Tongue lip adhesion..and the reversal procedure

Irfan has underwent a tongue lip adhesion procedure when he was at 5 months old (1 June 2015). It is a procedure to open the airway by temporarily sewing the tongue to the bottom lip in infants. In mild to moderate cases, a tongue-lip adhesion is a successful way to keep the tongue from falling back and blocking the airway. In his case, the surgeon decided that he must undergo the procedure since the 1st operation, which is supraglottoplasty that took place on 31 March 2015 due to his laryngomalacia did not manage to resolve his breathing issue. 

Now that his larynx has strengthen and he no longer has stridor and retractions when breathing, it is just about the time to release his tongue lip adhesion. Furthermore he already has 4 teeth on the upper gum and 'some' teeth on the lower part, which means his tongue needs to be detached from the lip so that he doesn't bite his own tongue. 

The release of his tongue lip adhesion took place on last Monday, 21st March 2016. He went to OT in the morning, under full GA. It was his 3rd operation, and this time around i was the one that hold and accompanied him all the way to the OT room. The procedure was a success, despite him being cranky on the first 24 hrs post-op due to no fluid was allowed for several hours, and the fact that he can only take plain water or milk via a NG tube in the evening. He screamed his lungs out upon seeing his bottle, and the feeding process via his NG tube was really challenging. No solid was allowed at least for 48 hours, so that adds on to his crankiness. 

Lucky it was just an overnight stay, he got discharged on the very next evening, that after me having a hard time trying to persuade and convince his surgeon that Irfan is ok and fit to be discharged. Of course his lip and tongue are still a little bit swollen with stitches, and we got home with 2 different types of antibiotics.

Irfan is really a new baby now. To our eyes and his brothers, he looks like a different baby altogether. Whenever he smiles, the 4 white teeth (which is previously hidden by his tongue) at the bottom gum is now visible. He bites hubby a lot on his 1st day at home after discharged, probably 'lepas geram', feeling curious and just figured the fact that 'oh so now i have something that makes chewing and biting more interesting!'. I am happy to see him able to bite his biscuits easily. I feel more encouraged to look up for new recipes and introduces more textures into his solids, without worrying him get chokes and vomits.

Most importantly, I am grateful for Allah has made it easier for him to live his life as days pass by. Any person that see him today would never thought how rough his life has been before. How he had struggled for air just to breath, how miserable his early days  for not being able to sleep even for more than 10 minutes, how he continuously wanted to breastfeed because the calories he were getting burned quickly and used up a lot for breathing only, how he had spent 3 mths in the hospital after his 1st op and got series of infection, how he was put on a CPAP o2 machine to aid in his breathing, how myself and the nurses need to do suctions at least 3x a day to take out the unexplainable lots of secretions from his body, how he was put on an NG tube for feeding all the time and not being able to take anything orally, how he was put under several physiotherapist to massage his whole body due to being bed-ridden for too long, and how miserable my life has been for being away from hubby and my other 3 growing kids, looking pale and down almost all the time since the doctors were unable to give answers and hope on when Irfan is going to recover. Those uncertainties are painful to swallow, almost unimaginable to digest, which sometimes i even hope to temporarily 'pengsan' and shut down my body so that i don't have to remember all the pain.

To all my friends who are being tested, do not give up, gather your strength and always have faith in Him. Everything is coming from Him, and only to Him we return and ask. May Allah eases our ways in striving for barakah in this world and Hereafter.

Thank you all for your endless prayers, for the love and support showered to us, i can never repay your kindness and i always hope Allah will give you something in return for your kindheartedness. Amin.

Love,
-mama Irfan Faris-

Irfan Faris..2wks to 1yr old

My shepett. 2 wks to 1yr old. He took 2-3 steps for the past few days, quite too soon to ppl who had known about his past. He only rolled over at 7m+, after 3mths being in a hospital, and undergone 2 surgeries. The doctors kept on telling us, ur son gonna hv some delays in his milestones. He was arranged for OT and PT right after discharged, not to mention frequent f/up with all of his attending doctors; ENT, Paed & Paed Surgeon. Our schedules were tight, really tight i must say (thank God he hates the therapist, so we ended up doing the exercise at home ourselves). I've never thought i would be able to come back to work, looking at his condition that time. Sometimes we think that this is the best for us, but Allah knows best above all. Have faith in Him, and move on. Easier said than done, i know. I feel you. You are not alone. Stay strong mommies. This shall pass, i promise.

