Stella and Sam

Guest blog by Theresa Miloseski, mum to Stella and Sam, as shared at the Tiny Sparks WA 2015 Gala Dinner

Good evening.  I am honored to share some of our journey with you.  Robert and I are no strangers to the awfulness of trying to conceive.  We were overjoyed when our final IVF attempt was successful in a pregnancy lasting beyond the first trimester.  Our 20 week scan was perfect so we were a little unsure as to the discomfort I experienced one night in March 2012 – back pain and a bit of a leaky bladder –but hey, that’s normal isn’t it??

 I went to work the next day and placed a call to my Obstetrician.  I was busy doing board papers for the Board meeting but he asked me to call through for a quick check up.  I never did get to finish those Board Papers.  I arrived at my Obstetricians and after a brief examination, he broke the news that my membranes had ruptured and I was about 4 cms dilated. I had never heard of the term P-PROM and so it was not on my radar at all.   He explained he was going to call an ambulance to take me to King Edwards. I was 22 weeks pregnant.  I asked the midwife, what her chances of surviving were, she shook her head and told me how sorry she was but she wouldn’t survive if born now.  We were expecting a baby girl you see, we had already named her Stella.  I called Robert and tried to tell him what was going on but I couldn’t speak through the tears so I handed my phone to the midwife who filled him in and asked him to make his way to King Edward Memorial Hospital immediately. 

Outside I could hear sirens, not surprising as we were opposite St John of God Hospital, I had no idea that the urgency of those sirens was for me.  My Obstetrican had rang ahead and spoken one of the Neonatal Doctors and advised him of my impending arrival.  I was taken into the Labour and Delivery Ward and assigned a small Observation Room.  Robert arrived and we waited.  I had no idea if Stella was alive or not. 

Two neonatal doctors arrived to talk to us about our options.  They spoke to us both at length about the mortality rate for premature babies beyond 23 weeks and what we can expect if we do give birth so very prematurely.  Our aim was to get me to 24 weeks…23 weeks if necessary.  Questions were asked, answers were given.  There was nothing rosy about giving birth this early.  I’m not sure if we were to make the decision there and then but we all agreed to aim for 24 weeks.  One of the Neonatal Doctors discussed loosely with us the possibility of intervening say if she was born at 22+5 weeks and looking viable. Our heads were spinning.  We had so much information to process and think through.  I think Stella was listening.   I let Robert deal with telling our families.  I couldn’t face it without breaking down.

The next morning my Obstetrician came to check me over and realised no scan had been done, so I was raced off for an Ultrasound.  My heart was in my mouth but the scan revealed that Stella was not only still alive but still surrounded by fluid, which meant that I had not lost all of my amniotic fluid.  Our happiness at this news was short lived when I was faced with the inevitable task of choosing an outfit for Stella should she be born in the next couple of days.  The outfit I was choosing was for photos of her and what she would be buried in should she pass away.  How do you choose an outfit that you will be burying your child in?  How?  I don’t know.  I finally chose one and it was allocated to a cupboard next to my bed.  Dolls clothes, we were going to be burying our daughter in Dolls clothes.

The days merged into one of bedrest.  I was very sick with an infection of my waters.   Four days after my admission, my waters broke fully and my Obstetrician was called. I remember saying to the nurse if she is born tonight to please, please tell them that we want her resuscitated.  I was given a steroid injection for Stella’s lungs and we got through a very sleepless night.  My Ob came to see me first thing in the morning.  Another scan was done and Stella was still alive although she now had no fluid surrounding her.  Another injection of steroids was given and my Ob disappeared for the morning and came back around lunchtime to induce me and in that time we were waiting to have her the Neonatal team arrived to set up the bed that Stella would be placed on immediately after her birth.  They disappeared for a while but came back closer to the time of delivery.   

Stella, just born

Our beautiful daughter Stella Arielle was born at 6.13pm on Monday 19th March 2012 at 22 weeks, 5 days gestation, weighing 440 grams which is about the weight of a can of baked beans and was 27cms in length, with a head circumference of 19cms.  She was handed to the Neonatal Doctor and he worked his magic on her by hooking her up to the much needed life support equipment.   I asked Robert to take photos, lots of them as we had no idea what was going to happen with Stella.  He ended up handing the camera to one of the nurses so she could take those first precious photos after she was born.   She was like a little tiny doll, transluscent with her eyes still fused shut.  The Neonatal Dr stopped very briefly and allowed me to see her before they took her to the NICU with Robert following.

Robert made his way back to me eventually and with the help of a nurse, cleaned me up.  I was able to have my first shower in 5 days.  We both tried to process what had happened.  We had no crystal ball, so we had no idea of what to expect, but we didn’t expect what was about to happen next. 

Just a few short hours later the same Dr who was at her delivery and another of his colleagues came into our room and basically said I’m so sorry, we have done everything we can but it’s not looking good, we don’t think she is going to make it.  Do you want to get her Baptized because if you do, we can organise our Chaplain to come now.  I couldn’t stop crying.  I managed to indicate to Robert to call our Parish Priest Fr Joe who was not far away at St Josephs in Subiaco.  Rob placed a couple of calls to my family and his family to update them and the prayer circle for Stella began there and then. 

