** Photo's in the post may be upsetting to some**
Can you imagine a world where you spend in excess of 14
hours a day in a hospital, where you have to watch your child sleep in a crib
that regulates their body temperature while machines help them breathe and
monitor their every heartbeat. Where tubes feed them because you aren’t allowed
to, where you can’t pick them up or hold them, where you can see their tears
falling from their eyes but cannot hear the sound of their cries because they
are intubated. Can you imagine having to leave your child every night, leave
them to be cared for by someone else, a complete stranger to you, while you go
and try to sleep in a room that is not your own, in a city you do not live in
with no family around. And to top it all off, a husband who only wants to talk
to you about the problems you are having in your relationship. There is no
escape, there is no end in sight. You don’t know if your child will be okay or
when you’ll be able to take them home or even if you’ll be able to take them
home, you don’t know what is going to happen with your marriage, you feel like
you don’t know anything. Can you imagine this world? I can. I can because this
was my world. For almost three months this was my life.
Peter* and I had been having problems for a while by the
time Alexander was born and living in a small room together only made things
worse. I couldn’t handle the issues we were having and begged him to just let
it go until we knew everything with Alexander would be okay. He wasn’t able to
do that. Every single day he berated me about where our marriage was going,
what I wanted and what he needed. The few days following the birth of Alexander
were my only respite, he seemed to have let it go. However it only lasted a few
days. I couldn’t believe it, our son was in hospital, fighting for his life and
this was his priority?? It’s standard to see a counsellor when your child is in
NICU, especially if it is expected they will have an extended stay. I loved our
counsellor. Peter and I saw her together and attempted to speak with her about
our problems but the sessions only ever ended in an argument, followed by Peter
telling me off afterwards for saying certain things, or speaking when he wanted
to talk. It was becoming more and more apparent just how controlling he was.
During my pregnancy he would comment on things such as if I had a chocolate bar
or nothing but breakfast cereal for dinner, because that was all I could
stomach. It was subtle at first, almost said jokingly. Then it became more
serious and towards the end he would be quite blunt in putting me down about
what I would eat, what I would do and how I would do it. He controlled what I
talked to people about (if I spoke about my work he hassled me later saying I
was ‘showing off’ or that people didn’t want to hear my stories), he controlled
who I saw and he controlled where I went and when. He had isolated me from my
friends and family. My closest friend was amazing to me and so supportive, I
talked to her about everything and Peter knew this. He started telling me that
I wasn’t able to talk to her anymore or see her. I had let a lot of the other
controlling issues slide, either because they were so subtle I didn’t notice
them or because I didn’t have the energy to argue, but this one I wouldn’t
allow. He started checking my phone to see how many times I had texted her or
called her in a day. He even told me he suspected that after I had Alexander I
was going to leave him for her. He was so time consuming and demanding and I
was exhausted.
Alexander’s first few days of life were a blur. I remember
sitting in the waiting room when he was having his first surgery, silently
crying the whole time. I had been awake for 36 hours straight after going into
labour at 9pm the night before. The nurses looking after Alexander were
amazing, they would send me back to my room to rest when they thought I’d had
enough, they made sure I had water with me all the time and sometimes they just
sat with me and talked about Alexander and the strong personality he already
had. I stayed in hospital for 3 days after Alexander’s birth, not because
anything was wrong but literally because the nurses looking after me on the maternity
ward forgot I was there. On the second day I was in my room resting while
Alexander slept 4 floors below me in the NICU. A nurse came in after knocking
on the door, she walked in and apologised for waking me. After a few seconds of
looking around the room puzzled she said to me ‘where is your baby? You’re
supposed to have him with you all the time.’ I burst into tears. Didn’t they
have that information on my chart or something to stop hurtful questions like
this? What I wouldn’t give to have him by my side at every moment. I told her
quite bluntly he was in NICU. I gathered my things and walked out of the room
without speaking another word to her. I never saw that nurse again.