#throwback 2015

2015 has been a challenging year, for our family. Things that happened has really become an eye-opener, for me and hubs. It was a long journey, a rollercoaster ride, moments that i wish i can write them off of my mind.

It all began in March.

12th March - Irfan was first diagnosed with Laryngomalacia. A severe one.
31st March - his first op. 3 weeks in PICU. Continuously on breathing machine and NG tube for feeding. He was then transferred to a normal ward. My already hectic life turned into nightmares. Sleep-deprivation, mentally and physically exhausted. I looked far worst than a bibik so to speak.
Early June - his 2nd op.
End June - He finally discharged from PPUM, after a 3-mth hospital stay. Our most dreadest moments in life..so far.

and the rest is history.

I don't wish to recap the details, as reminiscing all those moments are really painful. It brings tears to my eyes, each time the memory kicks in. It brings tears to my eyes, each time i accidentally flip the old pictures of him, wearing that oxygen mask, that feeding tube, all those wires around his body, etc. And because of that i don't dare reading my old blog entries, mostly written when i was in hospital, with him.

Those are the past, and now he is thriving well, though not 100% fully outgrow his LM. He still has another 1 minor op awaiting, soon.

I am leaving everything to Allah. For He is the best of planner, not matter how perfect our plan is.
I need to be positive, remain strong, and have faith in Him, always believing that whatever happen is the best that Allah has planned and arranged for us. Insya Allah.

On the other note, 2015 has been a great year for us as well. Idlan and Firas ended their schooling years pretty well, and we made it to NZ, yeay!

I hope 2015 has been a good year for you guys as well.
and lets strive for a better year in 2016...amin.

opss my #throwback is pretty short don't u think?
well some things are better kept to ourselves.

------------------------------------------------------
After 3 mths of maternity leave, followed with a 7-mth unpaid leave, i am nervous about going back into office this Monday. Now where did i throw my mouse?????

Coping with Laryngomalacia...a special message to LM mommies

Dear mommies,

I know how's the feeling when we have to go through series of endless nights.

I know most of us are sleep deprived,  becomes a zombie at daytime, while still needs to juggle with cooking, laundry, attending to our other kids, and whatnots.

I can totally relate when your baby wakes up, screaming in pain in the middle of the night because of the reflux spell.

I can really understand when feeding solids takes a lot of time and patience.

I can understand the feeling of fright, anxiety, panic and worry, all the times, whenever we see our baby chokes during feeding and mealtimes.

I know we all hate viruses, because that could means another ER visit, ICU, or a long hospital stay for our fragile lm baby.

I know how people can get mistaken and misjudged lm, as lm is not just a noisy breathing. LM for most of us could also means failure to thrive, bad reflux, developmental delays, speech delay, feeding issues and so many other problems, which at times we wish not to think about it.

I know how anxious we are during each follow up appointment, wanting to know whether there's any substantial weight gain with our lm baby.

I know it hurts a lot when the doctors and professionals shrug us off, making that mocking face and just refuse to listen to our opinions.

But dear mommies,

Remember that you are not alone walking in this path. Believe in yourself that all these shall pass, and there will be lights at the end of the day. That day will eventually come, sooner or later, God Will.

Our child is a fighter, so do us their mommies. Keep fighting, be persevere.  You are your child's advocate. Do not let other people belittle you. Always listen to your instinct. No one knows better about your child than you, their mothers.

We never know what we'll go through the next day or months after, but we just need to move on. Lets take one day at a time, a meaningful advice from a dear husband, which i shall always remember and keep in mind.

Best of luck to me, and all of you, strong malacia moms! You are not alone :)

I'm 8 months young

Suka guling2. Make circles 360 degree, gostan ke belakang pandai, ke depan blom dpt ilham lagi hihi.

Duduk agak stabil, slightly assisted still. Tak lama dh nih bole lepas pegang insya allah.

High separation anxiety dgn mama, still. Yang ni mmg kes parah, sampai mak ude kena tutup mata dia bila mama lalu nk gi toilet :)

Takmo tido meniarap dh, tido menelentang pusing kiri kanan sesuka hati.

Selera makan ok, sama cam dulu. Kalo takde baby chair, jenuh perang time mkn.

Kurang minum susu. Nk main jer. Easily distracted ini budak, jenuh paksa dia baring time minum susu.