I was put in a wheelchair and made my first trip down to the NICU to see our baby girl and to spend what we thought would be our last time with her.  She was covered in plastic.  I didn’t like the plastic. How can she breathe in plastic? I was panicking and was insistent to the nurse that she couldn’t breathe and she needs to take the plastic of.  The nurse was trying to reassure me that the plastic was keeping her warm and she was breathing because she was ventilated through the mouth. 

Fr Joe arrived and I calmed down.  We baptized Stella there and then. We must have looked a slightly odd sight all crowded around her isolette as he gently baptized her with a cotton bud dipped in Holy Water.  We were told to take it hour by hour. We eventually made our way back to our room and spent a sleepless night waiting for the bad news to come.  But it didn’t…and morning came around and we went to see our very sick little baby girl still fighting, minute by minute, hour by hour.  We were told that she was writing the book, this was a first for them and so she was dictating the story. 

We kept on putting one foot in front of the other and spending as much time as we could with her.  Our life became routine.  There was no improvement, there was weight loss, blood transfusions – 2 in the first week she was born and regularly thereonin, there was a nasty open sepsis wound on her back which will be one of many scars on her body in the time to come.  Her foot was squeezed daily for drops of blood from the heel pricks that they do to test her levels.  She was in a critical condition.

A couple of weeks after she was born we were ushered into a windowless room outside the glass doors of the NICU where we were told once again that they couldn’t do much more for her.  She was on maximum ventilation and her lungs were just not coping.  Did we want to leave her to slip away peacefully as she was or did we want to try her with Dexamethazone to try wean her off the ventilation she was on.  The steroids had no guarantees of working and would more than likely come with horrible side effects which would affect her later on in life, if she did indeed live.  We chose the steroids.

That night I spoke to her for hours. I told her that if it was too much for her and she was too tired to fight, that we loved her and it was ok to go. She would be the brightest star in the sky and our heavenly angel.  I told her that the Baby Jesus was with her and I gave her permission to stop fighting.  Every time I mentioned this, her oxygen saturation level on he monitor would rise.  The nurse told me to keep talking to her about whatever it was that I was talking to her about as it was working.  She survived the night.  Hour by hour, day by day. 

Stella 5 weeks old, our first cuddle

Three weeks of Dexamethazone and she was eventually weaned of the HFO and Nitric to CPAP.  38 days after she was born and weighing 530 grams we finally got to hold Stella for the first time.  Prior to that, she was simply not well enough.  I was so scared I was going to hold her too tight. I cannot describe the feeling of holding her, possibly one of the best days of my life.  I felt like a Mother, I hadn’t felt like a Mother up until that point, you see.  We weren’t allowed to hold her for a lengthy period of time because it was using up all her energy but that first cuddle was the start of many more to come.

Stellas stay in the NICU included Anaemia, Jaundice, Sepsis, eight blood transfusions, Golden Staph, Lumbar Punctures, multiple medications for all the infections she was fighting, Daily heel pricks, head scans, heart scans, eyetests for ROP of which she had Stage 1 and more.  Stella was in hospital for 153 days in total.  She left hospital oxygen free but with a condition called Chronic Lung Disease due to the long time she was ventilated.  This has seen her admitted to hospital for oxygen support many times over the past 3 years.  I cannot praise enough or thank enough the absolutely amazing team at King Edwards for quite simply saving Stella’s life.  I am eternally grateful.

During our time in the NICU, we were made aware of some support groups specifically for families of premature babies.  We were given details of websites to peruse in the hope that we could make sense of what was happening on our NICU journey.  I was very privileged to have met some of the Founding Members of Tiny Sparks through one of these support groups and their support and friendship was immediately welcomed by Robert and myself.  We are all blessed to have these wonderful families doing the good that they do.

The NICU journey is so very hard, it’s painful, it’s frightening, overwhelming, lonely and can quite honestly do your head in.  Tiny Sparks are the kind of support group you do want to have by your side on this journey.  I honestly wish they had been around when we were going through our NICU journey.  The packages that they provide to not only those currently journeying through the NICU but to those on bedrest are essential.  Their online support pages and quick response are reassuring to the many men and women who are facing their own journey.  Thank you Tiny Sparks.

These ladies were amongst the very same group of friends I called on when I found out I was spontaneously pregnant with my second child only a couple of short months after Stella came home from hospital.   Our joy at being pregnant was quickly filled with fear.  I would wish no-one to go through what we had gone through with Stella. We were one of the lucky ones because we got to bring Stella home with us, many don’t.  How could we survive going through this pregnancy given my history?  Age was a factor, I had Stella at 43 and I had a couple of months ago turned 44, so having another baby was not on our radar.  I sought an immediate appointment with my Obstetrician who was very shocked and cautious.  We decided that we would wait and see if I could sustain the first trimester.  He suggested progesterone pessaries if I do last the first trimester.  We survived the first trimester and so with daily progesterone and regular scans I made it to 17 weeks before I had surgery for the placement of a cervical suture. 