Cuddles with Alexander in NICU1 - Day 5
I was sitting with Alexander late at night, watching the
monitors, watching the machines helping him breathe. It may seem weird to some
but I found the beeps of the monitor to be soothing, they were familiar to me,
I understood them. They told me information I could interpret, the beeps
reminded me of work, our machines sounded exactly the same. I could feel my
eyes getting heavy as I sat in the chair next to Alexander’s bed. All of a
sudden I heard the alarm tone – it was telling me Alexander wasn’t getting
enough oxygen. He was intubated, the machine was supposed to be regulating
this. I sat straight up as his nurse rushed over. I could see his lips starting
to go blue as the machine’s alarms continued to sound. It was my instinct both
as a mum and as a paramedic to do something, but I didn’t know what. Another
nurse came to help and another took me by the hand and stood me back from the
bed. Alexander was now a dusty pink all over, going purple. I could tell by the
monitors he wasn’t getting any oxygen and his heart rate was dropping, it was
slowing down. The nurse was suctioning Alexander’s tube, there must have been
an obstruction. He had been producing a lot of mucous and this was causing a
blockage in the tube. My whole world had stood still. His heart was getting
slower and I knew the nurse holding my hand was concerned. His nurse was still
suctioning the tube, the machine was beeping way too slow, I had tears
streaming from my eyes and I was shaking. It was almost like my heart was
trying to compensate for Alexander’s by beating that much faster. Then I heard
the beeps speed up. The nurse had reattached the ventilator and Alexander was
returning to a much healthier shade of pink. I will never forget those moments,
watching helplessly as these amazing nurses worked quickly and calmly to keep
my son alive.
Alexander Day 2 - Intubated and sleeping
The step down from NICU 1 (most critical babies) to NICU 2
(still very sick but not as critical, usually for babies that can breathe on
their own) was a massive relief. The atmosphere in the pod room (the room which
held up to 6 NICU beds) was much more relaxed. These babies were still
critically ill but for the large portion they were travelling along well. One
day I started talking to another mum who was in the room, Alysha. Her son Oscar
was in the NICU after being born at 24 weeks. Alysha was amazing, I had seen
her for a few days walking through the NICU, she always seemed so composed and
in charge. Her little boy was a few weeks old at this stage. After having a
chat with Alysha I realised she was even more amazing than I had thought. Oscar
was her second child, her little girl Ruby was also born at 24 weeks and had
spent 100 days in NICU. This was her second stint here. She spoke the NICU
language fluently and knew more about CPAP and surfactant than most nurses
would. We quickly became friends. I had someone to talk to, someone who
brightened my day and someone I looked forward to seeing. I don’t think she
will ever know just how much of an impact she had on me or just how much I
relied on her friendship during this time. Peter didn’t like us being friends
and would often make negative comments about her in order to try and stop me
talking to her. It wasn’t going to work.
After two weeks of Alexander being in NICU, the hospital
felt like a second home. I knew the walk from Ronald McDonald House to the
hospital step by step and I knew the smell and sound of each corridor and lift
through the hospital. The nurses started knowing me by name and I had settled
into the hospital’s routine. My days were the same, day in and day out. Each
day I would wake at 6am and pump breastmilk to store for Alexander. I would get
ready, stop by the coffee shop on the way and be at the hospital by 7am. Each
morning they had rounds where the doctors, nurses, pharmacists and anyone else
involved in the baby’s progress and development would come around and talk
about what had happened in the last 24 hours and what the plan for the next 24
hours was. After this was done I would sit with Alexander and read him stories,
I would pump every 3-4 hours in order to maintain my supply, I didn’t have the
luxury of feeding on demand. I would stay at the hospital until around 1pm,
then I would head out and have lunch and go back to Ronald McDonald House for a
nap. I would gather more supplies and
usually a prepacked meal for dinner, one that I had cooked in advance and
frozen. I’d then head back to the hospital at 4pm and stay until around 10pm at
night. I’d walk back to Ronald McDonald House, get myself organised for the
next day, shower, pump again and go to bed. I’d wake during the night at around
2am to pump again, attempting to mimic the needs of a newborn. This was my
routine. My day to day. This was my life.
The third week of NICU was a little scary. The cause of
Alexander’s bowel obstruction was unknown.
The surgeons were unable to determine the cause during surgery and
therefore further testing needed to be done. I was told that they were
suspecting one of two conditions. The first was a condition called
Hirschprung’s Disease. This would have
meant that at the point of the obstruction the nerves in Alexander’s intestines
were not formed properly, and everything below that section would not work.
Because of how high in Alexander’s intestine the obstruction was, this would have
meant that Alexander would have had a very low quality of life and this
condition would have ultimately been fatal. Alexander wouldn’t have been able
to eat, ever. I couldn’t believe this was possible of my gorgeous little boy.
