Our little miracle Brielle made a very early entrance into
the world at just 25 weeks and 3 days gestation. I had a terribly rough
pregnancy – bleeding, bedrest (over 7 weeks, both at home and hospital), high-risk
doctor appointments and many, many ultrasounds. All thanks to a chronic
placental abruption.
After an emergency C-section delivery, Brielle struggled for
her life for 6 months in the Neonatal Intensive Care Unit (NICU), back in the
Seattle area, USA. Looking back now, this was the hardest time of my life, as
we were constantly faced at the prospect of losing our daughter. I don’t
remember how many times different doctors and practitioners talked to us about
her being so sick and the real and immediate possibility of her dying.
My
baby is not one of those success stories of 24/5 week preemies that you hear
about. Meaning well, people told me stories of such babies who had grown into
athletes, professionals, this and that, with no long-term issues or
disabilities despite their extreme prematurity and low birth-weight. I think they wanted to give me hope or
consolation for having such a teeny-babe. But no such luck for my Brielle. She
had a long and hard NICU journey.
She
developed MRSA pneumonia, twice, in her first weeks. She was very dependent on
high concentrations of oxygen for a long time, beginning with the ventilator
for almost three months. She developed Retinopathy of Prematurity (ROP) as a
result and has had six eye surgeries, and is now mostly blind. She also has a
chronic lung condition (brochopulmonary dysplasia) and asthma. She’s been on so
many courses of steroids and medicines. During her first 2 years at home, she
was admitted to hospital every few months for chest infections. We had oxygen,
a suction machine and an oximeter at home.
She
suffered a significant brain bleed shortly after her early birth. As a result,
she has low tone cerebral palsy. She learned how to sit up unaided shortly
after she turned two. She could pull to stand at her third birthday. She is
learning to walk with her yellow walker, and is very strong willed, but still lacks
the balance and trunk tone to stand unaided for more than a few seconds. She usually
gets around in an adorable kind of bottom-shuffle, very quickly now! She is
also learning (when she’s in the mood) how to self-propel in her fuchsia-rimmed
wheelchair.
Brielle
is profoundly deaf and now uses bilateral cochlear implants to listen. She is
still non-verbal, and I think sign language will always be her first language.
Because of her very low vision, we mostly use tactile and body sign language
with her. She is learning signs in response to our speech. It has been so
exciting to see her little-self develop…she recently started initiating conversation,
or asking for things, by doing a simple sign.
Brielle
has a statement of special educational needs and a 1:1 assistant in school. In
some countries such assistance for deafblind children are called
‘intervenors’. She also had support with
the Sensory disability services, both a teacher for the deaf, and a teacher for
the blind, before moving to a specialist school for sensory disabilities.
Feeding
has been another big struggle for Brielle. With her extreme prematurity and
complications, and breathing support, she missed a lot of the early
opportunities for feeding. Hence, bottle and breast feeding were never a
success. She first had a orogastric tube, then a nasogastric tube, and then has
had a gastrostomy tube (usually referred to as “PEG tube” here) placed since
she was around 3 months old. Feeding therapy and different techniques have
yielded little success. She still will only take small sips of liquid and
little tastes of yoghurt, soups, etc. and does not like to swallow. She refuses
most food. We are waiting for another swallow study, and will begin working
with another specialist- feeding dysphasia speech therapist.
I
switched over two years ago to blending Brielle’s complete formula with real
food ingredients, which I feed with a syringe into her PEG tube. We have
noticed a huge change in her overall health, energy and reflux since moving
from processed medical formula, so I am a big advocate for home blended formula
for tube-feeding.
I have struggled many times accepting all of her disabilities and the things that she, and we, have gone through. It seems so unfair. Why my baby, why Brielle? I don’t have all the answers. I do know that God gave her to me, and I am thankful she is alive and living life to her full potential. She brings us all so much joy, and she is a very happy 5 year old J
I couldn’t count on my hand the number of times my mom and my friends have said something to the effect of “It’s a good thing that you’re a nurse. I could never care for Brielle.” Yes, I agree that my nursing background and previous learning has prepared me for some of the tasks and care needed to look after my daughter. However, it’s entirely different caring for your own child. I am thankful that my previous knowledge works to my advantage in caring for her, but sometimes I just wish I didn’t have to be “nurse” to my own little one.
