I could use this page to tell you all of the facts about
TinyLife but instead I am choosing to tell you something personal; the feelings
behind the facts; our own experience of the exceptional work that TinyLife does
and the story behind why we hold this amazing charity so close to our hearts.

This is Isaac's story - from Bump to Beyond!

From the beginning we knew this wasn't going to be a
textbook pregnancy. Actually it was quite the opposite. I became a running joke
with my family that I just opened a medical journal on pregnancy complications
and said I'll have this one, that one, the other one, etc. We knew quite early
on that, due to these health problems, I wouldn't be allowed to reach 40
weeks/full term. Unfortunately by 32 weeks my body could no longer cope with
being pregnant and both mine and Isaac's lives were in jeopardy. So on 9th
November decision was made to deliver our precious baby by emergency caesarean.

The reality of the situation didn't actually sink in until
after Isaac was born and transferred straight to NICU. Up until that point we
had still assumed that everything would be like the books tell you. Baby is
born and placed on your chest, you smell that sweet newborn smell that you've
longed for, you see whether it's a boy or girl, they tell you the weight, Daddy
gets a cuddle and all your visitors come to welcome this new bundle of joy into
the world. How wrong could we have been?

There was no skin to skin, no big reveal of our baby's
weight. All we knew was that we had a son and that, according to the doctors,
his head of hair was astounding. We waited 3 long hours in recovery before we
were finally wheeled to meet our precious boy. And there began our NICU
journey.

Being in the NICU is like being in a foreign country and not
being familiar with the culture or speaking the language. At first you just nod
at what people are saying, despite not truly understanding what they mean, out
of fear of seeming inadequate. There's so many acronyms and strange terminology
how will we ever know what's being done to our child? Thankfully the nurses are
patient and willing to teach you a crash course in speaking NICU. With time you
gain a little more knowledge and hands on experience. With each passing day your
confidence grows and before you know it you too are using all of the medical
jargon; you are becoming your baby's greatest advocate and the NICU is becoming
home. The smell of hand sanitiser, the soft humming of the incubators, the
dimly lit lights, the monitors beeping and alarms sounding. Each of these
things will remain etched into our very souls for all eternity. As soon as you
enter the NICU you are brought to the hand washing station. You never truly
understand the importance of hand washing until someone's life depends on it
and in the case of these babies it really is the difference between life and
death. Once we were satisfyingly germ free we navigated our way through the sea
of isolettes to find our little treasure.

In my head I pictured him lying in a warm cot with a light
above him, dressed in a vest sleeping peacefully but nothing could've prepared
me for what we were about to see. That gorgeous hair we'd heard so much about
was hidden under a hat holding a large tube in place; all we could see of his
face were two pouty lips; there were wires, tubes and lines everywhere and his
nose was covered with a machine to help him breath which we soon learnt was
called CPAP. The nurse was talking but I couldn't hear anything except my heart
racing. When finally I heard "Have you any questions?" How do you
even begin to ask "What is this machine?", "When can we hold our
baby?", "How long until he can come home?" when all you really
want to know is "will our baby live?” So we said our goodbyes until the morning.

The thoughts of being on a ward filled with new mums tending
to their babies terrified me. Thankfully when we got there I had a side room to
myself. There is something so surreal and unnatural about being separated from
your newborn baby. Every cell in your body is that of a mother now yet someone
else is doing all the caring and nurturing for your child. That first night as
a new parent was a sleepless one, and not for the reasons you'd expect. Instead
of filling the night with feeding, changing and gazing upon this perfect little
being, you look upon your empty room, place your hands upon your empty tummy
and weep until finally exhaustion takes over.

When your baby is in the NICU it can feel like you aren't
actually their parents. You worry that your baby will forget you. How can he
know I am his Mummy when I haven't even touched him yet let alone done anything
else to care for him?

Isaac was over 24 hours old when I was finally able to hold
him and he was 6 days old by the time his Daddy got a hold. To say it was
terrifying is an understatement. A baby whose arm was the size of an index
finger, with wires and lines connected to every limb, electrodes all over his
body, feeding and breathing tubes attached to his face is not the easiest thing
to juggle. But when the nurse finally got him snuggled inside my t-shirt and I
felt his chest rise and fall with mine everything else faded away. There was
just me and my baby, no equipment, no monitors, no alarms, no NICU, just a new
mummy having a cuddle with her new cub.

