. Most days I am in awe of just how lucky I am to do what I do. When that family asks you to document their journey, well, there is nothing better.

Premature twins in the neonatal intensive care unit

When Kara and Brenton decided to start a family they had no idea they were about to embark on such a journey. From the very first positive test to the discovery of not one but two little growing bubba’s, things have been a whirlwind. Kara’s pregnancy was a complete dream….in fact, the cliche breezy pregnancy, when at a mere 24+4 weeks things changed. Pains that unfortunately progressed to labour meant that Kara was airlifted to Brisbane. On the cusp of viability, Kara’s two teeny girls clung to life inside the womb and she was put on strict bed rest on the antenatal ward. All of this only further complicated by the distance between their home and Brenton’s job, and Kara all the way in Brisbane. Thankfully, the girls stayed inside and cooked a little longer but then at 26+4 weeks they made their grand entrance.

Premature twins in the neonatal intensive care unti

Ellie Rose was born at a teeny 863grams and Layla Savannah at 928grams. Both, while tiny, were fighters!!!

Premature Twins in the neonatal intensive care unit

 

Their journey through the NICU and then Special Care was not without its battles and both girls fought like the tiny perfect miracles that they are. After a humongous 61 days at The Mater, it was time for the twins to start their journey home. Another 25 days back in St Vincent’s Hospital and the girls were finally strong enough to go home to the mummy and daddy. Since that day they have both come along in leaps and bounds, growing into gorgeous healthy chubby little princesses. Now life is busy as a mumma to two but Kara and Brenton wouldn’t have it any other way.

The girls have just celebrated their 6 month half birthdays and what better way to celebrate than with a mini shoot in the studio. They packed up the car and traveled all the way down here to spend some time with me and it filled my heart with joy! It was so nice to see the girls looking so healthy and luscious from the teeny tiny girls I had photographed not that long ago in the NICU. They had other ideas about sleeping for us, but we still had lots of fun and I’m so grateful that Kara and Brenton chose me to capture some more beautiful memories for them.

 

Premature twins now six months old

Premature twins now six months old

Premature twins now six months old

Premature twins now six months old

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  • Heidi Schumacher - Such a beautiful story. It brought a tear to my eye :) Gorgeous photos and words Amanda! What an amazing famiy!ReplyCancel

  • Kara Pearce - Oh Amanda, your truely amazing at what you do. Sitting here, tears rolling down my face you’ve created this that we will treasure forever and show the girls how special they are. Beautiful words, photos and can feel the love of what you do. Sending lots of hugs and kisses – thank you from all of usReplyCancel

Beautiful couple trying for a family

Our premmie journey started before my son, Isaac, was even thought of and has been the most terrifying and amazing thing that has ever happened to me. In 2012 I had had a hysteroscopy to check on some abnormal bleeding and while we were incredibly lucky that it wasn’t anything cancerous, it was found that I have a heart shaped uterus. I was told it could lead to pregnancy problems, so, being 35 we brought forward the date of our wedding and were lucky enough to conceive quite quickly.

At 5 weeks pregnant I was put in hospital with a small amount of light bleeding and a threatened miscarriage. The bleeding   stopped and everything seemed to be progressing well. We announced our pregnancy at 11 weeks and 5 days at my boss’s request. I was on lighter duties and people were starting to ask questions. I had seen the obstetrician the night before and were told that bub was doing really well in spite of our rough start and was growing as it should be.

Two days later I went to the GP about a cat bite and found out that I’d had a missed miscarriage (with no bleeding or   symptoms) a month earlier. It was clear to her that the baby had not been doubling in size as it should have been. I had an operation and we cried a lot.

We waited a long time for my body and heart to recover but during this time I had a blood test and found out that I had a very low anti-malarian hormone (so a very low egg reserve of eggs remaining) and we were encouraged to start trying for a second baby. This time it wasn’t so easy, so we saw an IVF clinic and made an appointment to have my few remaining eggs harvested.