Stridor makin kerap pulak :(
Maybe sbb makin aktif, pas mkn dia pusing, cfm akan muak susu/solids. Harap2 larynx awak tak inflame teruk yer sayang.

Makin kerap kuar bunyi2 yg comel. Nek umi pun terhibur td..igtkn suara abg ammar. Rupanya suara awak!!

Hepi 8mo sayang mama. Cepat sembuh yer. Cepat2 merangkak tau..pasni bole kacau lego abang2 hehe

Hepi 7mo sayang!

Semoga sayang mama cpt sembuh,
Semoga cpt2 meniarap both sides..so that kurng clingy pd mama,
Semoga terus membesar dgn sihat,
Semoga sayang sentiasa suka mkn mcm sekarang :)

Irfan...1wk to 7mo

Alhamdulillah Irfan is getting better nowadays. We can hardly hear his stridor, stridor only presence when he is too excited, or too upset, or occassionally when sleeping.  I even sometimes went to check on him while he is sleeping just to ensure he is still breathing, since he is too quiet :) He is still on reflux medication, which i think needs to be continued for a long period until his LM symptom is completely gone.

He gained about 2kg for the past 2 mths, still below the chart but at least is making a good progress. He now weighs 6.575kg, 1 wk to 7mo. 67cm in length, which makes him on the 15th percentiles, ikut gene mama abah ni kot hehe. On EBM during daytime and Novalac AR at night time. He loves eating solid. He has had pumpkin, sweet potato, carrot, potato, dates, raisin, pear, apple and banana so far, all pureed. Some were mixed with rice, hence became a porridge that was finely blended before serve. Nevertheless i notice he didnt hv a good bowel movement when eating porridge, probably bec he took only a little of plain water, or maybe bec his digestion system is just not ready with rice yet. As such i plan to stock up enough fruits/veggies purees so that he can hv a combination of porridge + fruits/veggies in a single day.

He can roll from tummy to back and not vice versa. Obviously he doesnt like tummy time, and figure ways to roll back to supine position and just enjoy lying on his back :p sabor jela!

This little guy is so clingy to me, that he'll scream even when i'm out of his sight for seconds! I had to hv my lunch by sitting right in front of him, of course meal times takes less than 10min. He only sleeps around 1hr in the morning, hence i'll do the laundry, cooking, and shower within that precious 1hr. Mcm kilat buat keje :p He normally sleeps less than 1hr in the afternoon/evening..mmg x suke tdo kot budak ni. He wakes up about 3x at night, and starts the day as early as 530am! So mama jgn harap nk ada chance bgn lambat walaupun x pegi ofis!

How do i feel being a SAHM? 100x tired than being in the office so to speak. I dont hv the chance to lie down or take an afternoon nap, the never ending house chores makes me bored, everything needs to be done super quick, i miss my uninterrupted sleep at night, and yes i no longer hv the 'me' time. But this is my destiny at least for now, this is what Allah has planned for me though it has never been expected, after all He is the best planner and knows whats best for His servant :) Irfan is under my care 24x7, he grows up right in front of me, shower and fed by his mama, and i may become the 1st person to witness him getting a new skill when the moments arrived. Most importantly, he is less likely to catch any germs, especially cough and cold that are common for kids staying at day care and kindy. Byk kelebihan di situ Insya Allah. Membesar dgn penuh kasih sayang..manja pun sure terlebih2 nih hikss. Obviously he admires me a lot from the look and stares he gave everytime i hold him during feeding time. 

Today we had donated Irfan's kangaroo pump to the hospital as he no longer needs it. The pump was bought using the fund that was contributed by all of you. To all my dearest friends, officemates and family members, surely theres no way we can repay your kindness. Moga Allah membalas jasa anda semua, dan moga anda semua mendpt pahala di atas pam yg bakal digunakan oleh patient2 lain di hospital nanti insya Allah.

Tq very much all. Pls keep on praying for Irfan. We dont know when he will fully outgrow his LM and reflux, it may takes months, or even years before he is completely recovered. Kami kena yakin dgn janji Allah, dan insya Allah redha di atas segala qada' dan qadarNya. I also want to believe that there'll be rainbow after the storm, and there'll be shades of light at the end of the day. Reminiscing the past and what Irfan had gone through made me teary. I really hope tomorrow is better than today not only for Irfan, but all of us... insya Allah.

Hepi 6mo my special baby!