Before
Brielle, I had never seen a premature baby, never set foot in a NICU or held a
teeny baby on a ventilator with all sorts of wires and tubes attached.
Getting
her out of the incubator and onto my chest took the assistance and watchful
monitoring of three professionals and was highly stressful at first. No amount
of training prepares you for seeing your precious babe hooked up to all sorts
of machinery and fighting for their life, countless alarms beeping in the
background.
I
have many friends who’ve learnt the expert care for their children, with no
nursing or medical training. You just have to. If you have a child with
medically complex or special needs, you pick up the skills you need to best
deal with their care and help them thrive. That is a parent’s role and calling.
We do it out of pure love. And I believe that you could do it too, if that is
what life brings your way.
I’m
very blessed to have three great big helpers! Brielle is my youngest daughter,
she has three older sisters who absolutely dote on her! Ironically, they were
all born late and big. Each of them have learned how to interact with Brielle effectively and gently.
You don’t know how many times I have thought to myself “I’m so that she’s the littlest and I have her three
big sisters to play with her and help me out a little.”
My 9
year old Annabelle wants to be a nurse when she grows up and has learned how to
do her sister’s syringe PEG feed, and give her an inhaler. This was certainly
not forced, as she’s been nurse/doctor/mommy to her teddies and dolls long
before learning some skills with her sister.
Beth
(7), scoots around the floor with her little sister and tickles her, sings to
her, reads her books, plays blocks with her. Kaitlyn (11) will carry her, let
her lay upside down on her lap (her favorite position), read with her and get
her dressed! To see her giggling in delighted response or stroking their hair
or bare skin, or taking turns in play, despite her being mostly blind and deaf,
along with other difficulties, makes my heart so glad.
My
priorities in life have drastically changed with having a daughter with complex-needs.
We want to see Brielle flourish, so her
health, well-being and development is often central in our everyday planning.
The rest of us have learned to be flexible
and work around her needs and schedule. We have to. We have a very unique little person to consider and nurture. We want the absolute best for her. And we are prepared to sacrifice and love as a family to give her what she needs to thrive. After all, life is a balancing act!
and work around her needs and schedule. We have to. We have a very unique little person to consider and nurture. We want the absolute best for her. And we are prepared to sacrifice and love as a family to give her what she needs to thrive. After all, life is a balancing act!
I’d
say raising a daughter with special needs has taught me how some things are far
less important than I used to think. After all, being alive, enjoying every new day of life and having meaningful
relationships is so much more valuable than possessions, money, job status, a
tidy house, and jam-packed schedules with exciting activities.
Being
a special-needs mum has also taught me what it means to be my child’s advocate.
As a mum, I naturally want to protect, nurture and walk alongside all my children, in every aspect of
life. I will speak up for them and fight their corner ‘til the end! I
definitely have a strong ‘mama-bear instinct’ when it comes to standing up for
Brielle’s rights. More so with her than with my older typically-developing
girls. I think it’s because she’s much more vulnerable, needing assistance in
all areas of life. And she most likely always will need a fair amount of
assistance due to her disabilities.
So
my advice to parents with a child/ren in the NICU would be – hang in there,
avail of everyone’s offers of support and help and take each day at a time.
Your baby may be fine, your baby may have long-term issues like mine- but you
will learn what to do and it will be ok.
If
your child has disabilities or health problems, please find people to talk to
about your emotions and how you are coping with it, and there are support
groups and charities ready to help too. There can be so much going on, so many
unknowns, and you really will need a lot of support. But you will learn a new way of life, and you
can help your little one to thrive and be successful. I have gotten many kind
comments from her health professionals on how well she is doing, and that she
wouldn’t be if it weren’t for the love and time we have for her.
One
of my greatest joys is that Brielle is alive today and living life to the full.
Each day she is learning new skills and how to navigate her world. Yes, she
still needs lots of support and help, but above all, she is absolutely happy, and she is loved beyond measure.
Brielle THEN & NOW !!