I was under house arrest with the instructions to not do too much, no lifting, straining, or anything that could jeopordise my pregnancy.  It was very hard to keep to the rules as I had a very active crawling Stella to entertain.  Regular support check ups by the Tiny Sparks ladies kept my spirits high.  Tiny Sparks was being formed during this time.  At the 20 week scan we found out we were expecting a boy.  The stitch was holding well and the progesterone was doing its job!  It was a hard pregnancy to get through.  I was filled with fear every single day that our beautiful boy would come early. 

Sam just born and cuddles straight away

I am very grateful for the support we received from the premmie community that surrounded us.  Samuel Robert was born on 19th June 2013 via caeserian section at 36 weeks 6 days gestation and weighing 2.8 kilos.   I can’t tell you what it was like to feel like a real Mum, in hospital with her baby by her side. It was just the best feeling.

Stella and Sam growing up together

I would never have made it to 36 weeks with Sam if I hadn’t had the daily progesterone or the cervical stitch.  We are so thankful that the incredible team at WIRF are leading the way with the initiative of preventing preterm birth in the Whole Nine Months.  I would never wish anyone to go through the NICU journey.  It was without a doubt the hardest experience that Robert and I have ever faced in our lives.  That said, if it wasn’t for our journey we would never have met so many incredible people, most of whom I happily call our good friends… eg. Jackson is a little ex 26 weeker who was next to Stella in the NICU from when he was born for a few months.  Side by side they used to cheer each other on.  Three years on and their bond is unbreakable, as is our bond with his parents. Our tiny sparks come in varying degrees of gestational age and sickness.  No one baby is more precious than the other. They are all special, they are all fighters. 

Robert and I 100% support the Tiny Sparks community and the prevention of preterm birth through WIRF and I hope that you all support them to. You never know when you or someone you love will need their support. Thank you for letting me share some of our story with you.

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Olivia's Story Part III (Remainder of NICU and Homecoming)

Now on CPAP and IV free, Olivia’s journey from weeks four through to her eventual homecoming are a much different story to write than that of her birth and first three weeks in NICU, although still an emotional and difficult one (see Parts I and II here).

Dan (my husband) returned to work after those first three weeks and so we started a new routine for visiting the NICU. Dan would go in either before or after work at least every second day and all day on weekends, I started driving myself in Monday to Friday. We would visit together on the weekends.

Olivia had a new neighbour during week two (we were in a pod of only 2 beds and had been by ourselves for a little while) and in the following weeks I had started talking to the baby’s mother, who would become the best company anyone could ask for in the situation, and it helped immensely when Dan had to return to work. The new baby’s mother had a previous premature baby and was a wealth of knowledge for me on expressing, routine, and what we could eventually expect when we were discharged. I will forever be grateful that our babies ended up as neighbours and that I made this new friend.

Over the next few weeks Olivia’s care and management consisted mostly of winding down her oxygen and CPAP requirements (from higher settings to lower settings) and trying to have her gain a good amount of weight. Calories were added to my expressed breast milk and on day 33 Olivia finally reached the magical 1kg mark! I had called in the early hours of the morning to check whilst awake expressing (as they weigh the babies overnight) and was so delighted to discover she had weighed in at 1000g exactly, they checked it twice! I bought in a home made caramel slice for the staff and bought a little stuffed giraffe from the gift shop for Olivia. I made a ribbon collar for it with a tag saying it was for reaching 1kg, and the giraffe is one of the many special keepsakes Olivia will have for her lifetime.

At four weeks and six weeks Olivia had blood transfusions numbers two and three (of four that she would have in total). A few days after her transfusion at six weeks Olivia’s CPAP could be turned down to its lowest setting and on day 49, at 32 weeks 3 days corrected, Olivia was able to try cycling from CPAP to PBF (oxygen via nasal prongs) for just one hour to start with. It turned out to be a big week for Olivia, on day 52 her feeds were moved from 2 hourly to 3 hourly and we also discovered that she was carrying a strand of e-coli that was mostly antibiotic resistant, picked up from another baby in the nursery. This did not make her sick, but did have the potential to, and contact precautions and restrictions on her movements through the nurseries were enacted. We were not allowed to progress normally through the nursery (to HDU and ‘Two-west’ etc) due to the contact precautions required.

Day 55 saw Olivia transferred from her humidicrib to an open cot for the first time and day 56 saw Olivia have her two-month vaccinations whilst still in NICU! I came in to the nursery at 4:30am to make sure I was there to hold her hand whilst she had the injections, I felt it was one thing that the NICU experience was not going to take away from me as a new mum, my rite of passage in holding my two month old baby whilst they got their first needles.

