Julie

Samantha is Back Home

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After spending 6 days in NICU, finally Samantha got the green light from the doctor to be discharged last Saturday. She looks chubby and rosier upon discharged because of the IV drips.  Hope she continues to be chubby and have rosy cheeks like Mommy.  Not only she managed to gain back the weight she lost but it increases a little to. She is now 3.2kg. She was 2.97kg upon admission. 

So what is the cause of her vomiting?  Like I mentioned in my earlier post, X-ray taken, ultrasound was done, MRI brain was done, blood and urine samples taken for tests.  Everything seems to be ok.  So the doctor concluded that her vomiting is due to her Mitochondrial Disorder.  People with Mitochondrial Disorder may have episodes of vomiting and migraine.  If this is the case, Samantha’s vomiting may relapse.  Nothing can be done to cure her vomiting. She may still vomit once a while but as long as she is not dehydrated or losing weight.  If the same vomiting relapses, the only thing that can make her better is the IV drips.  We hope there won’t be frequent visits/admission to the hospital.  All these while, her liver and kidney is not very good too. Do continue to uphold her in your prayer that she won’t have further illnesses.

Doctor adviced that due to Samantha’s special condition, she will need extra tender loving care at home. That would mean we are to not allow her to cry excessively, must pamper her, make her as comfortable as possible.  We suspected that her vomiting was also because she dislike taking some of the vitamins.  Because of this, doctor has reduces some of her vitamins temporarily so to not stress her too much.

Thank you all for your prayers.

Samantha is Admitted

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Since my last post about Samantha’s vomiting spell, her condition worsen where typically no food can stay in her stomach. She got thinner and lethargic. We brought her for a review yesterday and was prepared to get her admitted.  Good thing she vomited in front of the pediatrician and he could see how forceful is her vomiting. He straight away advise her to be admitted and to put on drips as she was also dehydrated. Once she is on drips, she looks better. Her skin colour improves and she doesn’t look so lethargic anymore.

However, doc still couldn’t find out what causes the vomiting. There are few causes that he is suspecting.

Pyloric Stenosis

As Jonathan had it before, Samantha had higher risk of having Pyloric Stenosis. 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.

Hydrocephalus (Water in Brain)

In my earlier post, I mentioned that doctor found water in her brain from an ultrasound.  It’s a condition called hydrocephalus. This can cause vomiting as well.  To confirm this, doc advised for a detailed MRI scan. The report came back negative. Basically, she does not have hydrocephalus. However the MRI report tells us something else which I will share later.

So the doc has ruled out the above two conditions. He almost come to a conclusion that her vomiting could be due to her acid level. Remember she was suffering from severe acidosis at birth which later confirms that she had mitochondrial disorder.  People with mitochondrial disorder may have episodes of vomiting, migraine and etc.  They took her blood and urine to test on possible infection also. Doc is now trying out medication and ways to prevent her from vomiting.

Samantha’s Vomiting Spell

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Since last Thursday night, Samantha has been vomiting almost after each feeding.  It normally happens 30 mins – 1 hour after feed. It is not normal spitting of milk but forceful vomit. We afraid it may be Pyloric Stenosis as what Jonathan had when he was 3 weeks old. On Monday, we brought Samantha to the paediatrician and he did an ultrasound.  The result came back negative for Pyloric Stenosis.  If then, what could be wrong with her?

Could it be reflux? I started giving her AR (anti-regurgitation) formula on Wednesday. I have also reduced the amount of milk from 2 oz to 1 oz. I calculated yesterday, out of 10 feedings in 24 hours, she vomited 5 times. I hope it’s reflux or just some temporary stomach discomfort.  Better not be any kind of those rare illnesses again. Still monitoring her condition and hope she will get better. She gained 150g two weeks ago and because of this, she looses it. She is only 3kg now at 2 months.

Another not so good news. Apparently her severe acidosis did affect her brain. Doctor found water in brain (hydrocephalus) when he did a head ultrasound. Need MRI scan for futher examination.  This hits us badly. It’s so scary when you read about this medical condition. Praying hard that this can be fixed and she doesn’t have to go through any major operations.

May the Lord place His healing hands on Samantha and heal every part of her body that are not well.

Something on Jonathan

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My 2.5 years old boy is growing up! I am unable to catch up. Do you know what I mean?

He begged me to carry him in the shopping mall yesterday.  Oh dear, he is so much heavier than he was the last time I carried him 9 months ago. He is now 15kg.

His vocab has improved a lot. That makes our conversation more understandable and enjoyable. Now, he is able more willing to follow you read or sing. He can answer your questions and tell you stories from pictures or retell the tv shows he had watched. His favourite tv show is Special Agent OSO.

Since the arrival of Samantha and with her condition that requires more care and attention, I spent less time with Jonathan now. I could only watch him play on his own. Missed putting him to sleep and snuggling beside him. Missed our bathroom fun time. I missed our bonding time so much!

With a new baby in the family, he is learning to behave like a brother.  He is a great lil’ helper and “runner”. He has the brotherly instinct in him naturally. Whenever Samantha cries, he will put aside whatever he is doing and be the first running to her little sister, comforting her. He watched how I take care of Samantha. He reminds me when I forget her handky. He imitates how I express breastmilk. He even use a handky to wipe his chest as how I clean my nipple every time I finished expressing milk. *slap head*

Tell me you like his new hair style. 😛 I love it but many want to chop off his “tail”.

 

Samantha @ 1 Month

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This is a very very late post due to Internet connection problem. This post should be up on 24 April 2010. At 1 month old, she is still tiny and fragile, weighing at only 2.65kg. Will talk about her in a later post…

Samantha – The Challenges

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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?