A week before we were due to go back to the clinic, I felt like I was pregnant. I had a blood test that said that I wasn’t, but I still didn’t feel right. Then I had a doctors surgery urine test…still nothing. I rang my new obstetrician and asked if I could use a spare blood test referral that I had laying around from my previous pregnancy and he reluctantly agreed. It confirmed that I wasn’t crazy and in fact was pregnant, but the HCG level was dangerously low and not looking promising. I had repeat blood tests every 2-3 days for 4 weeks watching that HCG slowly climb but not double as doctors would hope. For someone who was needle phobic, it was strange to look forward to those appointments because I wanted to know that our bub was still there.

Then at 5 weeks, I was back in hospital with bleeding again. Of course, we thought the worst like last time. We bought a doppler for home use and used it religiously! Unlike last time though, this time I continued to have heavy bleeding from 5-14 weeks solid. I did bed rest at home to try and give our little guy the best chance but the doctors were not very optimistic. Because we had lost our last baby with no bleeding, this huge amount made me extremely anxious and we were hesitant to let ourselves get too excited about our impending parenthood.

At 14 weeks the bleeding stopped as quickly as it had started and it was like the clouds parted and I could finally see the sun. I was told things were looking good and we had non-invasive genetic testing done. My doctor informed me with that we were having a baby boy and I surprised my husband with the news by getting a big bunch of helium balloons and attaching a tiny blue onesie. We nicknamed the baby Blip, because he was a blip on the doctors’ radar and started to relax a little and enjoy the pregnancy some more.

Things seemed to be going really well and we were looking forward to seeing our bub in 3D at our 20 week scan. I knew when the ultrasound tech ran down the hallway for a second opinion that something was off. Tears were streaming down my face by the time she returned. Not again, I thought. It was revealed that there was only the tiniest amounts of fluid around the baby and that things didn’t look hopeful. He didn’t have enough fluid to exercise in or to swallow to strengthen his lungs and this is the period where that was extremely important. The doctors thought it was likely that I had a hind leak in my waters, but there wasn’t anything that they could do about it. I was put on strict bed rest which meant leaving work as a teacher, but couldn’t explain to my year one students my reasons for doing this as I had been avoiding telling them that I was pregnant in case the worst was to happen again.

It was scary to be home alone during the day while my husband was at work.

I left the front door unlocked each day in case the ambulance needed access our home and had a catchment container in the bathroom as my obstetrician told me the baby was so tiny and my funny shaped uterus meant that there was a risk of delivering him very quickly. He said that even if I could get Blip to 36 weeks gestation, my baby would only have a 1% chance of survival & I should consider palliative care so that I didn’t have to make that decision in the moment. It was also found that Blip had short long bones and that this might be indicative of him having a birth defect or syndrome.

It was about now when I started to feel really unwell. I had a constant headache, visual disturbances, swelling of the feet and face, high blood pressure & protein in my urine. I told my obstetrician that I was worried that I might have pre-eclampsia but he told me that they would have to put me in the record books if I had it so early on. My GP wrote the obstetrician a letter outlining his concerns so they sent me to Gold Coast Hospital who gave me steroids before quickly sending me to the Mater Mothers.

Preterm Bed Rest Support

At the Mater I was put on complete bed rest and given a lot of meds to control, what turned out to be severe pre-eclampsia. I had 3rd hourly dopplers done and had ultrasounds every second day. We were told that days counted at this point and we needed to keep Blip in until at least 24 weeks or the drs may not attempt resuscitation at birth. Through all the ultrasounds it was discovered that Blip was a lot smaller than they would expect for a baby of his age and then that he had Intrauterine Growth Restriction. Each night during my midnight obs, I’d ask the nurse to change my gestational age on the whiteboard at the end of my bed. It sounds silly, but I was so determined to keep him in until a gestation where they would resuscitate him. My endocrinologist also discovered that I had sleep apnoea which may have been a contributing factor to the pre-eclampsia so a sleep study was done and I started using CPAP.