The other option was that Alexander would have Cystic Fibrosis, a condition
primarily affecting his lungs. This would have meant Alexander would have to
endure daily physiotherapy and medication, he would be completely infertile and
his life expectancy wouldn’t reach past forty years. Alexander had a 90% chance
of having Cystic Fibrosis. At week 3 they were able to text for Hirschprung’s
Disease but couldn’t test for Cystic Fibrosis until 4 weeks at the earliest.
The test for Hirschprung’s was invasive and I stood with Alexander, soothing
him as they took the sample they needed. The results wouldn’t be ready for
days. These were the slowest days of my life. I floated through in a haze, too
scared to think about things too much. The results came back and they were
negative for Hirschprung’s Disease. I felt so relieved, but it was short lived.
The surgeon who gave me the news followed the information with ‘I guess it is
Cystic Fibrosis then’. My heart sank. I still couldn’t believe it. And I still
had to wait.
Alexander's 'Bedroom' in NICU2
I had been having regular appointments with the counsellor,
just on my own as the ones I had with Peter always ended up in more arguments.
I had updated her on Alexander’s condition but I had said to her that I didn’t
want to talk about the possibility of him having Cystic Fibrosis. If he did
have it, I would deal with it then and if he didn’t have it then I didn’t want
to stress about it now for no reason. She was accepting of this. The
conversation turned to my marriage and she asked me if I was happy. My response
was simple, I don’t think I had ever been happy, not really. She asked what
support I had, I explained that I had two friends that I had talked to that
Peter didn’t know about because it would have caused more problems. One was my
closest friend who Peter had forbidden me from talking to, and the other was
Steve. I had kept him up to date on Alexander’s progress as much as possible.
He was so supportive and diplomatic when it came to Peter. His response to most
things was that he was probably just finding it hard being a new dad and not
knowing how to express it. My family was a source of support but I had kept
from them how bad things were in my relationship with Peter that it almost
seemed impossible to talk to them about it now. My mum knew things weren’t
fantastic and she was trying her best to help. Mum spent as much time as she
could at the hospital with me but she lived 3 hours away and getting to
Brisbane was difficult for her. I knew she wanted to be closer to me, I needed
her to be closer to me, but Peter wouldn’t allow it. He came across as being
supportive of me in front of others but behind closed doors he would always
comment on how it would be unfair if my mum stayed with me and he couldn’t have
his mum that close or that I shouldn’t be relying on my mum so much and that I
should be relying on him. In the end I gave up the argument. My counsellor asked me, ‘Do you want to be
married to Peter’. I thought about it… I honestly didn’t know. I knew I didn’t
love him anymore, not really. But I felt guilty at the thought of not having
this ‘perfect family’. She asked me to picture myself sitting on a beach, I was
smiling, laughing and I was happy. She asked me who was there with me. I said
Alexander. Just Alexander. She asked what I wanted from my marriage and I
responded ‘I want out. I want it to be over’. It was all too much to process
while my son lay in NICU and I was so far from home. I told her I was just
going to get through however long it took to get home and then deal with it
then. I didn’t want to discuss things with Peter, I just wanted to take each
day as it came. As far as I was concerned we just needed to be roommates, there
for support for our sick son, we just needed to get through.
The day of the Cystic Fibrosis test finally came. They had
to collect a certain amount of sweat from Alexander’s skin and test the amount of
chloride found it in. Those with Cystic Fibrosis have higher chloride levels,
in a nutshell, their skin is saltier. The nurse that was looking after
Alexander that day was brilliant. She had known I was getting very nervous
about the test and sat with me for a while. She had been a NICU nurse for 15
years and had seen it all. She said to me ‘he just doesn’t look like a CF baby
you know’. I had these little glimmers of hope but then would doubt myself – he
had a 90% chance of CF and then there was what the surgeon had said… I was
torn. ‘Have you licked him?’ she asked. Huh?!? Licked him? She explained that
people with CF have very salty skin and you can taste it. I looked at her and
she laughed – she said she was serious and that it was true. I have to admit –
I was desperate for hope, for any sign that he didn’t have CF. So I did it. I
licked my son’s forehead. He didn’t taste too salty. Maybe a little. But how
salty is too salty? Then I burst out laughing. The nurse asked what was wrong.
