some of my friends and relatives are going purple tomorrow. all in the hopes to create awareness in the society of the severity of being prematurely born. and because Fateha is one of those strong, miracle preemies, i will go purple!
prematurity is serious. life can be so fragile. i remember being in the neonates, sitting next to the incubator everyday, praying that Fateha’s life would be extended so i could visit her and bring her home one day. i was there for her, every single day, because all i could think of was her. my priority was her. my own personal life, personal needs and wants were no longer important. i couldn’t concentrate at work; thinking about my little preemie’s being. because giving birth to a 26 weeker who weighed only 825grams was no joke.
how was she? was the doctor doing everything he could to make her survive the ordeal? were there any new upsets? were there anymore brain scans? did the ophthalmologist find her vision worsening, or did it improve? how was her intra ventricular hemorrhage,? did it get any better? there were so many questions flooding my every brain capacity.
there were many times when i felt like quitting my job and just stay in the neonates to look after my baby. many times! but i know, we couldn’t afford it, for the hospital bill was mounting. so i would rush to the hospital in a cab right after work; with bottles of frozen expressed breast milk in a small red cooler bag. and i stayed there for at least 4 hours before someone came to visit Fateha and fetch me home.
while i was there, many new things i learnt; from doctors to nurses and the occupational therapists. her condition was improving, she was maintaining her breathing, her Retinopathy of Prematurity (a disorganized growth of retinal blood vessels, and in serious cases, can cause blindness) improved, and she was feeding well which resulted in healthy weight gaining.
every preemie parent dreads going to the neonates to only hear things are not going so well. i watched many other preemies in the neonates going home happily with their proud parents but Fateha was still staying. no news of homecoming. each time i asked, the neonates staff would say, “don’t worry, she will go home once she is ready.”
the nurses there were the loveliest! some gave me advice, some tips on how to look out for this sign and that sign. hey, they even let me change the diapers from inside the incubator! that made me happy. i know, other moms would say “hah! changing diapers only, what’s the big deal?”
oh boy, it was a HUGE deal especially when your baby was a preemie and was all wired up. a little rough movement would trigger the alarm. oh how i hated those beeping noise makers! they always gave me a scare each time they beeped when i touched my baby. and carried her for the first time, 3 months after her birth, was heaven.
the memories of carrying her, we had to put on plastic aprons! like those butchers in the market, really!!! the reason why it took us 3 months to carry her (while other preemie moms in the US were able to do this much earlier) not because i was scared or nervous. it was because, there was a nurse who didn’t have the confidence to allow me to take Fateha out of the incubator. never mind.
we were more than happy when she got transferred into a high-dependency room; there was a bug going on in the main room (if i remembered correctly) hence the transfer. what we liked about it was because of the privacy that we had, although the room was small. soon after, she was all ready to graduate without the need to bring any oxygen supply home.
looking back at almost 6 years ago; the dark days that we went through, the nights that we spent crying and worrying, they are all bitter but definitely sweet memories. we thank everyone who have given Fateha the support that she needs, the caring hearts that prayed for her well being and also to those who looked at Fateha with nothing but complete ignorance. you have all been great!
so to show that you actually care (i know you do), you can wear purple to raise awareness of prematurity, tomorrow.
and i shall leave you with my favourite song, NICU At Night.
it was something that we had all been waiting for and 5 years to be exact. i didn’t believe that it she really did it because the waiting time was just too long that i was having thoughts of her not able to do it at all and would be needing an aid for life.
my heart teared with joy at seeing her sheer determination to walk independently. now that she “found” her legs, she couldn’t stop walking. she was too excited to be able to do something that a toddler could easily achieve.
so i guess, she will not be needing these crutches anymore. but we will still keep ‘em, for all the memories she had with them.
before she turned one, Fateha seemed like any other babies. so normal, so perfect. bubbly and chubby. only thing that i observed was that she had some delays in her gross motors, which i thought was pretty normal for an extremely premature baby. little did i know that things were not going the way i hoped it would.
