46 Days In NICU (Neonatal Intensive Care Unit) PPUM 新生儿监护病房的46天

I think the greatest gift that is given to me and my wife is the opportunity to learn throughout the time  and start to appreciate the quality of life that we are having. A normal breathing action can be precious for someone else. Don't take life for granted.

我认为，我和妻子的最大得益是有机会不断地学习，并开始认真的珍惜我们所拥有的生活质量。一个正常的呼吸动作可能对于其他人而言是渴望的作息。不要把生命视为理所当然。

16/08/2020 11AM

I brought my wife with a wheelchair to NICU to meet our daughter in the early morning and she ask me a question that almost makes me cry again. My wife asked me: "Which one is actually our baby girl?", a mum that couldn't recognize her own child. This was also due to many babies were in NICU ward. She dropped tears when she met our baby face to face for the very first time, and I am very touched on that moment. During that time, baby was getting better where she turned pink and legs were that that stiff straight compared to last night.

由于血压高，我在清晨就去了诊所看病拿药，回到家后就立即打包了妻子和宝宝所需的东西，然后去了医院。我带着老婆坐着轮椅来到了新生儿监护病房，老婆问了我一个非常难忘的问题。她问我：“实际上哪个婴儿是我们的宝宝呢？”，可以想象一个认不出自己孩子妈妈的感受吗？这是由于在（NICU）病房中有很多婴儿。当她第一次见到我们的宝宝时，她流下了眼泪，那一刻让我十分感动。婴儿那时的状况有些进步，她皮肤变粉红，而且腿部的僵硬笔直比起昨晚更好些了。

Why NICU?

为什么在监护病房？

• Although baby is a term baby, however she had apnea issue right after delivered
• Hypertonia for hands and legs
• Noted to have jitteriness on both hands
• 尽管婴儿是足月婴儿，但是她出生后就出现了呼吸问题
• 手脚肌肉紧张（肌张力障碍）
• 双手时不时有抖动

Due to the reasons above, baby will need to admit to NICU in order to have intensive medical care and the facilities like ventilation, infant warmer and 24 hours saturation monitors. 

由于上述的原因，宝宝将需要接受监护病房（NICU）才能获得一些医疗器材列如：呼吸辅助器，婴儿取暖器床和24小时监护设施。

To have a better understanding on how NICU looks like:

Taken from https://sanginihospital.com/neonatal-icu-in-ahmedabad/ NICU in Ahmedabad

取自https://sanginihospital.com/neonatal-icu-in-ahmedabad/ 艾哈迈达巴德的新生儿监护病房

Life during baby admitted in NICU

17/08/2020

My wife was discharge from hospital on 17/8/2020 and went to "Right Choice Confinement Center" located in "Taman Maluri" for 28 days. Ever since then, I am traveling from house to confinement center then to hospital daily. 

我的老婆在2020年8月17日出院，去了“选对产后调养中心” 坐月子28天。从那时起，我每天都从家中到月子中心，然后到医院。

What father need to do during these 28 days?

爸爸在这28天内需要做什么呢？

• Meet doctors to follow up the diagnosis progress daily
• Arranging various of body check from different department
• Learn to tube feeding
• Send EBM (Expressed Breast Milk) to hospital daily
• 每天与医生见面以跟进诊断进度
• 安排不同部门的各种身体检查
• 学习管饲
• 每天将EBM（母乳）送到医院

Incident happen in NICU

Throughout these 46 days, there are many up and down where "That’s the way life is sometimes: you can fix things up, but you can’t make them all better". Although we are are lost and sad at the beginning as doctors and parents do not know the root cause, but as the day goes on we know that we need to stay strong to face the challenge together with Valencia.

在这46天中，有很多事情在起伏不定：“有时候就是这样：您可以修整东西，但不能使它们变得更好”。我们一开始感到很迷茫和难过，但随着时间的流逝，我们知道我们需要保持坚强，与我们的女儿一起面对挑战。

Unforgettable incident happen in NICU:

难忘的事件:

• MRI was unable to complete in the first time due to Valencia having apnea after sedation on 3/9/2020
• Valencia need to intubated in order to have 2nd time of MRI
• Witnessed Valencia having a serious apnea (face and body turned pale and greenish) after feeding
• Witnessed 2 of Valencia's neighbour (babies in NICU) passed away
• 由于Valencia在3/9/2020打了镇静后出现呼吸问题，因此第一次的MRI无法完成
• Valencia需要插管才能进行第二次MRI
• 目击Valencia喂食后出现严重的呼吸问题（脸和身体变苍白和发绿）
• 目击Valencia的两名邻居（NICU中的婴儿）离开人世

What is the progress and finding in NICU?

• Lung X-ray and ultrasound: Structure is normal and transmitted sounds occasionally, with good breath sound
• Brain ultrasound: no symptoms of abnormal brain development
• MRI result: structure of brain is normal without any abnormal symptoms
• (EEG) electroencephalogram: Normal brain  and muscle activities
• Lumbar puncture: Spinal fluid tested without any virus or abnormal development
• Leg ultrasound: Structure is normal
• Focused Exome Sequencing test (Focus genetic DNA test based on stiff baby symptoms) - Result is normal (without any abnormal genetic that cause these issue)
• 肺部X-ray和超声检查：结构正常，肺部发出良好的呼吸音
• 脑部超声检查：无异常脑发育的症状
• MRI检查结果：脑部结构正常，无任何异常症状
• （EEG）脑电图：正常的大脑和肌肉神经活动
• 腰椎穿刺：经测试脊液无任何病毒或异常发育
• 腿部超声检查：结构正常
• 重点外显子组测序测试（基于僵硬婴儿症状的重点遗传DNA测试）-结果正常（没有引起这些问题的异常遗传基因）

Charges of  PPUM NICU:

PPUM NICU的费用：

• For Citizen of Malaysia (RM210 per day inclusive of diapers, doctor consultation & medicine)
• For  Non Citizen of Malaysia (RM300 per day inclusive of diapers, doctor consultation & medicine )
• The charges are not inclusive of: device that need to use for diagnosing, baby incubator usage, breathing support machine (device will be charge on rental basis per day)
• 马来西亚公民（每天RM210，包括尿布，医生咨询和药物）
• 非马来西亚公民（每天RM300，包括尿布，医生咨询和药物）
• 费用不包括：用于诊断的设备，婴儿保育箱的使用，呼吸辅助机（设备将按每天使用租金收费）

To have a better understanding of the diagnosis process:

(Taken from internet)

为了更好地理解测试：

（取自互联网）

Lung X-ray

肺部X-ray

Brain ultrasound

脑部超声检查

MRI

(EEG) electroencephalogram

（EEG）脑电图

Lumbar puncture

腰椎穿刺

Focused Exome Sequencing test

重点外显子组测序测试

To Be Continued

Jeremy