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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