Being the Mom of a Preemie... How's it like?

Introduction
One of the commonest questions I get from my friends nowadays is "how's your son?".  And it suddenly made me realize that unlike most mothers who share a lot about their children, I seldom do so. 

Thanks to the dedicated pediatric team at Hospital Ampang, and thank God for the miracle, I'm grateful that Alvin is generally growing and learning like other babies.

However, I shall be glad to share this journey of being a mom to a premature baby here.

Expect many differences
Compared to healthy full-term babies who get to go home together with mommy upon her discharge post-natal, babies who are very preterm don't.  They have to live in "the NICU that never sleeps" for a significant amount of time until they are at least 1.7-1.8 kg or when they are well enough to discharge.  Therefore, if a prem baby seems very unadjusted and "stubborn" compared to a full-term counterpart when they first go home, the differences endured during his/her early days, and immature brain, may have a connexion.

How does NICU look like?
As photography is not allowed at the NICU in Hospital Ampang, I abided by the rule.

Briefly, it's very noisy with the sounds of ventilators and various alarms.  It's brightly-lit 24 hours a day.

In Hospital Ampang, only parents of patients are allowed into the NICU.  Grandparents aren't allowed, with the exception of critical cases with the permission of the pediatrician in-charge.

Of course I do not know the reason for that, but I personally think it's a good idea (why?  I'll explain in a while...).

I know about the general functions of each device attached to a premature baby in the NICU, yet I dread going there each day because I was afraid of seeing deterioration instead of improvement.  It's only until my child's completely off from CPAP that my confidence began to grow.  Even then, I was still worried about other things like hospital-acquired infection, the risks of ROP and hearing problem, PDA, and a host of other dangers that a preterm baby faces. 

The image above from Mayo is a simple and precise illustration of the gadgets used on a very preterm baby in the NICU.  Scary, isn't it?

In the event where grandparents are allowed into the NICU, perhaps many will burst into tears.  Especially among those who have seen their elderly friends who're ill and battling for life in the hospital with various life support and monitoring devices attached to the latter.  And when they see their grandchildren on similar setup, it will not be surprising for grandparents to end up thinking "will my grandchild make it?".    

Various follow-up appointments to keep
In comparison to full-term babies, premature babies are known to face higher risks for quite a number of conditions.  As a result, it's crucial for there to be continuous monitoring and check-ups to make sure that everything is OK and for early interventions to be initiated if any anomaly is detected.

After all, premature babies are born before they are supposed to, and thus their bodies may not be fully-prepared to cope with life outside the womb.

Let us know divulge into some of the things that we check for, post-discharge from NICU and ward 4A (ordinary neonatal ward).  Being a layperson who shares for the sake of sharing, please bear with my usage of possibly crude-sounding words (my apologies...).

ROP Check
ROP stands for Retinopathy of Prematurity (please click to view the factsheet of ROP). 

The check was conducted for a few times over a period of 3 months.  Eye drops are administered to dilate the pupils, the eye is wide-opened using a special device (like the one used to keep the wide-eye opened during eye surgery), and a bright light is "flashed" into the eye to check if any abnormal blood vessel is present.

Anyway, the panic button shouldn't be on outright... firstly because not every premature baby has ROP, and secondly, if there is ROP but detected early, treatment can be initiated a.s.a.p.

Having gone through 3 tests, I am relieved that my kid is free from ROP.  But there will be an appointment in a year after the last test, this time to test for visual acuity just to make sure that everything is 100% okay. 

Hearing Assessment for Preterm Babies - the BAER test
Premature babies have higher risks in terms of facing problems with their ears and hearing.  And thus, an appointment with the audiologist needs to be scheduled.

The audiologist will check the eardrums, and then proceed to do a full hearing assessment.  During the test, the baby is orally-sedated. This is one test which you'll see the usage of headphone with colourful wires adhered to the forehead. 

Pediatric Check-up
Appointments at the Pediatric Clinic are scheduled once quarterly or once in 3 months for the purpose of monitoring growth, development milestones and the general health of the baby.

The development of premature babies is tracked based on their corrected age (i.e. age based on EDD) as opposed to the conventional age.

Speaking of corrected age, I find myself frequently reminding folks around me that they should measure Alvin as if he's born in August, not May.  This is because I often hear "at this age, his so-and-so is already drinking 6 oz of milk", and "at this age, his so-and-so is already eating this-and-that".

The advice for extra vaccination
During the first pediatric check-up, pediatrician at Hospital Ampang, Dr Rahimah had recommended that my child gets the PCV (pneumococcal conjugate vaccination).  As PCV is currently not in the list of compulsory vaccination in our country, we're advised to seek the vaccination in a private clinic.

I do not know which clinic offers the best deal, but I take convenience into consideration and had decided to seek it from a private pediatrician's clinic (Dr Chia) near where I live.  The Prevenar 13 is to be administered in 3 doses during infancy, and 1 dose at 18 months of age. 

Different Feeding Pattern

When my child was first discharged, he's only 1.78 kg and one can imagine how his appetite is.  We started off with about 30 ml of milk per every 2 hours, and now it's approx. 100 ml per every 3 hours.

