Samantha's Diary

Samantha’s vomiting has reduced tremendously thanks to the doctors’ help. The doctor has narrowed down the cause to her existing condition, which is high level of lactic acid in her blood. Normal human will have acid level of 2, while Samantha has level 11. According to doctor, this is common with Mitochondrial disorder patients and could be controlled via Sodium Bicarbonate.

As Jonathan had serious vomiting before and was diagnosed with Pyloric Stenosis, Samantha had higher risk of having it. They did an ultrasound on her abdomen again for Pyloric Stenosis. The scan came back negative and it also confirmed that there are no obstruction to her digestive systems, which also rules out GERD.

There is however a clearer picture of what we might face with Samantha in the future, but this may change as she grows. Through the MRI, the doctor informed that there are damages to the brain part which controls her motor skills. Her legs and arms movement may be affected. There is also some part of the brain damages which affects her learning skills. There is also visible larger than normal water volume in her brain.

The good news is, Samantha don’t have to undergo any surgery for now. The Hydrocephalus which was said could be threatening her life turns out to be her skull closure were slow due to her existing illness. It will close over time.

Another findings was her left kidney is no where to be found via the ultrasound. Doctor is to perform additional test to check whether was it because she was born with only one kidney or the kidney was damaged during her first incident. If the kidney was destroyed during first incident, and it is left in the body, it could be toxic and need to be removed via surgery.

Samantha is scheduled to discharge either this Friday or Saturday, and at most on Monday.

The last feed that went in without being vomited was approximately 36 hours ago. Sam has lost weight and is showing further signs of dehydration. We’ve consulted the doctor and he has asked to admit Sam tomorrow morning. We’ll be sending her to PCMC as Dr. Choy will be available there in the morning.

We’re hoping that this time, the doctor will be able to find what is and prescribe the proper medication. May God continue to guide each of us on what to do and continue to heal her.

Little one, how well you sleep,
Peace hugs us as we gaze at you,
Your occasional smiles lightens us,
As we know God walks with you.

Little one, the healing is in progress,
Take heed that we’re here for you,
A little bitter sweet the medicine maybe,
It is for you to grow strong and mighty.

Little one, keeps fighting on,
No other joy is greater than to see you grow,
Let not your body be your limit,
Let your will be the driver of your life.

Little one, mummy and daddy will always be here,
Keeping you comfortable at all time,
These hands will do whatever it takes to keep you going,
In God we have faith that He will carry you through.

Little one, be strong and get well soon.

A poem for our Little one,
Mummy and Daddy
3 June 2010

We brought Sam to doctor today and he checked her. Samantha was sent for brain and abdomen ultrasound. Her urine sample were taken again for another lab test.

The results from the ultrasound came back with negative for Plyloric Stenosis, the problem which Sam’s brother had when he was 3 weeks old. Doctor also has ruled out UTI as the urine sample taken did not contain any signs of infection. However, the ultrasound on the brain shows that there is sign of water in it. This would need further MRI on the brain for clearer picture. According to the doctor, this was present during the first week when she was in PCMC.

Now, the cause of the vomiting is still not found. We would need to observe her condition for the next 2 days. During this time, complete hygiene is to be practiced so that viral infection could be ruled out too. If the vomiting still continue for these 2 days, she will be admitted into hospital and get thorough examination.

As for Samantha, she is slightly active compare to yesterday. We could still see from her eye that she is tired too. bWe’re hoping it is just a reflux and could go away after few days.

God, please guide us to find the cause for the vomiting.

These 2 days, Samantha has been vomiting and shows signs of fatigue.

She would at times woke up from sleep and vomit. At times several minutes after feeding. We’ve contacted the doctor for advice and he informed that there were no UTI as per my previous update, but the white blood cells has shown abnormal counts. We’re to bring Samantha back to hospital on Monday for him to check and get some antibiotics. Gosh.. Additional medicine again.

Dr. Choy called me up yesterday and informed me that the urine test came out positive of infection. He requested for another test to be performed for confirmation.

This morning, darling and I tried to gather the urine. Samantha is so gentle, she only gave out little urine. We waited for a whole 1 hour just to gather 10ml. I took half day off from work today to go to SDMC to pass the urine samples to the nurse and then the lab for testing. Doc says the result will most probably be ready by Friday.

Hopefully we’ll know the reason why she cries in pain each time she wanted to pass motion or urine.

Samantha was brought for checkup last Saturday, 15 May 2010. Doctor was satisfied with Samantha’s growth progress and mention that many normal signs are showing. Her active activities such as crying, constant observations of her surroundings, movements, cravings and such are signs that her brain is also developing well. Her weight gain @3.05KG provided the extra signs that nutrients are being absorb well by her body. God’s healing is indeed in progress.

We’re still concern of her constant passing of motions, but doctor reaffirms us that it is due to breast milk intake. He adviced that we could rotate feeding with special formula milk. The current formula milk he recommended is Neocade.

This time, the doctor has taken her urine to perform several tests and the result will only be known in the next visit, which is scheduled 19 June 2010.

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. Read the rest of this entry »