That weekend we received a phone call to say that Olivia would be in nursery two when we came in to see her next, they had to conduct a rearrangement of the babies carrying the e-coli bug and had set up a new quarantine area in nursery two. We were very excited at first as it felt like a ‘graduation’ of sorts, however my excitement soon turned to a couple of emotion filled days as the change impacted me more than I realized it would, or that anyone warned that it might. After 58 days of becoming used to one spot in the nursery and knowing every nook and cranny of that spot, the view out the window and the timing of the doctor’s rounds, this was suddenly rearranged and it hit me quite hard. In hindsight it is easy to describe why it was such a change, but at the time it was much harder to reconcile my emotions about the move and a tough couple of days ensued. Fortunately, Olivia’s neighbour and the baby’s mother moved with us, and her friendly company once again helped me. The feeling was mutual and she told me one day that the company and conversation was so helpful to her; we’re still in contact two and a half years later.

Although the physical move to nursery two came on day 58, Olivia became a nursery two level baby on day 71 (at 35+4 weeks corrected), when she was removed from her CPAP full time (remaining on PBF full time), had her caffeine medication ceased and her cardiac monitoring removed. This milestone also coincided with us being able to give Olivia her first proper bath at 10 weeks old! 

Olivia looking a little unsure about her first bath

One of the most difficult things about the last part of any NICU baby’s journey, as any parent will attest to, is that there is no way of telling how long it will be until the end. Also, the fact they become, act and look healthier and closer to ‘normal’ newborns means that you can’t help but consider tucking them under your arm and insisting that you can handle things at home! The nursing care becomes less intensive (higher baby to nurse ratio) and the process generally becomes frustrating, a lot more frustrating.

It wasn’t until day 90 that Olivia was finally oxygen free, although we were grateful this was before her due date (at 38+2 weeks corrected), it had been a frustrating journey to that point as there had been a change of consultant in that last fortnight and different parameters had appeared to be set as to what level of de-sat would require her oxygen to be reinstated (I refer to the above paragraph detailing frustration!).

The remaining hurdle Olivia needed to master after her oxygen was removed was suck feeding, and on day 98 after a few days of having three suck feeds spaced by only one tube feed, the decision was made to remove Olivia’s feeding tube and see how she would go on all suck feeds! It was a success (just!) and on day 100 we were told that Olivia had met all the discharge requirements and was ready to go home! It was a Sunday morning and believe me, I was ready for this moment. We had installed the car seat and packed a nappy bag that week, I was ready to break out! The consultant then casually said “although, Olivia is booked for an eye exam on Monday night, perhaps you should stay until after that.” (Eye exams were required to assess for ROP, a product of prematurity and prolonged oxygen requirement. Olivia had stage 1 ROP which self-resolved).  

It may have seemed fairly insignificant to the consultant to ask us to stay another two days with Olivia, and with a justifiable reason for doing so, but I’m sure every parent of a premature baby knows exactly what I would have been feeling at that moment!! “Another TWO DAYS, are you serious!?” (Yes, again refer to the paragraph on frustration!). We reached a compromise, which was that we would be immediately transferred to a mother-crafting room (where I would be able to stay overnight with Olivia for the first time ever) and stay two nights there until after the eye exam.

It was a surreal experience to be left alone with Olivia after 100 days of never having once been alone with her. There were no monitors, no nurses, no noises, it was just us. Unfortunately Dan couldn’t stay with us overnight, but he did stay until late evening each day and go home just to sleep. On day 101 we celebrated both Olivia’s due date and our wedding anniversary in the mother crafting room, after a night of four hours broken sleep (which I thought was a great effort!). My heart raced every time someone knocked on the door, I was still fearful that someone was going to announce there had been a mistake and we had to return to the nursery! After such a long time it still hadn’t sunk in that we would actually be taking Olivia home. But no one did. That evening Olivia had her final eye exam in hospital and the next morning we were told we could leave!! We tucked Olivia in to her pram and paced around the room whilst we waited for her discharge medications from the hospital pharmacy. Once we had those we wheeled Olivia out of the room and down the corridor… it was the most surreal feeling in the world and I must confess to still welling up with emotion every time I think about it! For me, the homecoming day is the most special day of the whole NICU journey and the joy I feel when I hear of any baby coming home (not just Olivia) is overwhelming!

Olivia weighed 2.6kg and measured 46cm on her due date. 

Dan was fortunate enough to be able to take another three weeks off work when Olivia came home and so we made ourselves comfortable and soaked up the start of our new lives at home for that time. We were both so much in love and no amount of sleep deprivation, vomit or poo explosions were going to stop us from thinking that this was the single best thing ever!

Olivia took a very slow and steady approach to weight gain and was mostly off the bottom of the weight curve for her corrected age, but was otherwise healthy and a generally happy baby. I was extremely strict with the health of visitors to the point where we simply limited the number of visitors quite heavily for the first few months. I wasn’t keen on passing Olivia around for cuddles and trips out to public places were definitely off the table. It was a hard line approach and was isolating at times; it is one primary aspect of the ‘NICU journey’ that doesn’t actually end when you leave hospital. That, and the volume of specialist appointments that need to be attended!

