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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"Code Blue" Olivia's Birth Story

On Boxing Day 2011, less than four months after our wedding, my husband and I discovered we were expecting our first child. We were very fortunate to have fallen pregnant during our first month of trying.

Michelle and Daniel excited to be expecting

The pregnancy was relatively smooth sailing; I had very little morning sickness, kept active, and aside from tailbone pain developing from approximately 21 weeks I had no other complaints and no complications.

In mid-May at 24+5 weeks, not long after arriving home from shopping for some final nursery items (organised well ahead of schedule), I started feeling some cramps and felt quite sore. Regardless of whether I was sitting down, lying down, using heat packs, or in a warm shower, the cramps kept coming with pain radiating down my legs and around to my back. I started to suspect these weren’t Braxton Hicks, but as a first time mum-to-be I wasn’t sure. I checked for my symptoms in one of my pregnancy books, which confirmed that I was right to worry.

I called SJOG Murdoch (where we were booked to have baby) and the midwife said it was probably nothing (she suggested ligament pain or Braxton Hicks), but to come in anyway for some reassurance, and so we went straight there.

Michelle 24 weeks pregnant

When we arrived at SJOG Murdoch a midwife took me to a delivery suite, because it was the easiest place to do a few checks. My obstetrician was on holidays at the time, but his practice partner had just arrived at the hospital to deliver a baby, and so popped in to see me after the midwife who examined me initially suspected I was having contractions. The obstetrician took only a couple of minutes before telling us that I was definitely having frequent contractions, that we needed to be transferred to KEMH right now, that there were going to give me a steroid to help my baby’s lungs should she arrive early, and administered some nifedipine to try and stop the contracting. We were told that even if everything calmed down we would most likely be at KEMH for 1-2 nights for observation and the second dose of the steroid, so we went home (which was only 5 minutes away) and picked up the hospital bag (yes, 3.5 months ahead of time I already had one packed) and headed to KEMH ourselves rather than waiting at the hospital for an ambulance. In retrospect, this was a sure sign that were completely oblivious to the potential seriousness of it all, and still in shock from what we had just been told.

It was a very surreal car trip and even more surreal when we arrived at KEMH. We initially went to their emergency department only to be told to head up to the labour and delivery ward; that was all a little bit too real! At the labour and delivery ward we filled out some paperwork and waited briefly, then they conducted a fetal fibronectin test (which can predict immanency of arrival in some cases). The test came back negative and the midwife suggested that this was a positive sign. I had some more nifedipine administered and some panadine forte; after some hours the contractions started easing and I was transferred to a ward late evening. My husband left to go home and sleep and I settled in for my first night in hospital.

The contractions stopped overnight, I called my husband the next morning to discuss what he was going to do for the day and when he was going to come in, but whilst on the phone to him I could feel some bleeding start and what felt like a clot passing. I told him that he had better get in ASAP and hung up to call the bell for the midwives’ attention.

I had elected to be a private patient the previous night when we were being admitted and we were offered a few different consultants (as my obstetrician was on holidays). I knew nothing about the system or that the specialists seeing the public patients were amazing, but after discussing it with the midwife we chose Dr Wu, a decision I will forever be grateful for!

Dr Wu came in as soon as the ward called him that next morning and he sent me for a detailed ultrasound. The scan showed I had a large clot (approximately 8cm) behind the placenta. They also took baby’s measurements and told us that she was about 690g +/- 70g, a little on the small side for her gestation. Dr Wu said I would need to stay in on bed rest, in hospital, for at least a week, and have another scan at the end of the week to check baby’s progress and to see if there was any change to the clot. It could grow, stay the same or hopefully, be reabsorbed. There is no explanation as to why the clot may have occurred.

The week of hospital bed rest was rather uneventful and aside from the slight twinge which most pregnant women get anyway, there was no more bleeding or contractions for the next few days. Baby and I were monitored frequently and there was nothing to suggest catastrophe at that stage.

During the week a neonatologist comes by my room and explains to my husband and I what would happen if baby arrived then (being 25+0 weeks at the time he saw us), or at 26 weeks etc. He explains that baby would have had only a 50% chance of survival if born at 24 weeks, and slightly higher if born at 25 weeks. He also confirms that baby’s estimated size is on the smaller end of the ‘normal’ scale for my gestation. We both think “well that was very informative, but that’s not going to happen to us”. We are both still clinging to hope that reabsorption of the clot will happen and that no further contractions during the week has been a good sign.