i recalled the first diagnosis that fateha was given, other than having intraventricular hemorrhage when she was in NICU (no, that was a trauma to the brain that caused it to bleed), i was told that she had a birth injury called erb’s palsy. this diagnosis stayed with us till today. apart from that, her delayed walking was not discussed much; it was just brushed off as global developmental delay (her speech was part of this).
i was curious to find out what was her primary diagnosis and her main condition that hindered her from developing like normal kids. i went into my own research; watching videos, tv programmes and readings about children with global developmental delay (gdd). but i was disappointed. none of them matched what i was told about Fateha.
looking at her gait, how she bent her knees while walking, and how she uphold her posture while walking; they all matched to kids with cerebral palsy. something that i did not want to accept. no, my child could not be having this disability. and when we brought her for a neuro appointment in july, we heard the word “cerebral palsy” being mentioned by one of the neuro team while they were working on her. my heart cracked. this, no one knew (until now that i am writing this).
today, another scheduled neuro appointment, i learnt two new diagnosis. from the same neuro team. how could this not be detected earlier when there was not any difference with Fateha’s condition? sigh. when the associate professor was assessing Fateha’s arm, instructing and discussing with his team of doctors, he mentioned to them that this was not erb’s palsy, like what was written in Fateha’s medical file since 2008.
then they mentioned that a classic erb’s palsy patient would have what they called a waiter’s tip hand, like the above picture. and Fateha did not have any of it. just that her biceps, deltoid and triceps were all tight and caused her arm to bend. they said it was because of muscles contracture. but i believed that was indeed erb’s palsy. just that it got worse that her muscles got contracted. sigh.
and to improve the condition, another surgery was planned for Fateha. this time it would be to stretch and lengthen her contracted biceps so that she could bend her elbow downwards and upwards like normal people would. for that we would have to do an intensive therapy, something that we had done before when she had a tendon transfer procedure when she just turned three. it did not have much progress and improvement.
when her calves and ankles were assessed, the professor also planned for another botox treatment. this time, it was meant for softening her muscles around the ankle. all for making her walk properly without tiptoeing. and when i was passed the appointment card, along with a form for the treatment, i saw what was written in the primary diagnosis. spastic diplegia.
i swear i had a puncture in my heart. what was that? i thought it was cerebral palsy, like what they mentioned previously in july? and now a spastic diplegia?? i requested for a letter from the team of her condition. and i mentioned that they needed to be specific and accurate. i told them that i needed it so that it would be easier for me when in case i had to produce something when enrolling Fateha in a mainstream kindergarten. luckily, they obliged and wrote me a diagnosis right away.
when i got home, i googled spastic diplegia and sighed a relief. it was just another word and a form of cerebral palsy, where a highly tightness and stiffness found in the lower part of the body; legs, hips and pelvis. i need to learn medical terms, like, right away. so that i would not faint or get a heart attack when i hear a different diagnosis.
in the mean time, i need to bury myself under my duvet. see you guys in my next post when i come out for air.
We brought Fateha to the rehab clinic today for an appointment with the Neuro team. Prof James Hui and Prof Stacey Tay were the heads today.
They touched her Erb’s arm, her calves and ankles, and concluded that she was having a nerve problem. Nothing to do with her brain. Alhamdulillah. She had to walk in front us and the team, of about 11 people, with newly brought in crutches from Germany.
We were recommended to get them instead of the quad sticks because the latter would not help her to be in the right posture.
I have never seen her so brave and determined to use the aides. Good job, little girl!
Posted from WordPress for Android
High in potassium.
Well actually I am hopeless when it comes to what vitamins or minerals that can be found in food. I just know how to eat them. So do not ask me what’s good about them.
But I do know that some people say bananas are good for…you know…if you have constipation. And Fateha has not been to the loo to do No. 2 for days now. The last one that I can recall was somewhere last week.
THAT IS BAD!!!
So we are going bananas. Hope she’ll have loo trips now.
(or is it papayas that help?)
Posted from WordPress for Android