My Hero is turning 6 months!(corrected age 2 months plus)

Alhamdulillah. Genap 6 bulan Muhammad melihat dunia. Siapa sangka akan sepanjang itu usia Muhammad?  Teringat entry saya perihal miracle Allah suatu ketika dahulu ... Alhamdulillah, Allah telah pun menunjukkan kekuasaanNya. Kini telah hampir 2 bulan di rumah.

Semalam pergi appointment Muhammad. Berat dah naik 3.6kg...Paediatrician Muhammad pun dah perasan Muhammad dah chubby dah putih. Masa lahir hari tu gelap sikit, biasa untuk budak2 pramatang....kulit pun tak sempat nak matang lagi.

Ayahnya dah ambik cuti 2hari untuk appointment ni...sebab nya sehari sebelum tu, appointment untuk cleft palate dia. Haihh... dah jadi patient (mak ayah patient ) baru lah rasa susah payahnya pesakit nak datang appointment, especially kalau appointment yang banyak cam gini. 2 minggu lagi, kena datang lagi. Nak kena tinggal keje lagi ayahnya... nasib baik saya cuti lagi, takde la asyik rasa bersalah tinggal kerja..

Ah...Muhammad sudah menjadi sangat comel...nangis malam pun tak mengapa. Ayah Muhammad pun, penat2 postcall pun masih sudi bangun malam melayan Muhammad yang gelisah tak tidur. Tapi sebenarnya, sekali sekala saja Muhammad meragam malam. Banyak nya menangis hanya bila lapar..maksud 'bila lapar' ialah masa menyusu dia lah, 3 jam sekali. Sekarang dah tak muntah lagi, berani lah sikit nak naikkan feeding susu dia jadi 60ml 3 jam sekali. Pukul 12mlm, 3pagi , 6pagi...kenalah bangun, panaskan susu perahan.

 Sekarang Muhammad dah pandai sikit sucking, lepas belajar dengan Rehab-therapist untuk buat oro-motor therapy. Alhamdulillah..senang sikit kerja time dia ngamuk2 lapar dan tak sempat2 nak susu tu. Maklumlah, guna Ryles tube tu, bukan terus masuk 60 ml sekali gus. Lagipun dengan oxygen di hidung tu buat dia rasa kering tekak agaknya (ala2 duduk dalam aircond 24jam, camana rasanya..tak ke kering tekak?), so, sementara bagi ikut Ryle tube tu, boleh la sekarang pujuk2 dia dengan breastfeeding. Kalau tidak sebelumni, naluri keibuan tu tersentuh jugak, tengok baby meraung2, tapi tak boleh nak buat apa sebab tak boleh nak menghisap susu. Tunggu aje habis bagi ikut Ryles tube tu. Kadang2 nak basahkan tekak dia, bagi sikit guna syringe/picagari. Dulu, masa awal2 dalam wad dulu, time sua2 breastfeeding tu, Muhammad pandai sucking, tapi lepas pakar suggest jangan bagi lagi, sampailah time dia discharge, memang saya tak berani nak breast feeding dia. Sampaikan dia sendiri dah lupa cara nak suck. Bila masukkan jari ke dalam mulut pun dia tak tahu nak hisap jugak. Gigit adalah. Sedih jugak. Tapi lepas discharge, saya cuba ajar2 balik dia breastfeeding. Memang serba salah mula2 tu sebab Plastic/ENT kata boleh, tapi tak berani sebab lungs condition dia. Neonate pulak ikut plastic/ENT dan tak berapa nak allow breastfeeding. Akhirnya lepas jumpa paeds respiratory team, dia kata ok je breastfeeding, baru la saya confident sikit untuk breastfeeding. Lagi pula lepas dia tukar Ryles tube buh ikut hidung bukan ikut mulut, baru lah muhammad dapat belajar bukak mulut. Kalau tak, asyik duk hisap tiub yang lalu atas lidah dia tu je.

Kaki dia yang masa discharge tu mengeras dan kurang bergerak, Alhamdulillah selepas buat physiotherapy sendiri di rumah (sebab susah nak pergi hospital dengan oxygen dan juga nak elakkan tempat crowded di klinik untuk kurangkan risiko jangkitan) kini dah aktif, dan kuat menendang. 

Sekarang, saya rasa confident dan positif yang Muhammad akan sembuh sepenuhnya, insyaAllah. Doa tak henti2 juga.. muga Allah perkenankan doa ini.