 

I made it to 27 weeks + 6 days (see, the days counted) and had my routine scan. It showed that the flow along the placenta wasn’t positive and he needed to come out…today! I was rushed to birth suite and given magnesium, which is meant to take 4 hours, but there was a non-reassuring trace so we were told that he needed to come out sooner than that. There wasn’t enough time to wait for an epidural to take effect so I had a general anaesthetic. My husband wasn’t allowed to be present and I was prepped for the procedure while still awake to minimise the time I was under. So, you see, even before our premmie was born, there’s been a journey

And then my whole World changed for the better and Isaac was born! He was a tiny little 29cm long and weighed in at just 600 grams- the same as a small bottle of water. When I woke from my anaesthetic the first thing I asked was is our baby alive. They wheeled me in to see him but I was so tired from the anaesthetic that I couldn’t keep my eyes open for long enough to see him properly through his steamy, plastic isolette. He was so tiny and red and too fragile to even be allowed to touch. It wasn’t the lovely delivery and skin-to-skin contact that I had spent my pregnancy hoping for, but he was still alive and for that I was so incredibly grateful.

Premature baby boy in the neonatal intensive care nursery

 

The next few days were extremely busy with doctors and specialists coming in frequently to see me. All I wanted to do was be with my baby. The next few days were very difficult for Isaac. We had many, middle of the night, “quick, drop everything and come now” phone calls which were extremely distressing. The phone would ring, I’d wake up, pull off my CPAP, shimmy up the bed in pain the best I could after a classical c-section to reach the phone and by the time I answered it, I’d be a blubbering mess. Over the time that Isaac was in hospital, we had had over a dozen of those phone calls and a ‘code’ was called more times than I care to remember. For the first month I carried a bag with an extra large box of tissues to the hospital with us each day because it was embarrassing having to ask the nurses for yet another box of their tissues.

The doctors then found a hole in Isaac’s little heart, which completely broke mine. Thankfully an injection of ibuprofen seemed to fix that quite simply. It seemed strange to me as for my whole pregnancy I’d avoided caffeine, all medications, beauty products…you name it, and then my baby was on more meds than I could keep track of.

On about the 3rd day it was discovered that Isaac had suffered a grade 4 brain haemorrhage . Our neonatologist had to explain it over and over to me because we were so stressed that we couldn’t process what he was saying. He was extremely patient and said that it was in the occipital lobe in the vision part of his brain, but that didn’t guarantee that nothing else would be effected-he could have profound cerebral palsy or worse. We had to decide if we wanted to continue care or change over to a palliative care model. That was the hardest decision. My husband and I both desperately wanted to be parents, but we didn’t want it to be at the expense of our little boy having a horrible life.

In the end, he had fought so hard that we couldn’t give up on him, so that made the decision for us. I remember being so scared to watch his flailing limbs and imagine if his jerky in-utero-style movements were how he would always be. I had no other premmie babies to compare him to, I’d only ever known healthy term babies, and it was so hard to know what was ‘normal’.

With the questions of what to do and were we doing what’s best for Isaac still swirling in our minds, we had a phone call on the fifth day at 4am. You know when you’re called at 4am, that it can only be bad news. We rushed in and were told that perhaps Isaac’s little body was going to make that decision for us. He had developed Chronic Neonatal Lung Disease and was needing 100% oxygen as well as nitric gas to breathe. His oxygen saturations in his blood were critically low and the doctor said that there was very little else that they could do for him. They suggested that we call in the family to meet him if they hadn’t already and to get him baptised if that was something that we were wanting to have done. I noticed that the our room of the intensive care nursery only had one other baby in it, and I couldn’t help but wonder if that was because it was upsetting the other parents to see and hear me cry all day long. We were blessed enough to have Heartfelt photos taken by one of the nurses who was fortunately working in our room and I cried more than I thought was humanly possible. Our neonatologist paged a physio to come and see Isaac who was very familiar with him by now. She took out the tiniest little resus mask that you’ve ever seen in your life and used it to do cupping on his tiny chest. By the afternoon he was saturating the best that he had since birth and we knew that we had to support him to keep on fighting.

