in less than a month, my little baby will be turning a year old.
her development has been progressive so far although, i must say, she is taking her own time to grow her teeth. i have been waiting to see some pearly whites to pop out but nope. her first tooth is still not showing any signs of eruption. her gums are still bare but i gotta admit that they are quite hard already. she bites while nursing but lucky me she is still with bare gums. or else, there would be a crime scene.
and yes, we are still nursing. YAY! we are so close to reaching my goal and i am so excited! i am not ambitious enough to setting a goal of nursing for two years. one year is already good enough. and i will let nature take its own course, yea?
talking about nature. these days, i simply cannot be bothered to religiously pump every 2 -3 hours. i am still producing which i think at an amount that is adequate enough for Fateena. i used to get 240ml in one session, which of course i divided into two feeds. then the volume gets lesser. on good days i can get 160ml – 180ml. on lousy days (that is, days when i am too exhausted, too busy with assignments etc), i will pump out 100ml. yea, that amount is good enough.
i know i get envious looking at pictures of full-to-the-brim freezer with breast milk but when i think about it, i got no space in my freezer for that kind of crazy milk production (though i wanted to get like that)!! some moms would go to the extent of getting another freezer to store their milk. looking at my tiny kitchen, i cannot find a suitable corner for another freezer. so, no thanks.
for the fact that i have beaten my old record, back with my firstborn, i think i am doing good this time. but i will certainly want to make it better next time, when my 3rd one comes.
(no i am not expecting. i am just saying.)
from lilac to violet, plum to mulberry, mauve to rhubarb. we all were donning purple of all shades today.
all for one little ex micro preemie, whom once we thought would never make it.
Fateha’s colour was more of a raisin purple, while the littler one wore lilac. cos lilac suits babies. awww
thank you everyone for supporting this cause and wore purple to commemorate World Prematurity Day for Fateha, and all of the millions micro preemie, born too early, in this world. we also have to remember those preemies who have departed to be with the Almighty.
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.
she had lots of fall over the years and lots of bumps, swells and cuts. most were in the region where i did not squirm at the sight of the bleeding flesh. i did not even squirm when cleaning up her dressings after her corrective arm surgery.
but nothing could be compared to what befell on her yesterday.
right after we reached home from our charcoal grilled lunch, the husband’s treat, Fateha was sent to the bathroom for her shower by our helper. what happened after that made my heart jumped out of its ribcage (literally). hearing a loud thud from her bedroom, i nearly clapped my hands (i know that was wrong). i knew that Fateha had a fall because, knowing her, she wouldn’t keep still while changing into her peejays.
but when i heard an unusual screaming in pain, i thought something must be wrong. and after hearing the helper screamed “blood! blood!” i rushed into her room and found the little girl sitting on the floor next to her bed. the helper was crying, too shock, i guess. that was the first time she witnessed Fateha all bloody. oh yes, she was.
we carried her out into the living room and that was when i saw blood, so thick and red, trickling down her face. but i still couldn’t make out where the wound was until i laid her on the sofa. i gave a visual check on her and realised that she had a cut on her eyelid. hubby came rushing out and took off his tee to put pressure on the wound. the helper was still crying.
he gave her a good 20 minutes to stop the blood.
cleaned her face with wet wipes and we got a bottle of sea cucumber oil (a traditional remedy for cuts and wounds) standby. once the wound was all cleaned and the bleeding stopped, we applied a small amount of the oil. and after all this mad rush, she told us she wanted to rest and sleep.
we did our own CSI with the helper and asked her what had happened. it was concluded that Fateha was very fidgety when she was changing and accidentally spun on feet and hit her eye on the corner of her bed. yes, the corner. no wonder the cut was really deep and bad.
a lot of people asked why we didn’t bring her to the doctor for a stitch? firstly, the eyelid is very thin, no way it will get stitched up. and we believe in the sea cucumber oil. it really does wonders and heals wounds super quick. don’t believe me?
see? today, the wound has closed up and is certainly drying. furthermore, she doesn’t complain of pain anymore. and we are lucky that her vision isn’t affected. although i did think of the worst yesterday.
so what’s next?
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.