However I do not regret being so strict as Olivia’s health thrived and she has not had one hospitalisation since her discharge. Two and a half years later, Olivia is still petite but otherwise a picture of health and developing on-track for her corrected age. She has just finished Level 1 ‘Surf Babies’, loves drawing, playing in sand and Peppa Pig! She is a strong willed and determined girl, no doubt a product of the battle she fought so very early in her life!

Above (L to R): Olivia in her pram on discharge day; Leaving the mother-crafting room; Olivia now.

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Her Battle Begins – Olivia’s Story (The first three weeks of NICU)

Part II of III - Part I "Code Blue - Olivia's Birth Story" can be read here

After she was born, Olivia was taken immediately to NICU and my husband (Dan) was told he could see her about 15 minutes later; it was the first update that he had received on either mine or her conditions since leaving me at the theatre doors. I often consider that to be one of the most traumatic moments of that day for either of us; I had the "benefit” of being asleep and unaware.

During the time I was in theatre when Dan was not sure what the outcome would be he had called both sets of grandparents who had both rushed in to the hospital. As per KEMH visitor policy grandparents were allowed to visit Olivia, one at a time, accompanied by Dan.

Dr Wu (my obstetrician) came to see Dan and my mother is with him at the time; they both finally get to hear that I am OK despite losing quite an amount of blood and are also told that another 10 minutes would have resulted in a very different outcome for both Olivia and me.

In the NICU Olivia had two IV lines placed through her umbilical stump and was hooked up to various monitors (to measure heart rate, oxygen saturation, blood pressure and body temperature). Dan stayed with her until approximately 9:00pm when he was told he could come and see me in recovery as I was waking up. I remember drifting in and out whilst waking and asking the nurses there if Olivia was alive and if she had cried. When Dan came in he showed me some photos and told me that the doctors had told him that she was doing well so far.

It took a little while for my blood pressure to be raised and stabilized, but once it was I was transferred back to the ward. Dan and I sat there in shock for some time before he decided to go home and get some sleep quite late that night.

Late the next morning I had my catheter removed and was able to get up for the first time. I was then able to be taken down in a wheelchair to meet Olivia for the first time (as I was under a GA I didn’t even get a glimpse in theatre). When I saw her I instantly started sobbing and telling her I was sorry, over and over. I don't think any amount of shock could have dulled the emotion of that moment, it was intense; Olivia was unimaginably tiny.

One of Olivia’s doctors came over to see me and explained a few things, including that Olivia had an open PDA channel in her heart (common for premature babies) and that ideally this would be closed before any feeds or progression could commence. I do remember asking what I needed to give consent for and what they would just do out of necessity; I felt as her mum I should have been doing something, even if it was just saying 'yes' to all of the medical team looking after her; I felt quite helpless.

Later that day it was discovered Olivia had a pneumothorax (collapsed lung) and she had an ICC drain inserted in her chest to try and resolve this (to remove the air). She was placed back on a warmer bed which was covered with cling film (literally glad wrap) whilst this resolved because the draining mechanism combined with all of the IVs and monitors she was hooked up to meant that she could not be managed in a humidicrib. She was sedated with morphine and not weighed for a few days due to her fragility. This was another set back both to being able to attempt to progress from mechanical ventilation to CPAP and for feeding, we were told.

Olivia with an ICC drain

Dan helping with the cling film

We were very uncertain about Olivia’s prognosis and celebrated her being 24 hours old, then 50 hours; every small milestone seemed like something to cherish as we weren’t sure how long she would be with us for. Although we weren’t necessarily given a prognosis to that effect, she certainly wasn’t doing as well as she could be.

On day four Olivia’s ICC drain was removed, however this only lasts a few hours before it is needed to be reinserted as the lung has again collapsed. As it is now a Monday (Olivia was born on a Friday evening) the main consultant for the fortnight sees us for the first time and discusses that Olivia may need ventilation for quite some time based on the progress with her lungs. In better news, however, he conducts a head scan that is clear for any large bleeds.

On day five after three days of ibuprofen treatment for her PDA, Olivia has a repeat heart scan that shows the PDA is now closed. She also had her ICC drain removed with success and everyone is feeling a little more positive about the situation. Based on this combination of things Olivia had her first 1mL of EBM at 6pm that evening, and tolerated it well.

I was discharged on day six and cried the entire car trip home. It was agonizing to think that I wouldn’t be under the same roof as Olivia and that I was leaving her behind. I called the NICU three times within the first few hours of being home! Those first few weeks I cried often and at so many triggers… seeing a mother with her healthy full term baby, seeing a heavily pregnant woman, seeing Olivia struggle… everything had me in tears, which those close to me will know is not a common occurrence. The trauma of the NICU experience should never be underestimated, even for the most stoic of mothers.

On day seven Olivia is trialed off the mechanical ventilator and on CPAP for the first time, she only lasted a few hours before needing to be re-intubated. It was not entirely unexpected due to the poor start she had with her lungs.

The following day the last of Olivia’s umbilical lines were removed and a ‘long line’ was inserted through her foot to replace these. I couldn’t watch it be performed and we had to take a quick break in the parents’ room whilst the consultant performed the delicate procedure. Afterwards Olivia had another spell under the lights for her jaundice levels, another common occurrence for premature babies.