On the Friday evening nearing the end of my week of bed rest, my husband decided to pick up some pizzas after work, as I was quite tired of the hospital food. I shower, wash my hair and actually apply makeup for nearly the first time in the week and eagerly await his arrival! However by 5:30pm I start having some bad cramping and tightenings that are coming very quickly. I wait approximately ten minutes before deciding to press the call button as I was hoping they would pass, but they are not going away. It takes a few minutes for a midwife to get to the room, but as soon as she walked in I could feel myself starting to bleed heavily. She immediately called the obstetrician, Dr Wu. Over the phone Dr Wu instructed the midwives to hook me and baby up to monitoring, and says he will be in as soon as he can. Baby’s heart rate looks OK, but the bleeding and contracting is becoming worse.

A little after 6pm my husband arrived and I told him to eat his pizza, because there’s not much he can do!! We were extremely worried though as the pain was very intense. Dr Wu arrived at approximately 6:30pm; he quickly assessed the situation and said that I would need to go down to the labour and delivery ward for closer monitoring, but that he would put an IV in my hand in my room whilst the midwives sort out taking me down there. He popped in and out of the room over the next 5 minutes getting bits and pieces but finished inserting the IV relatively quickly. The pain is extremely intense and has progressed from being able to be distinguished in to separate contractions to one constant contraction. The bleeding was heavy but my ability to pay much attention to it was being impacted by the intense pain.

Dr Wu then went out to find a portable ultrasound machine to use as we were still waiting on the OK to proceed down to labour and delivery (although only about 15 minutes has elapsed, not a great length of time), whilst he was out of the room one of the midwives asked the other to help her with the monitor reading baby’s heart rate. They tried moving it a couple of times and then one of them went to find Dr. Wu after the younger of the two asked the other 'what do we do now?' No one tells us explicitly what is happening, but we knew it couldn’t be good. Dr Wu came back in and explained that baby’s heart rate had weakened, and then excused himself again to check on when we could be transferred to labour and delivery. He is gone only a minute, and while he is out the bleeding intensified very significantly, I could feel it, but I couldn’t see what was going on. The pain is still extremely intense and constant.  The midwives were becoming noticeably worried and press the emergency call button. Dr Wu and some more midwives come back in to the room; Dr Wu immediately asked a midwife to call a code blue. “Code blue medical and paediatric, caesarean, ward 5” was called over the PA system to the entire hospital. I would later find out I was having a complete placental abruption.

What seemed like the whole ward’s worth of staff rushed into the room. There was no time to get a trolley for theatre, they took the whole bed and we are out of the room within 60 seconds after disconnecting me from everything that I had been hooked up to. Someone ran ahead to the lifts to insert the key so that they could stop a lift and have it run express from ward 5 to the theatre floor. My husband runs beside the bed and he tells me he loves me, I tell him I love him too and I started crying. I could see the lights rushing by overhead and the terrified look on a man's face as he moved out of the way. I felt like I'd been transported in to some scene from a movie. The lift stopped at the theatre floor and we were met by more staff that ran me through a set of doors into a theatre, they do not pause to have us say goodbye or tell my husband he can’t go in. One midwife stays behind with him to explain it once I am in.

Olivia at birth

Once inside I was transferred to the operating table, they tilted it slightly and I could hear what could have only been blood falling to the floor. A midwife sat up near my head and started asking me my name, when I last ate, and if I was allergic to anything; they wrote all this on a whiteboard. I could see Dr Wu out of the corner of my eye getting gowned up. I had a sheet placed over me and some liquid rubbed over my stomach, a catheter inserted and it seemed it was all systems go. The only person who is not yet there is the anaesthetist, (although it has only been a minute or two) and the midwife sitting at my head turned to me and said ‘they won’t start until you are asleep’. The anaesthetist rushed in, checked the board, and then told me ‘this will hurt, and you will feel like you’re choking’. It hurts more than all the pain endured up to that point and the last thing I remember is feeling like I was choking. I was administered a ‘rapid sequence induction’ general anaesthetic through my IV line, used when there is insufficient time for other anaesthetics, and I was not awake to see Olivia’s birth.