Menu arini puree pear..obviously he loved pear more than carrot that i made yesterday. Suka mkn manis ye sayang..tiru sape la ni ek :p

Irfan tdo kt hotel mlm ni. Saja nk amik hati abg2 yg sangap x jln ke mana2 time raya ni. Abg2 bila tahu abah book hotel, masya Allah punyelah excited bukan main. Siap tanya knpe duk sehari je..knpe x duk lama sket? Rasanya dah dekat 7bln kami x bwk derang gi jln2...last tdo hotel before mama lahirkan irfan dulu. Hotel dekat je..15min dh sampai hehe. Tak berani nk bwk Irfan jln jauh2 lg..takut dia penat. Sekarang ni bila dia kalut sgt or excited, stridor bertambah kuat...dan of course byk tenaga digunakan utk breathing.

Hepi 6mo sayang mama. Moga sayang membesar dgn sihat. Moga dgn izin Allah  sayang akan sembuh sepenuhnya suatu hari nnt...amin.

Irfan turns 5mo today

Our special baby turns 5mo today, how time flies. Finally after almost 3mths been here in the hospital, we'll be going home today, upon me and hubby's request.

Irfan's breathing and airway are still not ok, he is still having frequent stridor and chest/neck recessions upon inhale. Nevertheless we decided not to proceed with anymore surgery, despite so many theories and assumptions made by the surgeon. Two surgeries for the past 3 mths were rough on him, we just couldnt bare seeing him having to go thru tough recovery process again..at least for now we think that home is where he needs to be. Seeing his tiny little hands and feets being pricked so many times for courses of antibiotics via iv is painful. He has had so many dosage of steroids n medications, series of tests n procedures, etc which i bet is not easy for his little body to cope with.

Alhamdulillah, his reflux seems to be improved. The doc has allowed him to take bottle feeding once a day, to be gradually increased over a period of time. The rest of his milk intake shall be given via Ng tube through a feeding pump. I had a hard time introducing bottle to him, for he has been fed via a tube for 3mths..hence his sucking and swallowing reflex were poor.

It will definitely going to be a long journey ahead, for Irfan needs to undergo physiotherapy, occupational therapy and speech to improve his body muscles, tone n swallowing. He cannot reach for toys or even hold them tightly, and he still doesnt roll. There are lots of things that he needs to catch up, which he will go thru together with his mama n abah insya Allah.

That's all for now. Me and hubby cannot thank enough to all our dear family members n friends who keeps on praying for our little guy, and has donated a huge sum for him. May Allah rewards your kindness with more rezeki and pahala, may we all be blessed with whatever endeavours we're pursuing.

Please continue lending your prayers for him...and wish us luck for our journey ahead being a special parent to our special needs child.

Salam Ramadhan semua :)

My 4mo baby Irfan

My special baby insya Allah will undergo his 2nd surgery nx Monday..a procedure called  tongue lip adhesion. It wasnt an easy decision for both of us, but we hope that it is going to be the last one, and that it will be a success to improve his breathing.

Irfan has turned 4mo, which means he had spent the last 2mo in the hospital ever since his supra surgery.

Me? honestly i am still struggling to find the courage that irfan needs from his mother. I find myself to be happy at certain days, but most of the times i am at my lowest point. Being away from home, separated fr my 3 other boys, and having to see the condition of my poor Irfan 24by7, it is really painful. It breaks my heart, day n night. I know i wouldnt be able to persevere, if it is not bec of my dear hubby who keeps on being positive n stay on my side throughout this trial period.

Irfan sayang, maafkan mama sebab terlalu lemah yer. Mama akan cuba kuat demi Irfan. Moga Allah sembuhkan sayang mama sepenuhnya amin...

1.5mths post supra

irfan is still in the hospital...and we wud probably celebrate the upcoming Ramadhan here as well. He is turning 4mos nx week..how time flies.

Ya Allah..sembuhkanlah Irfan Faris ku.

3.5.2015

Hepi besday sayang....

Mungkin ni besday paling sedih buat awak.
terpaksa jaga irfan di hospital. mama akhirnya down with viral fever...lama sgt duk spital kot byk benar kuman2 jahat yg singgah kat badan. irfan plak masih tak stabil..demam, infection, non stop secretions, ekzema seluruh badan. Kesian sayang mama..mesti penat kan nak melawan semua penyakit2 tuh.