I had just realised Alexander had never had a bath. In the tiny entirety of his
life, he had never had a bath. He had been wiped down occasionally but water
and submersion posed a massive risk of infection of his PICC line and IV lines.
The nurse had made me laugh for the first time in longer than I cared to
remember. I had an overwhelming feeling that everything was going to be okay. The
test was done and a few days later the results were back. The nurse who was
there on the day of the test came to visit – I explained the results were back
but the doctor had been busy and wasn’t able to come around to tell us until
later that evening. She said to me ‘well that just won’t do, come with me’. She
took me over to the computer and logged in to see Alexander’s results. There it
was, right before my eyes. All the numbers on the screen took me a few seconds
to process. He was clear. He didn’t have CF. It wasn’t even marginal, his
numbers were convincingly below CF levels. I jumped for joy, hugged the nurse
and cried tears of happiness.
More cuddles - I couldn't get enough
Now I just had a waiting game. It was determined that
Alexander’s obstruction was just a congenital defect with no apparent cause. I
was waiting for Alexander to be able to have his next surgery where they would
reconnect his intestine – they had to wait until the swelling had gone down so
each side of the intestine was closer in size (initially one size was 1cm in
diameter and the other was 4cm, they explained it would be like trying to
connect a small garden hose to a drain pipe). During this time Alexander was
healthy, he was now able to have 3mls of milk every hour and was gaining weight
from the TPN and lipids (IV food). Things were looking good and he was a happy
little man.
Unfortunately things were just getting worse between Peter
and I. I felt so trapped and so alone, I was fighting to get through each day
and doing my best to avoid Peter. I had even gone home on a few occasions just
to get away. Alexander was doing so well and I knew I wasn’t doing well staying
there. I would go and spend the morning with Alexander, reading him stories and
going through our usual morning routine. By this stage I had read 7 Roald Dahl
books and we kept working our way through the collection. At 1pm I left the hospital
and left town, heading home. It only took around an hour and a half to get
there. I was so excited to be alone. I spent the night in my own house. I didn’t
sleep in my bed, I was trying to distance myself from Peter as much as I could
and that bed was our bed. I slept on the lounge and had the best night sleep
since before Alexander was born. I called the hospital every few hours and
spoke with Alexander’s nurse, they knew I had gone home for the night, in fact
one of his nurses was the one to suggest it. At first I thought I could never
do it. After telling the counsellor what the nurse had suggested she made me
see it was a good idea. She had also told me that Peter had made an appointment
with her and while she couldn’t discuss with me the specifics of their
discussion she felt she needed to warn me of a few things. He had confronted
her, trying to get her to say that I had post-partum depression. My counsellor
and I had discussed this and she was adamant that I didn’t have PPD. She said
Peter was trying to use it as an excuse as to why our relationship was failing.
She also said she was very concerned for me as it was becoming clearer to her
just how controlling Peter was getting, he had requested she advise him of
every counselling session I had with her and had tried to find out what we had
been discussing. She was highly concerned and knew I needed a break away. After
she had told me this I too realised that a break was exactly what I needed, for
myself and my ability to stay strong for Alexander.
I returned before lunch the next day, I had missed rounds
that morning but had spoken to Alexander’s nurse straight after and she kept me
up to date. When I arrived back at the hospital Alexander’s nurse had said that
there was talk about possibly having Alexander’s next surgery soon. All of a
sudden I became nervous and excited all at once. This meant things were moving
forward but I felt guilty for being excited about my son having surgery and I
was so nervous about the complications that can happen with it. Alexander’s
surgical team came around a little later and assessed him and spoke with me.
They said that they were happy with the way things were progressing and at this
stage they were scheduling his surgery for one week’s time. They were confident
that they would be able to re-join his intestine with limited issues. There it
was – that beautiful bright beam, this was the first time I had seen some light
at the end of a very long, very dark tunnel. I knew I had a block of time to
get through. A week. A week seemed easy in comparison to what I had been
through. I should have known though, nothing in NICU is easy.
Looking down at this perfect little man made very second worth it.
…
Thank you for your patience as I tell The Story of
Alexander. I was not prepared for the height of emotion I would feel as I
retold his story, I find myself wanting to tell every detail and there are so
many. So this is Part 2 and like this one, Part 3 will come in time. I cannot
thank you enough for your response to his story so far, your love and support
has been amazing. I hope you continue to enjoy his story as much as I am
enjoying writing it.
*Name changed for privacy.
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