Alhamdulillah ya Allah. Terima kasih atas kurniaanMu... NikmatMu sangat banyak sekali... tidak terkira.

No. The story is not over Yet..

Alhamdulillah, it's nearly 3 weeks Muhammad at home. His weight now acheive 3.2kg, a normal weight of a newborn. With his head lag, soft neck and all, make me feel like just giving birth to him, just that I don't have to 'berpantang'.

In one part, i'm so glad, alhamdulillah for having him now on my arms. I'm not dreaming now.... the nightmare is now over. I have my own baby in front of my face, AT HOME. No more back and forth journey to the NICU..living half of my family at home.

But in another side... the story is not end yet. Muhammad came home with common complications for premature baby that is Chronic Lung Disease which required oxygen support -which we all dont have idea for how long and GERD (reflux disease)- although for adult, it's not a serious disease, but with a premature with cleft palate that have weak breathing effort, it's just a horror thing to see him vomit nearly each after feeding, and those vomitus came out of his mouth and nose and he gasping for air. Sometime, he became cyanosed for a while as the oxygen flow was blocked by the vomitus around the nasal and throat area. It's really different when the patient is our relatives, and I tell you, you will be panicking most when it's your own child, like you are not a doctor. Luckily, we are still able to think during the emergency.

The oxygen concentrator is another thing. It's connected to electrical supply 24 hours, 7 days perweek. Really, it's difficult to go anywhere (such as send and fetch my eldest daughter to school, or going to market and left Muhammad with my great grandma) without worrying if it'll blackout. Alhamdulillah, before my parents went for Hajj last 2 weeks, my hubby already bought a generator, after we experienced a blackout incident for 5 minute, and there was no oxygen tank stand by. It really worth buying, as I already used it for nearly 4 hours straight. Oxygen tank that we have (small one) will not adequate for that long duration

Besides being a milk-factory for him at home (I need to continue breastpumping  home 4 hourly to maintain the milk production as Muhammad unable to do direct breastfeeding due to his lungs conditions combined with cleft palate), the 3-hourly feeding and medication times make me busy. After some times (nearly 3 weeks), it's became a routine and I feel less burden. But, my half-paid-leave is nearly come to an end this October. I'm wondering if my mother able to take care of her schedule and act right during the emergency.

Still doing Istikharah if I need to continue with my unpaid leave.

Mimicking our story..

Akhirnya Muhammad Pulang..

Alhamdulillah... syukur, selepas berulang alik ke hospital selama hampir (lagi 3 hari ) 5 bulan (corrected age 1 month 2 weeks), akhirnya Muhammad dibenarkan pulang, dengan berat 2.83kg..!

Pulangnya masih berisiko... still on oxygen... kenalah menyewa oxygen concentrator RM300 sebulan (Buy Price RM4500) dan sediakan oxygen tank kot2 tak de eletrik (oxygen concentrator tu guna elektrik)

Now Muhammad already 2 weeks at home.. alhamdulillah. He's gaining weight (2.95kg after 1st week) and learn a lot at home. He need only 3 days for his eyes learned to focus on object, and 1 week before he learned to smile. So cute.

Walaupun masih berasa gusar dan khuatir setiap kali dia menangis hingga biru  (cyanosed), atau apabila sedara mara datang melawat beramai2, atau bila kakaknya ada batuk selsema.. Alhamdulillah, Muhammad masih kuat dengan minum susu ibu..dengan izin Allah, tanpa ada jangkitan yang serius. Alhamdulillah.

Salam Aidilfitri 1433H

Muhammad is gaining weight well.. from 2.29kg to 2.35kg then 2.57kg and the last saturday (which was 3 days ago) 2.66kg. Almost 5 months.Still in NICU. Still on Ryles' Tube feeding.

Ura2nya dah planned untuk going home..but with oxygen. Terasa sayu juga di hati... tapi bila tengok baby Aliff di sebelah katilnya, umur dah setahun baru bagi balik, dan motor development dan speech nya agak slow, rasanya baik lah Muhammad berada di rumah. At least ada jugak orang nak mengagah dan main2 ngan Muhammad... baru lah speech dan motor development nya teransang.