Moga kita terus tabah menghadapi hari2 yg mendatang sayang. walaupun terlalu perit utk ditelan. Hari berganti hari..semakin byk pula ujian yg menanti. Moga Allah terus berikan kekuatan kpd kita semua. Luv u till jannah....sori mama takde kasik hadiah tahun ni :p

Day 16 post op

It gets tougher as days passed by. Kadang2 mama rasa takut nak bangun pagi dan drive ke hospital, takut nk mendgr update terbaru Irfan, takut nk menerima kenyataan yg agak pahit utk ditelan. Bila mama tak update blog, maknanya mama terlalu sedih utk berkata2..down.. rasa sgt lemah. Deep down inside i know the surgery has failed, they are still looking up for answers, dan mama abah hanya mampu berserah dan berdoa sayang. Jika ini yg ditakdirkan utk irfan, kami akan terima dan redha insya Allah.

Byk kali doktor2 di sini tanya mama..are u a doctor? prof lucy di icu ni siap tanye..are u a paeditrician? mungkin derng pelik bila dgr mama sebut byk medical terms yg jarang org sebut. Derang x tahu siang mlm mama google n korek segala mcm info tentang penyakit sayang ni. Byk yg mama belajar..tp tak dinafikan, semakin byk yg mama tahu, semakin takut mama nk menghadapi hari2 yg mendtg sayang..Allah je yg tahu. Ada hikmahnya mama tak amik matriks sains bio kat ukm dulu. Mama mungkin boleh lulus cemerlang, tp rasanya mama x boleh jd doktor sbb mama terlalu lemah part nk kawal emosi. Silap hb mama menangis sama2 dgn mak pak patients hehe. Lagi satu, kalo mama pegi ukm dulu, mesti mama x jumpa abah sayang yg cool dan hensem tuh hehe. Untung sgt sayang ada abah yg sentiasa nmpk tenang, positif dan support mama everytime mama berduka. Ish abah mesti perasan bila baca ni :p

Laryngomalacia is a journey that we never planned, but insya Allah we will guide n embrace it together with you. Be strong sayang, moga dgn izin Allah irfan akan sembuh suatu hari nanti..amin.

Day 13 post op

Prof did a scope again this morning. Swelling subsided alhamdulillah. Nevertheless irfan at certain times seem unable to swallow his saliva, his secretions are still a lot, and they now referred him to a GI (gastro specialist) n recommend for a barium swallow study to be done. It could be the severe silent reflux that is causing his LM to be getting worse n not improving despite the supra surgery to correct his larynx. Yesterday evening irfan looked very unsettled, unable to sleep n kept crying even after feeding. The doctor on call increased his o2 support back to level 6 to reduce the distress.

Insya Allah mlm ni surau TS akan mengadakan solat hajat buat Irfan. Jumaat lepas alhamdulillah surau di ofis mama buat solat hajat utk irfan, semua atas jasa ex-bos mama (tq bos!:). Untung irfan, ramai yg tlg mendoakan sayang..special sungguh anak mama yg sorang nih!

2 minggu mama berkampung di icu, byk perkara yg mama belajar sayang. Erti sabar, erti sebenar usaha, doa dan tawakal. Melihat bayi dan kanak2 lain yg sakit di sekeliling irfan, mmg sgt menginsafkan mama. Ada baby chinese tu katanya kes dia lg complicated dr sayang, parents dia jauh duk kat seremban, jarang mama nmpk derng. Bila terserempak dgn ayah dia, kami sama2 bertukar senyuman..senyuman yg pahit sayang...mama tahu masing2 menaruh harapan..dlm pd yg sama berduka dan sedih bila lihat anak di depan mata terlantar tidak berdaya. Kakak yg buat fisio kat sayang tadi ckp..ada ibu tu ketiga2 anak dia menghidap CP..Allahurabbi besarnya dugaan ibu tu. Mesti ibu tu sgt kuat kan...jika tidak masakan Allah berikn ujian sebegitu besar buat dia....

Mama percaya Allah Maha Adil...Mama yakin Allah takkan menguji mama dan abah jika kami x mampu mengharunginya. Mama percaya sayang akan sembuh suatu hari nnt..mama dan abah akan cuba utk terus kuat, bersabar dan sentiasa meminta dariNya. Moga Allah mendengar rintihan mama..moga Allah berikan kesembuhan buat permata hati mama yg special nih...amin.

Tidur lena2 yer sayang malam ni..jgn nangis byk sgt..nnt mama risau. Sweet dreams..i love you.