Days nine and ten saw the first and then second day without any procedures performed on Olivia, it was a break for everyone’s stress levels and we embraced the little bit of calmness that came along with it. On day 11 her weight has increased to 726g and her feeds have increased to 3mL every two hours. Although this was all positive I was still not able to hold Olivia and my emotions were getting the better of me as I felt so hopeless; however these few days would prove to be the calm before the storm!

Olivia’s oxygen requirement started increasing and her desats became more frequent; we were told that she needed a blood transfusion (as she was not able to make her own red blood cells yet) and that that may assist in with her oxygenation. Olivia’s feeds were stopped in preparation of the transfusion, however in conducting some other checks before the transfusion commenced it was discovered that she had an infection. Antibiotics were started immediately and the transfusion is delayed a little, but still went ahead.

A lumbar puncture was performed without any anesthetic (the norm, just a little sugar is given before the procedure) and the long line was removed in suspicion that it may have been a source of infection, which turns out to be the case. Olivia’s tiny 700g body was battling a staph infection. We had been told early in our NICU journey that infection was often a matter of ‘when, not if,’ so whilst somewhat prepared to hear such news, it was still a devastating blow. 

Less than a day after this diagnosis Olivia started having seizures, her oxygen drops dramatically, her colour changes and she makes small repetitive jerking movements. Fear and confusion are added to our devestation and we are once again lost not knowing what to expect.

EEG brain monitoring

On day 15 Olivia was still being treated for infection and still having some seizure activity. She had an EEG performed (a brain scan), and was started on medication whilst a consult was sought from the consultant neurologist at PMH.

My first hold, Day 15

Olivia was still ventilated, but despite all this, I finally was able to hold Olivia for the fist time! It was an emotional turning point for me and I felt empowered and I felt properly like her mother for the first time. I have since given this feedback to Olivia’s neonatologist and commented to anyone who will listen that the first hold is so important for emotional wellbeing.

On day 18 Olivia was finally well enough to have her feeds restarted. The seizure activity was put down to the infection as no other brain abnormality or bleed could be found and they had resolved with the infection. Progress was made in leaps and bounds over the next two days and on day 20 Olivia was finally able to switch from the ventilator to CPAP, and remain on CPAP!

Finally on CPAP and eyes starting to open, Day 21

The following two days Olivia opened her eyes a little for the very first time (they were still fused closed when she was born) and we were also able to hear a tiny little squeak of a cry for the very first time. The last of her IV lines were removed as she was now up to “full feeds” and her oxygen requirement had decreased from 50% down to approximately 35%.

It is only in hindsight that we truly appreciate how sick Olivia was these first three weeks in the NICU and how lucky we are to have such a healthy, thriving two and a half year old today. The team at KEMH are incredible, Olivia is evidence of that fact.

It is the memories of these first few weeks, and my emotional state at the time, which has driven me to want to help other new parents in the same position.

The following 12 (rather less eventful) weeks and Olivia’s eventual homecoming can be read here.

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Adison's NICU Journey - Up Close and Personal

This is part 2 of a 3 part series.  Part 1 can be found here.

After the whirlwind that was my classical section birth at 4am, finally at 8pm that evening I was functioning enough to be wheeled into NICU to properly meet my new son for the first time.  Wow!  That was confronting on so many levels.  The heat from the NICU made me feel physically sick but I was determined to stay as long as possible and see my boy.  To find out what I could about all these tubes wires and machines keeping him alive.  It was noisy, bright and there were SO MANY BABIES!  I think the thing that shocked me most about NICU was the sheer number of tiny babies being supported and kept alive by the amazing staff and technology in the NICU.  After a very short period I couldn't physically stay there any longer, it was time to return to my room.  Adison was ventilated but stable.  They were treating him with prophylactic antibiotics as they felt he may have an infection and he was moving about, flapping his little arms and legs in his incubator.  In spite of all this Doctors had ordered feeds of 1ml of breastmilk per hour as tolerated in a bid to prime his gut.  We had also been approached to participate in two research studies which we consented to.  One was on genetic prediction of preterm birth, the other was on the type of lipids given in the NICU.

Meeting Adison 865g.

The next couple of days were about recovery for me and progress for Adison.  On day 3 the Doctors decided that Adison was breathing well enough to be taken off the ventilator and put on CPAP.  My milk had come in, I was in pain and was an emotional wreck.  My husband and children were staying with my parents.  2 of my kids were sick.  As I shuffled past the nurses station, holding the wall to help me balance and hunched over because the pain was too great, but struggling on because there was no one to wheel me to NICU a nurse popped her head out the window and said, "I think we'll send you home this afternoon."  I burst into tears and continued to walk to the NICU.  I could not contain myself, my thoughts.  How could they possibly discharge me when I can't even walk properly and my baby is in the NICU?  Where will I go?  Home is 2 hours away.  How will I possibly look after my other children when I can't even look after myself?  It was all too much.  When I got to the NICU I couldn't say a word.  I sat quietly and watched my baby and cried.  I returned to my room and was visited by an admin staff member and we had an argument about me staying 1 more night.  In the end I won.  I stayed 1 further night and was discharged the following morning.

