The world in
NNICU is one heck of a rollercoaster; ask any mother who has delivered a prem
baby. Premature babies are volatile in their progress, and the strict policy
that is adopted by the neonatal unit doesn’t make it any easier for parents in
terms of taking your baby home. Of course, they will not allow discharge before
they are 150% certain that your baby is healthy and strong enough to sustain
him/herself, particularly in terms of feeding.
The road
to recovery in NNICU for our baby girl was one that lasted two months. Two
months of not being able to sleep well. Two months of people constantly asking
when our baby will be coming home. Two months of emotional ups and downs; every
day being different from the previous one. It may not sound like a long time,
but let me tell you that being separated from your little one in his/her first
65 days of life is no joke at all. Seeing other parents walk in and out of the
unit, feeling the pain of other mothers whose babies were not progressing,
feeling disappointed that our baby was not progressing as fast as others were.
It was a complete nightmare. The reason for her extended stay was because baby had
been diagnosed with hypotonia, that is the medical term for poor muscle tone.
In other words, her muscles were not as tight (tense) as they should be, which
causes her to remain a bit “floppy” in which case she has to be supported
especially in the neck area. The problem with being diagnosed with hypotonia
during early infancy is that it often affects the baby’s ability to feed, as
their sucking reflex is either not developed or not strong enough to feed
(whether they are breast-fed or bottle-fed). The doctor recommended speech
therapy whereby the therapist would help stimulate the baby’s sucking reflex by
adopting certain exercises (for example stroking the centre of the tongue with
the finger). Regardless of the amount of stimulation she received from speech
therapy, she seemed to progress in her own time. We waited in anticipation for
the day that she would start sucking. Until then, she would be fed through the
nasogastric tube. It was terribly frustrating, since it was the only obstacle
that held her back from coming home to us. It was difficult being caught up in
the world of NNICU. My life felt as though it had stopped for those 2 months
that baby was in hospital– nothing else mattered. I went to hospital every day
at least once a day, from the day I was discharged from hospital until the day
she came home. Sometimes I even went twice a day. Or thrice. Never mind the
fact that I needed rest in order to recover from the op, I just could not bear
the thought of her lying in hospital surrounded by unfamiliar faces and voices.
What made it harder, was the fact that nobody could tell us when she would be
coming home – it was all up to her.
One morning
out of the blue, the nurse called me screaming through the phone “SHE FINISHED
HER BOTTLE! WITHIN 30 MINUTES!”. I was in complete shock. How could she have
finished an entire bottle on her own without any assistance from the nasogastric
tube, JUST LIKE THAT? At that moment, I realised our prayers had been answered
(after a month and a half). Everything we ever wanted, everything we had prayed
for, was finally happening. Alhamdulillah! The speech therapist had recommended
the use of a special bottle and teat which was meant for babies who were born
with cleft-palates. Of all the bottles that we had tried (Nuk, Nuby, Pigeon,
Avent, Tommy Tippee) the special needs bottle seemed to be the magic answer. That
entire week, our whole family was on a high. I decided to prepare the nursery,
convinced that she’d be coming home. I repacked her clothes in her drawers (for
about the eighth time since she’d been born) getting excited as I unfolded the
tiny premature vests and tights. I knew it was only a few days until the doctor
would tell me that my baby, one of the veterans in the unit, was nearing discharge.
The day
before the doctor had planned to remove the nasogastric tube for good (the baby is
required to feed independently from the nasogastric tube for 24 hours before
he/she is discharged), the same nurse called me again. “She didn’t drink her
bottle this morning. I sat for 45 minutes and she did absolutely nothing. I’m
going to have to tube the feed”. I put down the phone and burst into tears. My
husband reassured me that there was still hope; she could just have been
exhausted for some reason. The next feed, she was exactly the same. Nothing. It
was almost as though she had forgotten how to suck (which often happens to prem
babies by the way). All she did was sleep, like a lifeless machine who only
knew how to breathe. I spoke to the doctor, who said that we should give baby a
break from bottle-feeding for a couple of days. Which only meant one thing: we
still didn’t know when she was coming home. I had high hopes, because it was my
birthday during that week. I decided that my birthday gift would be her
home-coming. But hey, who was I to plan when the Lord above does all the
planning? Totally crushed at the dip she had taken, I went to visit her each
day and sat there with a heavy heart. All our “neighbours” were on their way
home. I begged the doctor to do something, but they couldn’t do much except
wait it out. My mom suggested I stay with her for a couple of days, and the
doctor suggested that I stay at home. They were afraid that my negative state
of mind would affect my baby – they feel what you feel. After a day of taking a
break, I decided to go back because I just missed her so much. As I walked in,
I saw that she had been moved from a normal cot into an incubator. My heart was
racing – what could it be? I walked closer and saw that she was undergoing a
blood transfusion. They explained that her blood count was low which may have
contributed to her low energy levels (which affected her sucking – it’s hard
work for such a tiny being!). I felt terrible, what kind of a selfish mother had I been to
be so negative whilst my poor baby girl was going through so much? I watched as
she was being pumped with some stranger’s fresh blood. She was sweaty,
restless, and crying non-stop. It was the most heart-wrenching experience as a
mother. But at the same time, I could instantly see her regaining her strength
and energy. I was silently thanking the person who had been the blood donor. It
felt good to see her full of life again. I knew then, that this was the
beginning of the end. And man, what an ending it was! The transfusion was the
best thing that could have happened. She started sucking again, and they
removed the nasogastric tube for good. Five days later (during the waqtu of
Yoummul Jummu’a), the doctor came to see me. She said she would be discharging
our baby angel, and asked if I was prepared to take her home that day. I was
ready to rip her head off, what would make her think that I wasn’t ready to
take my child home after so long? I rushed home to get her things, my body shaking
from the adrenalin whilst I drove home. Everybody in the unit was absolutely thrilled
that baby was finally on her way home. It was a bitter-sweet experience saying
our goodbyes; it was the only place she recognized as being her home.
Sleeping peacefully in her nest
Saying goodbyes...
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