July 18, 2010 - Posted by Julie - 17 Comments
Samantha is back home from hospital last Thursday after her readmission for 16 days. We hope the hospital won’t be our second home. It’s quite scary in the hospital as you would see all kinds of patients with some having metabolic disorder like Samantha. The first thing that came to mind is will Samantha be like them? If you know the prognosis of her medical condition, you’ll have the same fear as we do.
In summary, Samantha is suffering from a disorder called Mitochondrial Disease which also caused her lactate acid and PH to be very high. You can read more here as it’s too scientific for me to explained. This disorder has affected her kidney, liver and brain at this juncture.
Initial abdominal ultrasound could not locate her left kidney and so they suspected that she has only one kidney but latter ultrasound managed to located her left kidney but it is very small. Since her renal profile are quite normal, they will perform a functional test later on her.
Her liver is enlarged. Current size is about 5cm compare to normal size which is about 2cm. The doctor are still monitoring her liver for any liver impairment for liver failure.
We had the MRI brain scan done for Samantha and the result shows that the part of her brain that controls her motor skills are badly affected. Her eye may be affected as well as the brain controls the eye vision, movement and coordination.
Samantha has to go home with a nasogastric (Ryles) feeding tube. Not what we expected but at this moment, we can see this is the best for her. Most importantly, it can help to reduce her vomiting as tube feeding is a gentle way of feeding. She doesn’t have to use much energy as compare to sucking from the bottle because the milk and medicine/vitamin enters her stomach directly. Tube feeding is common for children with failure to thrive.
Administering medication to her is much easier now as she doesn’t have to get agitated with the horrible taste. Feeding through the Ryles tube requires a feeding infusion pump that controls the delivery rate of the milk (75ml in 3 hours). This will restrict her mobility as she has to be hooked to the feeding pump for at least 3 hours. Another way is to use a Bolus (a type of syringe) but the flow of the milk is faster.
When we looked at other parents with their normal child, we are challenged mentally and emotionally. However, after all these, we are still glad and thankful. 🙂 We are unable to forsee the future and what is the life span for Samantha. What we could do now is to look upon God for His healing powers. Take things one step at a time and appreciate the moments that we can have with Samantha without neglecting Jonathan.
p/s: To all the mommy bloggers, sorry for not visiting your blog as often as I used to be. Will do that once things are sorted out.
July 11, 2010 - Posted by Kimmy - 12 Comments
All praises and glory be to God.
Today is the 13th day Samantha stays in the hospital. Her conditions are getting better with her urge to vomit stopped. The urge gradually lessen after blood transfusion were done on Wednesday and Thursday last week. This apparently helped to further reduce her lactate acid from 17 mmol/L to 10.1 mmol/L. That is great news for now.
She will still feel pain in the stomach and discomfort from time to time due to the acid level and air in the stomach. Sam is also very clever girl. Even if the medicine is fed via the feeding tube, she can still “feel” the medicine taste and would try to cough/vomit it out. Hopefully she will get over with it and take it willingly. 🙂
Doctor is now monitoring her progress and is expecting to discharge her by end of this week.
Julie and I are doing well. We’re blessed with Julie’s mom who is helping to take care during the day while we are at work.
Thanks to all of you for your concerns and prayers.
God is listening and answering our prayers. May all praises and glory be to our God.
July 2, 2010 - Posted by Kimmy - 14 Comments
Samantha has been continuously having constant vomiting even after the last admission. For the past few days, we saw that she became lethargic with sunken eyes. She don’t even cry for feeds anymore, only cry when uncomfortable. She has very mild absorption of food that we feed her, even with breast milk.
On Tuesday, we made the choice to admit her again to hospital. This time, we’ve admitted her to KL General Hospital. She was immediately put on tube feeding and oxygen gas. 10ml on every feed with 5ml of water through the tube.
Doctors there are trained for metabolic disorder patients. Samantha will be reassessed again on her symptoms.
Her lactate acid is now at 17 mmol/L (normal human is 2 mmol/L).
On Wednesday, her feeding is controlled by a profuser machine which will evenly feed her 30ml of milk over a period of 3 hours. She stills vomits but hardly could notice milk stain now. She has also gained some weight from 2.9kg on admission to 3.15kg this morning.
Doctor is suggesting that Samantha to continue using the profuser until she gain enough weight.
Get well soon Samantha.
June 14, 2010 - Posted by Julie - 16 Comments
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.
June 8, 2010 - Posted by Julie - 14 Comments
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.
June 4, 2010 - Posted by Julie - 13 Comments
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.
May 24, 2010 - Posted by Julie - 8 Comments
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”.
May 18, 2010 - Posted by Julie - 17 Comments
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…
April 14, 2010 - Posted by Julie - 22 Comments
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?
April 8, 2010 - Posted by Julie - 30 Comments
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.
In the morning of the third day, she was not getting much better but her condition deteriorated with very high acid level in the blood (pH 6.8 compared to normal pH 7.6). Pediatrician informed us that we need to send her to a bigger medical centre for further examination. He called all of the government hospitals and private medical centres but non are available to accept the patient. At last, without a choice, we ended up at Prince Court Medical Centre (PCMC) in the heart of KL city. We are aware of the higher medical charges but we rather not put the baby’s health at risk by waiting for another few hours or a day until we get a cheaper hospital. Pediatrician immediately arranged for the ambulance to transport baby Samantha in the incubator accompanied by Darling.
In the afternoon, I got myself discharged, one day earlier with my sisters’ help. Good thing that I was strong enough and had recuperated quite well from the C-sect. I never thought that I would be wheeled out from the hospital without my baby in my arm. I had to be strong to face every challenges and Darling and I knew that Samantha will be in good hands.
At PCMC, Samantha’s condition was quite severe. She was admitted due to severe metabolic acidosis. When the doctors briefed us on her condition, they sounded very unpromising if Samantha can make it through or if there is any brain damage. She was sedated with tubes and wires every where. Every second, every minutes, every hour and every stages that she is going through is like a battle you never know if you will win. But by faith, we prayed to God each time she goes through a procedures. That night was a painful and scary night for both Darling and I. We are very thankful and blessed that we have a group of doctors and nurses that are very caring, loving and sincere, that are willing to put in every might and effort to stabilize Samantha. Due to the severe acidosis, the doctors had to perform a blood exchange transfusion and peritoneal dialysis to remove as much acid as possible. The whole thing lasted until past midnight.
The next day and days after that was really amazing grace of God. Her acidosis level and pulse rate slowly improves. She fought strong and progressed very well for a tiny baby like her. It was a great joy seeing her getting well every day. Indeed God is good…all the time. Indeed God is watching over Samantha. Whilst she was in NICU, we whispered to her everyday that Jesus is holding her hands to walk through all these and she’s going to be fine. Amen!
And so here is our little girl on the day she was discharged from hospital. Tiny she is but the angel of our heart. We are still praying with faith that she would not suffer from any developmental delay, learning difficulties, physical handicaps, behavioral problems or sickness which could occur in babies affected by IEM.