As a rural mother I was offered accommodation at Agnes Walsh House.  I had never heard of the facility before, in fact I had never set foot on the hospital grounds until wheeled in by the ambos just days before.  I wasn't sure what the accommodation was like, what it cost, where it even was.  I asked for information, a hand out, anything, nothing came.  All I could find out was that it was for mothers only.

Very sick.

On day 4 I had my stitches removed and was discharged from hospital.  I went home to my parents house in the northern suburbs of Perth.  Adison was initially doing well on CPAP but as the days went on he moved less and less, he was struggling more and more.  On the evening of Day 6 I called the night staff before going to bed to check how he was doing.  This had become part of my routine.  The nurse looking after him said, "I'd be lying if i said he was doing well."

No words can describe the terror you feel when you hear words like that.  Overnight Adison became worse, at that point they didn't know what was wrong but suspected some kind of infection.  He was ventilated again and blood tests and a lumbar puncture revealed he had contracted a very nasty infection, heamophilous influenza which was now ravaging his body.  So we waited, watched and hoped.  Adison was pumped full of antibiotics, received the first of three blood transfusions and was on minimal handling to give his body every chance of recovery.

First cuddle.

Slowly he started to regain some of his strength and his CRP levels came down.  The treatment was working and he was getting better.  Finally on day 18 I had my very first cuddle with my baby boy.  Words can't describe how I felt.  At one point I thought that moment would never come.  I had sat by his bed and quietly whispered to him that it was ok, that if the fight was too great, it was ok for him to go, I would not make him suffer.

After three false starts over the coming week and 2 further lumbar punctures Adison finally made it off the vent and back onto CPAP.  Things were looking up.  He was tolerating his feeds and most importantly he was putting on weight and growing.

On the morning of day 28 I walked into the nursery and was surprised to see a big open cot in Adison's bay.  I immediately assumed Adison must have been moved overnight but thought I would just walk down to his bay to check.  

Adison and his favourite friend 'Blue Dog'.

To my surprise Adison had been taken out of his incubator overnight has he had progressively got hotter over the previous 24 hours and there was nothing to indicate that he had an infection.  They had turned his incubator off and opened all of the portholes and he was still hot.  They were left with no other options than to take him out of the incubator and into an open cot.  He had only just hit 1kg and I was told normally they waited a bit longer than that but Adison wanted out.  He had just moved onto full feeds which he was tolerating well and his TPN had finally been removed.  My baby was IV free for the first time in his short little life.

After 7 weeks of visiting the NICU daily it had become so routine that I had to remind myself that it was an intensive care unit.  My baby was growing but he was still requiring a lot of breathing support to keep him alive.  Without CPAP he was not maintaining his oxygen saturations.  Adison had become the healthiest baby in the NICU and there was rumour that he would be moved out to HDU (High Dependency Unit) that rumour was right and later that week he was moved.  I was so anxious about the unknown, but my fears were allayed, HDU was lovely and the staff just as friendly as the NICU.  Some of them the same faces.

First try on PBF oxygen.

Many more weeks went past and the biggest hurdle we faced was breathing.  Adison really wasn't ready to move off CPAP.  His head was suffering terribly from being squashed by his CPAP hat and it was decided that his head needed a break and he would be tried on PBF oxygen to give his head a rest.  It was decided they would try for 1 hour every other day to begin with and add foam inserts into his hat to protect his head more from the CPAP.  It was at this time that Adison began non-nutritive sucking where I would express off my milk and offer an empty breast for him to nuzzle.  He was so keen but could only manage 3 or 4 sucks before wearing himself out.

First cuddle with Dad.

My husband was yet to cuddle Adison.  He had returned to work in Bunbury so was only visiting on weekends.  Between juggling our 3 other children at the weekend and visiting Adison we'd not been to visit him together at all.  We finally made arrangements and Russell had his first cuddle.  Wow, what a way to get the emotions flowing that was!

Christmas was rapidly approaching and poor Adison seemed stuck.  He was still cycling off CPAP and onto PBF, he'd had a few set backs going back to full-time CPAP.  He'd needed another blood transfusion and was having a few breastfeeds here and there but was wearing himself out too quickly.  It was a waiting game yet again, and then quite quickly he decided to get a wriggle on!

First bath.

He managed to move off CPAP onto PBF and get a proper bath for the first time!  We was sucking more feeds and the door was looking closer and closer.  He moved from his big white cot into a smaller wire basket, passed his newborn hearing screen and continued sucking more feeds.

Heading home, 2.7kg.

But of course there is always a hitch with getting these little ones home.  Adison had an ingroinal hernia and as it was Christmas break there were no surgeons at PMH who could operate and he was not to be discharged without the repair.  So we waited, and waited.  Then he needed an extra eye exam, so we waited for that too.  In the end the Drs made arrangements for 3 babies to have surgery at PMH as they were all ready to go home and just waiting on hernia repairs to get out the door.  A lovely Dr returned from Christmas break early and conducted all of their surgeries.

