Samantha's Diary

Baby Samantha is 3 weeks old today.  I am still learning in taking care of her who requires more tender loving care.  Still working out the best schedule for her which includes her milk time, vitamins time and massage time.

I am practising the art of infant massage by using Johnson & Johnson’s guide on “The Importance of Touch…”.  The schedule would be at least one time a day but preferably 2 times a day.  Massaging fragile little Samantha is like breaking her bones.

Getting Samantha to swallow her vitamins is a great challenge and can be quite stressful. In a day, she needs to take 6 vitamins.

1. Riboflavin, also known as vitamin B2 (liquid – mixture of powder and syrup)
2. Biotin, also known as B complex (tablet – crush into powder form)
3. Vitamin B1 (tablet – crush into powder form)
4. Folic Acid (tablet – crush into powder form)
5. Co-enzyme q10 (soft-gel capsule – squeeze out the oil-soluble)
6. Vitamin E (soft-gel capsule – squeeze out the oil-soluble)

She was also given Polycose (powder to mix with water/EBM) 3-hourly to help her get the calories she needs for growth.

As it is quite taxing for her to take all vitamins at once, I separate them into 3 portions.  I need to establish a routine for her vitamins intake too.  All the vitamins are so awful you can see from Samantha’s reaction when the mixture reaches her tongue. Some smells awful. My poor baby…

Samantha went for her first follow-up after she was discharged. It seems that she had not gained any weight since she discharged. Because of that, doctor advised to give her EBM instead of direct BF. This is to ensure that she gets the right amount of milk which is for now, 1.5oz every 3 hours. But Samantha tend to fall asleep after taking only 1oz or less. No matter how you agitate her, she won’t suck.

She’s like an owl. During day time, she can sleep for 3 – 4 hours without crying for milk. At night, she cries every hour and using my nipple as her pacifier. BF her is a challenge too. When I started breastfeeding her, it was so difficult to latch her on my breast.  As she is smallish, she’s not willing to open her mouth wide unless when she cries out loud.

My other problem is the bottle teat. I think she prefers small and soft teat with slow flow. Any recommendations?

Doctors finally allowed Samantha girl to go home on Monday, after 10 days being in Neonatal ICU. Thank you for all the prayers and concern for Samantha.  And as I am writing this post, my little girl is sleeping peacefully. Praise the Lord!

After what Samantha’s had gone through, the doctor (a geneticist) diagnosed her with Inborn Error of Metabolism (IEM) in which she had Mitochondrial Disease. However further tests will be performed as she grows, to confirm this diagnosis. Right now, she has to be on long term vitamins to give her energy.

Here’s Baby Samantha’s miraculous story……

She was delivered via C-sect due to a breech position and weighing at 2.03kg. Apgar score was good and she looks like a normal healthy baby. Initially she was sucking well from the bottle but later towards the evening, pediatrician informed us that she was shivering and so she will be put in the incubator for the time being.

In the evening of the second day, she looks lethargic and was breathing rapidly with a pulse rate of 180+. Pediatrician stopped her feeding and put her on IV drip via her belly button in order for her to rest so to see if her condition will improve the next day. (more…)