Day 12 post op

Irfan is still on cpap machine. They tried to reduce the level fr 6 to 5 and see if he can tolerates well with the reduced o2 support. Secretions are still a lot, hence the frequent suctioning. His recessions look improving n not as bad as before alhamdulillah. The doctors also decide to stick with ebm and believe it will help a lot in building his own antibodies...insya Allah (Dr Alexis ckp susu Novalac AR tu taste awful hihi)

Semlm mama dan abah hantar abg2 ke rumah nek umi kejap..so that abah pun boleh stay kat hosp tgk Irfan :) Oh ujian kafa first sem baru2 ni abg idlan dpt no 1..abg firas no 2. Mama dgn abah mmg x sangka part abg firas tu hehe. Paling best, dia mintak hadiah nk main ipad tiap2 hari haha sabor jela. Insya Allah bila sayang dah baik, kite keluar celebrate sama2 yer. Mama tahu abg2 dh boring lama x keluar jln2 hihi.

Semlm lepas blk hospital kami semua pegi bli buku latihan utk abg2. Sian abg idlan, mama langsung x sempat nk buat revision dgn dia tahun ni. Jadi skang ni kami dh antar abg idlan pegi tuisyen. Kalau tidak dulu2 mesti abah dgn mama yg ragging dia belajar setiap kali nk exam :p Tahun ni mama langsung x sempat sentuh buku abg idlan..x tahu ape yg dia blajar etc. Abg firas takpe, baru darjah 1..jadi mama abah x risau sgt. kasi chance dia enjoy lagi...

Ok sayang, mama dh abis pam. Sweet dreams. Jgn lupa mimpikan mama abah yer :)

Day 10 post op...cont'd

Later this evening mama had a talk with the dietician. Mama was given a choice whether to continue with EBM or to switch to a special formula for anti reflux (AR). LM and GERD always co-exist, known facts, undeniable and proven true based on sharing by other malacia mommies around the world. Mama tahu in US they hv been using thickeners to thicken their infants feeds, so as to prevent milk fr coming up to the larynx n further cause irritation n inflammation, which would worsen the LM. But since sayang is now on tube fed, theres no way they can use thickeners for ur ebm, as that is meant for oral/bottle feeding.

It was not an easy decision sayang. Mama nangis masa buat keputusan depan dietician tadi..to give up ebm and put u on formula. Not only that i no longer can bf u, rezeki sayang utk ebm pun terpaksa diberentikan buat masa ni. I just hope im making the right decision, moga Allah tunjukkan jln yg terbaik buat mama.

We're still looking up for all the possibilities sayang...whether it was the reflux, or the infection, or inflammation..etc that is hindering u from fast recovery. The lung specialist was also talking bout possibilities of we taking u home together with the cpap/oxygen machine...means sayang kena terus rely on machine to assist u with the breathing. Sedihnya hati mama sayang...tuhan je yg tahu.

Hari2 yg dilalui semakin mencabar rasanya. As much as i wanted n determine to stay strong, any new developmnt n news from the doctors could easily shattered my strength. Duhai hati, tolonglah tabah...

Day 10 post op

Assalamualaikum...
Pertama sekali, mama Irfan nk ucapkn ribuan terima kasih pd semua kwn2 tersayang yg slalu bertnykan kabar irfan...dan mendoakan Irfan. Hanya Allah yg boleh membalas jasa kalian semua. Setiap kali mama bc msg kengkwn, air mata ni mesti mengalir. Untung mama dpt kwn2 yg caring mcm korng. Hugss!

Mama tahu ramai yg nk dtg tgk irfan dan nk kasi moral support pd mama...tp mama belum bersedia nk jumpa korng semua. Mama akan bertambah sedih bila mulut ni mula berbicara psl irfan. Walaupun setiap hari mama berazam utk taknak menangis, tp mama masih x mampu. Prof sendiri mmg kalau boleh taknak ramai visitors tgk irfan..sbb irfan belum stabil, keadaan dlm icu yg high risk of infections, ada ketika pelbagai test dan procedures dijlnkn ke atas irfan, etc. Harap kwn2 semua faham yer.

