by Nicky Van
Renterghem, Lochristi (Belgium)
He was born on 14 Ooctober 2015, a day we looked forward to for a long time. Everything was well
prepared. The delivery was planned on that day because of toxemia in my pregnancy.
“We take no risks,” said the gynaecologist, “especially because of your age
(40).”
After a very
easy delivery, a tiny, fragile baby came to our world. He almost didn’t move,
compared with what I felt before in my belly. In my hospital room the nurse
tried to start breastfeeding but Aloïs didn’t have any idea of what he had to
do. “He still needs to recover from the delivery,” we thought. Later on,
because he couldn’t drink at all, they decided to give him a gastro tube so
that he could have the necessary nourishment. Because his temperature was far
too low, they put him in an incubator.
Away dream, away baby, bye bye
breastfeeding!
I started to pump milk so that they could give him the best
food. Nobody knew what
was going on. The paediatrician searched every day as to why Aloïs couldn’t drink independently.
Five days later our sweet little boy got transferred to the neonate
intensive care unit of the university hospital in Gent; a very specialised
unit! I arrived there, barely recovered from the delivery, in a unit where there are
3 wards with about 10 babies in each. Next to each incubator stood one chair. You
didn’t need to expect any privacy!
Thousands of questions and a lot of worries
haunted through our heads!
There I stood,
crying, close to my son in his incubator, not knowing what was wrong with him,
realizing that our “dream” looked very different to what we imagined. Great
respect for the doctors and the nurses. They did everything possible to help
our baby and to allowing us to be involved with our baby's care. They listened to us
endlessly.
A long period of
iucertainty and examinations started. Every day we arrived at the hospital with
that little hope they finally found the cause of Aloïs' problems. Every day we prepared ourselves for when they couldn’t give us the right answer. Meanwhile, we tried to enjoy our little darling who recognized the smell and sound of our voices voice
while in the womb. That intensive bodily contact was really marvellous! My
husband and I took turns in those wonderful moments. We couldn’t do more at
that time.
After 3 weeks,
we got the long awaited answer. Aloïs was diagnosed PWS.
PW what???? Never
heard about it!
This syndrome seemed to be very rare. We started searching on
the internet – the worst decision ever. Total panic at home! What does
PWS mean for our family, our jobs, our life? How will his sister, our parents,
our surroundings deal with it? And above all, what does it mean for Aloïs? We had appointments with several doctors: endocrinologist, gastro-paediatrician,
physiotherapist, paediatrician, geneticist,…. we got a lot of information to
cope with. We understood: "your little boy will be different, your future life
will be otherwise than expected and planned."
Could we handle this? What did it
all really mean? What will be the impact on our lives? We had a roller coaster
of emotions, went from one doctor to another and realised: this will remain for
the coming weeks, months, years!
Once we had accepted
this reality, the time came to enjoy our child. And we did it a lot! And still
do! Every day we’re surprised and amazed about what our son can do. What willpower he has! Remarkable and admirable!
We’ve adapted
our life to Aloïs. Everything is well organised, planned and structured. We have
a lot more hug times and enjoy them. Our patience is sometimes put to the test, the
combination work/family is not always simple but we are oh so enriched in our
lives by this. Once in a while we get out of our emotional roller coaster of
life to consciously dwell on 'today' and that feels good.
Aloïs is now 1,5
year old and he can walk holding our hands. Sometimes he babbles for half an hour - a
completely incomprehensible story! He knows exactly what he wants and doesn’t
want. Every evening he gives his sister the hug of her life when she comes home
from school. He is our cuddler! We still go twice a week to the physiotherapist and recently we go
to the pool for water therapy which he adores. His weight and height are good, thanks to GH.
We’re convinced
that we get to where we want to be with the help of a lot of love, patience
and understanding and we do that in our own way.
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