Cuma yang agak terasa adalah perihal kewangan. Disebabkan saya masih lagi bercuti , sejak Januari lagi (bermula seawal kandungan- cuti tanpa gaji, kemudian cuti bersalin dan sekarang cuti separuh gaji menjaga anak) agak terasa juga apabila perlu keluarkan wang untuk bayaran ubat Palimizumab (anti-RSV viral) yang berharga RM3500 (mahalnya!) sekali cucuk (1 vial) - 3-4 dos diperlukan (kira la jumlahnya! nasib baik boleh claim dengan goverment) dan perlu sewa tong oxygen (oxygen concentrator) berharga RM350 sebulan apabila balik nanti, terasa la jugak.

Terpikir juga, kami pun terasa terbeban, apatah lagi orang2 yang berpendapatan kecil...hmm... Mungkin tak jadi lah nak sambung unpaid leave untuk bersama Muhammad lagi. Mungkin juga perlu pikir10 kali untuk quit kot..hehe

Hari2 terakhir Ramadhan...

It's already 4 months Muhammad in NICu. I almost lost grip, tired, lost courage, and need distraction to keep moving.(itu yang mengarut sampai nak bukak bisnes bagai, siap beli satu apartment tanpa berfikir panjang..haihh..)

Di saat terasa kelelahan dan tekanan, Allah memberi khabar gembira yang meniup kembali semangat ini. Berat Muhammad kembali bergerak 2.29kg semalam daripada 2.15kg last week. Setelah menggunakan ubat Sildenafil, alhamdulillah dengan izin Allah tekanan di peparunya menurun, membolehkan oxygen dari badannya sendiri masuk ke peparu tanpa bantuan luar. Jadi, sejak semalam, paeds team try nak off oxygen step by step... 1 hour then 2 hour every nurse-shift. Harap2 tak lama lagi boleh off oxygen.

Ya Allah, kuatkan semangat ini untuk mengejar Lailatul Qadar..

Di saat terasa beratnya ujian ini, ku berpaling ke kanan dan kekiri katil Muhammad, melihat yang lebih teruk lagi ujiannya. Alhamdulillah, anggota badan Muhammad semuanya lengkap dan normal. Alhamdulillah, walaupun Muhammad ada masalah jantung, tidaklah sampai ke tahap perlukan pembedahan. Alhamdulillah.. alhamdulillah.

Ku terkenang kembali saat membelek2 kalimah2 suci Quran, akan kisah Maryam yang membawa perutnya yang sarat..bayi tanpa ayah. Dicemuh dan dicerca, sekalipun dirinya tak bersalah..hingga dia juga hampir terasa ingin mati, tapi dipujuk oleh malaikat. Kisah Nabi Yusuf, sekalipun diagung2kan kisah wajah rupawannya, namun disebalik itu, dia punya ujian yang berat sewaktu kecilnya.. dibuang oleh saudara sendiri, difitnah dan dipenjara...

Atau kisah Siti Hajar yang ditinggal oleh suami  di padang pasir bersama bayinya yang kecil tanpa setitis air. Yang ada hanya pengharapan, bukan kemarahan... moga aku tabah dan sabar seperti itu.

                                    

                                   

 
  
Ku terfikir adakah ujian ini menguatkan iman aku atau melemahkannya... Ya Allah, aku pohon yang pertama itu...

13 Ramadhan = Muhammad's Day 115 of life

He's cuter, weighed 2.1kg. Now he knows how to protest and cry when he's hungry, when he's cold or when he want his ummu to cuddle him.

He really craving for sucking but what he only can do now is just sucking his Ryle's tube or a 5ml syringe filled wil 2ml milk, given slowly. Poor him. Feeding increased up to 40 ml 3 hourly. Wow!...few days ago it's just 32ml 3 hourly. Hmm...hopefully he'll gain weight faster.

Although I really want to breastfeed him, I have to wait another 6 or 9 months after his cleft been repaired. So, even though it's a hard decision, I've ordered Medela Haberman feeder/bottle special for cleft palate for him so that he can no more use Ryle's tube for feeding. Using syringe is really pitiful for him and difficult to control the flow when it's pushing an a large amount of milk. So, hopefully the Haberman may not affect breastfeeding later.

Yesterday,  an echo was done because the paeds team was wondering why Muhammad suddenly dependant on oxygen since several days ago. His oxygen saturation will go down to 68-70%, but it occured not all the time. So they found pulmonary hypertension like before..but they said it's not severe. The pressure is only 40mmHg. The medication for that called Sildenafil (yes, the same used for viagra) was restarted (was started before and was off because his condition improving)