At 7:04pm, Olivia is born weighing 635g and measuring 32cm long, with an APGAR score of 5 and requiring immediate intubation to stay alive.

Read Part II - Her Battle Begins - Olivia's Story (The first three weeks of NICU)

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The Challenges Continue for Adison

This is part 3 of a 4 part series.  You can read part 1 here and part 2 here.

Bringing Adison home to our family was amazing.  His entire NICU stay he was unable to meet his siblings as the NICU has a strict parents only visitation policy.  The children were overjoyed at meeting their new brother but also cautious knowing just how fragile he was and how close he'd come to never coming home at all.

Around 6 weeks after coming home i became concerned for Adison's health.  He was lethargic, not nursing well, irritable and having grey spells when travelling in the car.  Both the local ER and his followup NICU paediatrician brushed off my concerns but i knew something wasn't right.  At our routine cardiology appointment it was revealed that Adison was in the preliminary stages of heart failure.  He had left the NICU with a patent ductus arteriosis (PDA) which had now caused pulmonary hypertension, meaning that the blood rushing to his lungs was at too high pressures thus putting his heart under extra pressure.

The cardiologist was confident that the pressures could be controlled with medication so that was organised and we were sent on our way.  The plan was for a catheter procedure to plug the PDA when Adison was around 1 year old or 10kg whichever came first.  Just 3 days later, after 5 doses of medication we landed ourselves in the local hospital ER.  Adison had rapidly deteriorated and had had an unprecedented reaction to the medication where the pressures drop too low, it was a scary time.  We were immediately transferred to PMH and the Doctors kept us waiting a couple more days whilst they worked out a plan of attack and made sure PICU beds were available.

Post op in PICU.  I had a mild irrational panic when i saw him, my baby, on a big bed, with no side rails.  He was heavily sedated and not going anywhere!

Post op in PICU.  I had a mild irrational panic when i saw him, my baby, on a big bed, with no side rails.  He was heavily sedated and not going anywhere!

Yet again we were at life and death cross roads.  I was taken to the surgeons office to consent to a thoracotomy and PDA ligation.  They would make an incision on Adison's back under his shoulder blade, enter between the ribs and manually tie off the offending artery which runs between the heart and lungs.  The surgeon made it clear that without the surgery Adison's heart would ultimately fail and he would pass away.  With the surgery there was a very real risk that the main artery to the heart may tear as they went to tie off the PDA which would cause him to bleed out on the table.  I had to trust in the steady hands of the surgeon and the strength of my son and sign the consent.  There was no other real option.  Russell and our other children were home in Australind and again I was faced with this confronting situation alone.

Whilst 6 months had passed since Adison's birth he was still a tiny 4.5kg.  Hours past and finally I was told that everything was successful and Adison would be spending quite some time in PICU ventilated and sedated until they were sure that everything would be ok.  10 days later we were discharged.  Adison was doing much better but this had been a significant setback that would take him many months to overcome.  Adison came home on a hospital apnoea monitor and nocturnal oxygen.  Damage had been caused to his lungs and he required additional support whilst sleeping.  He was also having regular apnoeas and no one was quite sure why.  Sleep studies later revealed the apnoeas were caused by his premature central nervous system.

Home oxygen.

Home oxygen.

I can sit!  1 year old and still tiny in size 000 clothes.

I can sit!  1 year old and still tiny in size 000 clothes.

3 years on and we have had numerous admissions to hospital for pneumonia requiring oxygen for many days, sleep studies, MRI, 2 sets of grommets and his adenoids removed.

Adison's gross motor skills were very delayed, he rolled at 9m, sat at 13m, and didn't walk until 22m.  He was on home oxygen until he was 18m at which time he could finally maintain stable levels of oxygen whilst sleeping.  Adison continues to suffer from chronic lung disease and is very susceptible to cold and flu bugs.  The challenges don't stop there, we attend speech, occupational therapy, physiotherapy and numerous specialist follow up appointments to help Adison become the best person that he can be.

In spite of the labels that follow Adison around the medical world, chronic lung disease, cerebral palsy, hypotonia, verbal & oral dyspraxia, dysarthria, sensory processing disorder, he is an amazing, bright, confident little boy who's catching up, every moment of every day.

Look at me now!  Just one of the gang.

Look at me now!  Just one of the gang.

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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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