Finally on January 8, 2 days before his due date and 100 days after he was born we left KEMH NICU in Perth and headed for home back to Australind.  We thought the worst was over, that now we would watch our baby flourish, but things change fast!

Part 3 of Adison's story can be found here

If you would like to share your NICU story with our community please get in touch via our personal experiences page.  Your stories help people through their own journey to know that they are not alone and that in spite of all of the obstacles facing their baby these little ones are true warriors.

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Adison's Birth Story

This is part 1 of a 3 part series.

Early in 2010 my husband Russell, our 3 children and I moved to Australind.  Not long after our move we found out were were expecting baby number 4.  The next few months were smooth sailing pregnancy wise until...

On the morning of September 27 2010 I was lying in bed, awake, feeling baby kicking.  I commented to Russell that baby was kicking a lot and took his hand to feel my tummy.  Right at that moment I felt a warm trickle and jumped out of bed for the toilet.  By the time I sat down my pyjama bottoms were soaked and I said to Russell that I thought my waters had broken.  We were both in disbelief.  I was only 24 weeks pregnant!

I called the hospital and threw a few things in a bag whilst Russell got the kids some breakfast, then I drove myself to hospital.  I'd actually never been to the hospital before and needed a couple of goes to find it.  When I finally arrived I got out of the car and there was a big gush, and at that moment I knew for sure that my waters had really broken.  I think I had been in denial up until that point!  I made my way into the hospital and found the maternity ward.  I spoke with a lovely midwife who was most helpful and got me settled before the Dr arrived.  They both made it clear that I had to be transported to Perth, to King Edward ASAP and they had already put in a call to the Royal Flying Doctor Service to airlift me.  They did not have adequate facilities for a 25 week baby at St John of God Bunbury or Bunbury Regional Hospital and given my 1 hour 15 min labour with my third baby there was some panic that things might progress rapidly.

I managed to phone Russell and through the tears let him know the situation and asked him to call my Mum in the city and make arrangements to head to Perth with the children.  Meanwhile I swallowed meds to stop contractions, was swabbed for Strep B which I had with 2 previous pregnancies, had blood taken and had an injection of steroids to help babies lungs produce surfactant.

A few hours later I was transported via ambulance from the hospital to the airstrip, then flown to Perth and again transported by ambulance from Jandakot airstrip to King Edward.  I was assessed and admitted on arrival, more blood was taken along with another swab and I was advised I was now on strict bedrest.  That night I hardly slept a wink.

The next morning I was taken off for an ultrasound to check on baby and make sure he was OK.  Thankfully he was OK, but the scan showed there was no amniotic fluid left and that baby was a footling breech.  Later than morning the team of Dr's assigned to me attended and advised that as baby was a footling breech I would need to have a cesarean when the time came if he remained in that position.  Further they advised as baby was only 25 weeks it would need to be a classical cesarean as there wouldn't be enough room otherwise.  I signed the consent required and asked what the averages were like for women in my position.  How long did they normally last before the baby was born?  I was told the reality is generally they last not longer than 1 week.  I received another injection of steroids to help babies lungs.

The following day, we are now at Wednesday 29 September Russell and I decided that if we made it to the following Tuesday for another wellness scan on baby we would find out if we were having a boy or a girl.  We also decided that if baby arrived in the meantime we selected the unisex name Adison.  Just as well we had that discussion!!  At 3.45am the following morning I got up to go to the bathroom.  When I got back into bed I felt a very strange sensation, like there was something there that shouldn't be, then it started flapping about!  I pressed the call bell as I was concerned and waited for a midwife.  While I was waiting the flapping got worse and I grew more concerned.  I hit the emergency bell and immediately half a dozen midwives flew into the room.  I explained that I could feel what I thought by this time must be a foot flapping about where it shouldn't be.  They called a 'Code Blue' and whisked me out of my room and down to theatre in the blink of an eye.  When we got to theatre they checked and sure enough there was a little foot prolapsed.

They had just enough time to give me a spinal block which meant I was awake for the operation and Adison was born via classical c-section at 4.04am.  He weighed 865g was 34cm long and a head circumference of 23cm.  I was able to give him a quick kiss on the forehead as he was taken to the NICU for attention.  His Apgar scores were 6 and 8 so he was going ok, but going to need lots of help.  Unfortunately Russell missed his birth and arrived at the hospital as the nurse handed me the phone to tell him our baby was a boy.

Meeting Adison for the very first time.

Meeting Adison for the very first time.

The balance of the day was a complete blur.  When they removed the spinal block I received a loading dose of morphine which had me fuzzy and asleep until 4pm.  At that time I started expressing for my little man and when Russell came back to the hospital that evening I visited the NICU and was able to see him properly for the very first time.

This is only the beginning of our story.

If you would like to share your story with our community please visit our personal experiences page, complete the form and we will be in touch.

You may also like these stories :

Pregnant with Blake

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