100 ml is a small portion, but then what's most important is that as long as growth rate is proportionate to the corrected age, then I shouldn't worry much.

At first, I saw that folks were quite surprised to see this strange feeding pattern which is very different from full-term babies.  Of course, since both children of my parents-in-law are full-term babies weighing well beyond 3 kg at birth, they're already consuming 4oz per feed (120 ml) right from very young.

When to Start Solids?
At 3 1/2 months corrected age (6 months conventional age), there were two occasions when people, including nurses asked me why have I not started solid food on my child. 

Taking my parents' experience with me into account, my parents started me with solid food when I was about 6 months old (corrected age: 5 months old).  Although I was able to swallow my food and did not vomit, I became extremely constipated that enema became an essential tool on a daily basis.  Only upon attaining a more matured digestion that I began to be no longer dependent on the enema as an infant.

I do not want my child to go through my nightmare (as if I remember anything from 6 months old when I don't, hahaha...), so I shall stick to the plan to start semi-solid food at 6 months corrected age rather than now.  I have a feeling that he may be the same as me in this regard, so do trust a mother's instinct and don't fall for pressure from others!

"Do you bring your baby out?"
Besides the above, I have also been frequently asked if I ever take my baby out to public places because I hardly tell anyone of me going anywhere with my child, be it verbally or via the Net such as social network and blog.

Yes, I do.  But to somewhere that's not too crowded until he's at least 2.

"Why doesn't he nap longer?"
This is a question I frequently receive from the present caretakers of my babies i.e. my parents-in-law.

I'm not an expert in babies, but from what I have gathered, some premature babies have sleeping pattern that differs from full-term babies.  Those under this category sleep longer hours, but shorter intervals.

Such phenomena stems from the reason that premature babies tend to have brains less matured than their full-term counterparts.  When "state control" is still lacking, this is when some preemies find difficulties falling asleep despite being tired, and more easily upset by over-stimulation.

People like to say "sleep like a baby" to describe a person who sleeps soundly.  But contrary to that, I'm quite afraid of my baby sleeping too soundly.  To sleep well is okay, but please don't get too sound.

SIDS is one of the things that I'm a little scared of.  If you talk about the risks, I guess I see them all the time.  Low birth weight, being male, not breastfeeding, and sleeping tummy down.  Although I always put my child to sleep on his back, 99% of the time, he'll flip over soon after I put him down.  I'd repeatedly turn him onto his back, and he'd flip again.

In the end, I had to settle with the notion that it's okay to sleep tummy down provided there's nothing to obstruct the nose, and that I'll check on him frequently at night.  At times, I become paranoid and end up rousing him sometimes if I think he sleeps too soundly for more than 5 hours (call me silly and cruel for disturbing a sleeping child!).   

Hernia
Premature babies, especially boys, are known to be at greater risk of having inguinal hernia.

Speaking of Government hospitals in the Klang Valley, only the Pediatric Institute of HKL has pediatric surgeons.  Generally, babies with hernia from Government Hospitals are put into a waiting list until they're 2 years old before they get operated on, except for emergency cases e.g. if the hernia is incarcerated
Additional note: We first went to the surgical clinic of Hospital Ampang as advised by the Dr at KKIA, together with our referral letter.  Dr at the surgical clinic of Hosp Ampang examined Alvin and confirmed he had inguinal as well as umbilical hernia.  We were advised to return for a follow-up in 3 months' time, and dr at the surgical clinic had informed us that Alvin will be referred to Institut Pediatrik HKL when he turns 2.  

Thanks to a commenter to this post who is paed surgeon at a Govt hospital for his/her clarification (at the comment column), and for the benefit of whoever happen to face similar issue with their infants: Accordingly, Govt paed surgeons will take in your case as soon as they receive it - without any postponement.  That being the case, thus I think it's better to go directly to HKL (or the General Hospital of your home state) with the referral letter because that would have saved the hassle and risk of waiting for 2 years to be referred for another time i.e. KKIA --> Hosp Ampang (for e.g.) --> HKL... 

Considering that my child's caretakers get very anxious about him whenever he cries, and considering that I will likely not be able to detect an incarcerated hernia (if it happens) with my untrained hands, I thought that rather than to wait for 2 years, it's best to get it repaired quickly, privately if the budget from my humble savings permits. 

Hernia repair is a minor surgery.  Ours took about half an hour, done in September 2012 at Sime Darby Medical Centre Subang Jaya (popularly called SJMC) by pediatric surgeon Dr Ahmad Zulkiflee. Forcing a baby to "fast" for 6 hours pre-op was a nightmare indeed (note: breastfed babies fast for 4 hours, FM-fed babies fast for 6 hours).  Thankfully, recovery was smooth and speedy,  Alvin appeared comfortable and didn't require analgesics.

Conclusion
In short, I'm grateful that everything had gone beyond my expectation so far.  Thanks to the good people at Hospital Ampang, and thank you my dear family members and friends for your kind prayers and words of encouragement.  

There's only one more thing left to be seen now... arghhhhh, I'm still stressed.  Anyway, I shall update more later on.