We then moved into Mater’s Reg Leonnard House (a bit like Ronald McDonald House) and stayed there for the next 5 months. My husband took 6 weeks off from work and after that would commute every day between work and visiting us. It was difficult living apart but there was nowhere else we would have wanted to be than with our little man. We were spending 15 hours + by his side and didn’t want to leave for anything. I pumped milk for him sitting by his humidicrib. My supply wasn’t the best for so many reasons…the placenta hadn’t been working, I didn’t have a third trimester, he couldn’t have any skin to skin contact with us, there was no latching and we were so incredibly sad, that it made it hard to get a letdown. Over the coming months I got mastitis 6 times but was determined that with the help of the fabulous lactation consultants I would press on. Any little bit would help his immunity and so I pumped for up to 8 hours a day, sometimes for as little as 6 mils. When I was pregnant I had researched all about becoming a milk donor and was a perfect candidate (never smoke, drink, do drugs, had all my blood tests done) but instead I was the very grateful recipient of donor milk for my boy.

Premature Baby Boy

Isaac had half a dozen blood transfusions after that and it was also discovered that he had stage 2 zone 2 Retinopathy of Prematurity in his eyes. He had weekly and sometimes twice weekly eye exams and was considered borderline for needing laser treatment to prevent blindness. Those eye exams were horrible-I would hear him from the other end of the corridor and he was always so upset afterwards that he would go backwards in his breathing and heart rate for a day or two.

Isaac moved onto CPAP ventilation and was finally weighing a kilogram. We were as proud as punch! Then one night he was extremely unwell and we were called in again. The doctor on duty had to turn his airway pressure up extremely high, and they reintubated him. It caused him to develop 2 inguinal hernias, but it saved his life, so we were still incredibly grateful.

Isaac was moved to intensive care level 2 at about 11 weeks after birth. He was getting much bigger in size but was still needing a lot of breathing support and the doctors were not sure why. He had experienced two collapsed upper lobes in his lungs by this point, but it still didn’t explain why he wasn’t improving. It was then that we found out that he had Pulmonary Hypertension. Dr Google told me about the poor prognosis that this often comes with so I asked our neonatologist who explained that the disease used to have a fifty-five percent mortality rate, but that since a new medication was introduced, it was now only sixteeen percent. Even sixteen percent was a hard number to hear, especially because our bub had severe projectile vomiting and found it hard to keep his all-important meds down.

The meds seemed to help though and after ten weeks in Intensive Care Level 2, we were transferred to PICU at Lady Cilento Children’s Hospital. We spent a week there and then got transferred to babies ward. This was a real advantage as I was able to room in with Isaac and do a lot more of the normal ‘Mummy things’. Here Isaac worked a lot on his head strength, core strength, grasping and tracking with his eyes. His breathing started to improve and he was able to spend some time on low-flow oxygen.

Preterm Baby Transferred Hospitals

The reflux continued to be problematic and so he had a barium swallow test to check for a condition called Pyloric Stenosis. It was extremely traumatic for Isaac with four people needing to pin him down and despite my best efforts, he hasn’t wanted to bottle or breastfeed since. He is now fed exclusively through a nasogastric tube hooked up to a feed pump. We are experimenting with solids, but it is very gradual process.

We spent 13 weeks at Lady Cilento before being transferred to Gold Coast University Hospital. We were at the Paeds Ward there for about 6 weeks…but on the 10th of July, after 41 weeks in 3 different hospitals …he came home! We’ve had a lot to learn with using an at home feed pump that attaches to his naso-gastric tube, using oxygen tanks and administering meds but we couldn’t be happier and are so happy to finally be at home and living under the one roof again. Even the four loads a day of laundry (minimum!) can’t wipe the smiles off our faces!