As of today, irfan masih dlm close monitoring. Ptg semlm distress teruk, nasal stent blocked due to massive secretions, so irfan now is back on machine to assist with his breathing. Doc pun asyik trial n error sbb mama tahu they are still searching for answers. Mama cuma mampu berdoa sayang...moga semua ni akan berakhir...moga hari2 yg mendtg akan lebih baik dr hari ini. Pagi ni lena irfan tidur...ubat tidur still on every 6 hourly. Feeding dikurangkn dr 70ml ke 45ml every 2 hourly to control reflux. Reflux meds being increased. Berat sayang dh jatuh jadi 3.5kg jer..mcm newborn plak.

Be strong yer sayang. sweet dreams.

Day 8 post op

Semlm merupakan antara hari yg paling sedih buat mama. Condition sayang makin teruk, HR consistently high above 200, semua doktor2 kat icu berkerumun di tepi sayang and mama was pushed aside. Mcm dlm drama, tp berlaku dpn mata mama..ke atas org yg mama sayang.

Prof buat scope lg skali tgh hari..redness, high possibility of infections, tissue flopping again, swelling subsided partly. Dan yg paling meruntun jiwa, possibility for a 2nd surgery for the 1st one may not be done enough. Cpap taken off, a stent was put thru ur nose to keep the airway open. Sedated every 6 hourly to reduce distess. Frequent suctioning still.

Sedihnya mama Allah je yg tahu. Mama nangis sepuasnya dekat surau..walaupun depan Prof mama dgr explanation dia dgn agak tenang.

Mama x pasti apa yg berlaku dan menanti pd hari2 yg mendtg. Mama cuma mampu berdoa dan merayu pd Allah moga sayang akan sembuh suatu hari nnt..we will keep praying for u sayang. pls stay strong yer.

Day 7 post op

Irfan's recovery progress has been stagnant, not getting worse n not getting better either. We just need to be patient n give him time. Today the ENT n ped tried to take off the cpap machine for a while but Irfan couldnt breath properly room air, hence back to cpap again but at a lower dose. No fever or any sign of infection alhamdulillah. At certain point of times he looked very calm n composed, but most of the times the RR and recessions are quite significant. Today Irfan tidur lena, being sedated 6 hourly to reduce the distress.

Ustazah Sue (ustazah abg idlan di Kafa) ada call mama tadi tanya pasal Irfan bila ternampak posting abah di fb. Biasalah mama bila buka suara bercerita psl Irfan mesti akan menangis. Irfan dan baby ustazah Sue sebaya tau..beza sehari jer. Ustazah akan minta anak2 kafa utk baca yasin dan doa selamat buat sayang. Abg idlan, firas dan ammar pun setiap mlm mesti solat hajat buat Irfan. Abg2 semua tak sabar nk Irfan blk rumah tau :) Mama pun rindu sgt nk peluk Irfan, breastfeed, dodoi irfan bila irfan nangis...aduhai lama dah mama tak dengar suara irfan menangis.

Dah seminggu mama jadi exclusively pumping mother. Setiap 3 jam mama akan pam susu irfan...tapi tgh mlm kdg2 mama terlajak gap sampai 4-5 jam iskk tido mati mama nih! huhu
Setiap pagi sebelum 830am mama akan sampai kat hospital. Keluar awal mcm nak pegi ofis, route pun sama cuma terlajak ke depan sket jer utk jumpa Irfan hehe.

Hari ni mama pecah rekod langsung x nangis kt hospital tau..god job mama! Bila tgk irfan tidur lena dan tenang je, hati mama pun rasa tenang :) Tapi time update blog ni..time drive blk tadi..mama tetap sob sob huhu..hati mama rasa luluh sgt bila terbyg wajah irfan.

Cepat baik yer sayang. Moga Allah sembuhkan sayang mama sepenuhnya amin ya rabb.

Day 6 post-op

Irfan is still not progressing well. despite frequent suctioning his secretions are still thick n in large amount. breathing assisted with bipap (high pressure o2). They will repeat culture test to check for infections. Deep recessions probably due to edema/swelling. Prof Anura asked me to be patient as recovery period for patients varies..maybe 1 wk..2 wks..or even more..which broke me into tears.

Be strong yer sayang. Mama harap mama cukup kuat nk menghadapi hari2 yg mendtg.  
Setiap kali mama teringat muka Irfan, air mata ni mesti mengalir..time mkn..time drive..time solat..time nk tido...time mandi...time pam susu...time update blog ni..time wassap dgn kwn dan family. Besarnya dugaan yg Allah beri kali nih.

Sembuhkanlah Irfan Faris kami Ya Allah...