As the days went by our love for this little miracle grew in
a way we could never imagine. His determination to live astounded us. Don't get
me wrong things could change very quickly and there were days that were filled
with setbacks but this little warrior would overcome every obstacle. During the
setbacks it was hard to see the wood for the trees when you see how hard your
baby has to work just to survive. You weren't allowed to touch him in case you
overstimulated him as that would have a detrimental effect on his heart rate
and respiratory rate. You felt useless. You longed to be able to share the load
and do some of the work for him but all you could do was sit and watch. It was
in these times that I was grateful the walls couldn't talk. I would pour my
heart out to Isaac through the plastic portholes of his little house. I would
tell him all about our family. I would sing to him. I would share my fears with
him, my hopes and dreams for him. Most of all I would tell him how proud he
made us and how loved he was.

When Isaac was 3 days old he was transferred from the NICU
in Royal Jubilee Maternity Hospital to Antrim Neonatal Unit. As I was still an
inpatient his Daddy had to meet the transport team and stay with him as he got
settled. There are no words to describe how it feels knowing that your baby is
in a different hospital than you; it had been hard enough being in a different
ward two floors away from him. I wasn't able to see him before the transfer so
I made the decision, against medical advice, to discharge myself. Thankfully
the consultant understood. He made appropriate adjustments to my medications,
arranged to see me as an outpatient and gave me information to carry with me
for if I became unwell. Finally I was free to be with my little fighter again. Isaac
was kept in the isolation room in NICU for 3 days when we got to Antrim. We
don’t know whether it was the fact that the only machines beeping would be his,
the cries to be heard were his own but for some reason he thrived in that little
room and somewhere deep within those four walls we found a glimmer of hope.

By the time Isaac was 8 days old, to the astonishment of the
doctors,  he was breathing on his own.
Just in time to celebrate World Prematurity Day (17^th November). The
Neonatal Unit marked the occasion with a balloon release. This day also marked
our first encounter with TinyLife. As I was sitting watching Isaac while he
slept I was approached by a woman whose smile was as bright as her
TinyLife t-shirt. She sat down and chatted to me about normal life, something
that hadn’t happened in what felt like years. She then explained about
TinyLife, who they are and how they help. Things like the lending of a breast
pump if you wanted to express, emotional support to help you through one of the
most stressful times of your life, resources and publications to educate
parents and professional and the support doesn’t stop when your NICU journey
ends. TinyLife offers home-based support if you feel you would benefit from the
extra help. They run Parent Support Groups so you can meet people who can
relate to you and your experiences. Even classes such as Baby Massage are
offered. She took the time to find out about our story; she even asked me how I
was. A simple question yet one that meant so much at that moment in time when I
was at my most vulnerable. I remember giving her our contact details but never
expecting to need them. If I can just get my wee man home then that will be the
hard part over and we can do the rest ourselves, or so I thought.

After three weeks our boy was finally coming home. We had
one night of “rooming in” to ease us into parenthood before we could leave as a
family of three. However, even though you leave the NICU, it never really
leaves you. A cloud of anxiety overshadows what should be a joyous time. Every
day you live in fear of setbacks. You doubt your ability to care for your baby
and keep him safe without monitors, probes and nurses to tell you he’s fine. Our
abilities were put to the test when Isaac was four months old. He became ill
with bronchiolitis and his condition deteriorated very rapidly. He was admitted
to hospital and struggled for three days on High Flow Oxygen until his lung
collapsed. He had to be intubated, put on a ventilator and transferred to PICU.
We were once again faced with uncertainty and our little boy’s life hung on the
balance.

We will never know where Isaac drew his strength from but
what we’ve learned about this little boy is if he wants to do something he will
do it regardless of the obstacles in his way. What should have been a hospital
stay lasting a few weeks turned out to be just ten days (I say ‘just’ very
lightly). It was as if Isaac woke up one day and said “today’s the day I’m
going home, look I’m all better now”. We can learn a lot from him.

One thing we did learn is to have faith in your own
abilities as a parent and that it’s ok to reach out and ask for help. And
that’s exactly what we did. We reached out to TinyLife who welcomed us with
open arms. Our wish is that we can raise some money for them in return for all
of the help they have offered to us and many more families across Northern
Ireland so that they can help someone else in their journey through NICU and
beyond.