We still don’t know what the future will hold for our little man…whether he will ever walk, talk, see or feed normally but we are doing everything in our power to help him and are seeing as many specialists as we can to learn more that we can work on with him. We feel incredibly blessed to have him in our arms and feel sure that our Angel Baby has been watching over our Rainbow.

Rainbow Baby Image

 

Preterm Baby with newborn photographer

We had the incredible privilege of having a photo shoot gifted to us by the amazing Amanda Maree Photography. Because Isaac spent the first 10 months of his life in hospital, we never got to have a ‘newborn photo shoot’, but Amanda has managed to do just that for us with our gorgeous little 11 MONTH OLD!!! We first met Amanda when Isaac was in the NICU because she was our talented nurse who cared for our little man (and us) on his darkest day. She took Heartfelt photos for us then and those are images that I cherish the most and look at when things are tough and I need to remember just how far our little miracle has come. Because of Isaac’s supplemental oxygen and him being fed through a naso-gastric tube, we don’t often get to see his whole face without it being covered in tape and tubes, but with Amanda’s skillful photography and nursing skills, she achieved just that-and now we have those images to look his beautiful face every day from here on in! Isaac is still very fragile and my husband and I knew that we couldn’t trust just any baby photographer to be able to monitor his oxygen and to pose him in ways that wouldn’t compromised his breathing. Amanda was able to do both of those things, and hey…how many photographers can insert a stomach tube back in at the end of your session for you? If anyone is looking for a baby photographer, I can’t recommend Amanda Maree Photography enough! She is the kindest, most talented photographer that I’ve ever met and is a photoshop wizard too-you can’t tell in our photos but Isaac has really sore little cheeks from all of his daily tapings and eczema on his tummy too, all of which she made vanish! Thank you so much Amanda Maree Photography, we cannot thank you enough for all that you have done!

 

Baby Boy in mint green bonnet in basket and bowl

Baby boy in mint green basket Baby boy in brown basket with knitted bear

Baby boy in blue bonnet

 

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  • Carrie - Hugs and love to you all!
    Thank you for sharing….such a brave thing to write this.
    Such love to you darling xReplyCancel

  • Sharon Hindle - What a beautiful, heartfelt story. Melissa, you’re so brave and strong and Isaac is incredibly lucky to have you. Well done Amanda…a story beautifully told through your amazing pictures.ReplyCancel

  • Grace Hillier - He looks so great guys! So big and he looks so happy!! I hope he continues to fill your life with joy, he is so incredibly lucky to have such strong parents!ReplyCancel

  • Rebecca Ramsey - So proud of this gorgeous little man! Amazing photos Amanda, and what a beautiful story mumma! So happy this little man is doing so well! What a fighter! ☺️ReplyCancel

  • Nicole - Looking so big Issac! He’s looking very good!
    Lovely parents & great photographer.
    Remember at Christmas Mel we got you to wrap our secret Santa boxes lol. Putting your teacher arts & crafts to work.ReplyCancel

  • Kylie Scovell - What a beautifully written story Melissa, you could publish a book in the future for other parents of children with a traumatic start/journey. It brought me to tears, I can not believe what you have all gone through. It would have changed/challenged/strenghtened you both as individuals forever. Our baby Jessica was on breathing support in Nursery for only a couple of days and I found that distressing so I can not even come close to imagining what you have and still are going through. Sendinging you love and positivity for the future. – Incredible talent AmandaReplyCancel

  • Corrine Kenway - Oh my dear Mel, My heart is broken and I blink away more tears as I write this after sobbing whilst reading your incredible story. I can’t imagine the pain your family has gone through, he’s the most beautiful little man and I pray that the outcome of all this is good and your journey of pain and anguish becomes filled of more positive stories for you. I always knew you were special and obviously so did Isaac to fight so dry hard to be with you and Daniel. I can’t find the words I want to say but know that I send you all my love and thank you for being able to share this incredible journey with you.ReplyCancel