Flashback - Birth till discharge

before you freak out and wondering what happened again??? this is a post of the past that i had to write up to submit to the institutes to apply for a seminar so i thought i post it here as well. so this is what happened last year in 2006

Right after I birthed Jere, the neo natalogist Dr Simon Ng was called into the delivery suite to examine him, briefly told us about Jere's birth condition and had Jere wheeled straight into the Neo Natal Intensive Care Unit (NICU) I was not allowed to breastfeed him Baby J was scheduled for operation at 1600 hr to cover up the spine. Then at about 9 plus that morning, it was the first time we met Dr Choo Su May, the anaesthetist for the op later. Was given the greenlight to feed till 1330hr.

Baby Jeremiah had a smooth operation 5th July, 2006, yes the first day of his life to cover up the open neural tube defect and was on morphine till 5am, 6th July, the following day. At first Jere was laid prone to rest but due to the bouts of apnea (stop breathing)he was flipped over from prone to supine (on the back) hoping that there won't be any more such episodes. The doctors told us that breathing was slow. He had a plastic box over his head which they explained was the oxygen tank and MRI and blood count and other tests were ordered for him.
We were told that Jere had no Babinski reflex ( that is the doctor's term of running a key or tickling the soles of the foot and the toes should curl up). He seemed to have no feeling. There was also little or no anus puckering when the dr stimulated him near his bum. He also pee only when the nurses did bladder compression.
The doctor explained that this means his motor movement of his legs and feet, his bowel and urinary movement are all affected.

On the 7th July the results were all out. Blood count ok MRI scan shows chiari malformation type 2, syringomyelia and myelomeningocele and an absense of corpus callosum(the bunch of nerves that communicates between the right and left brain) and mild hydrocephalus (water accumulating in the head) is seen. There is also more than normal water in the spine, supposedly due to the syringomyelia.
Good news is later that evening, no more episodes of stop breathing and he was allowed to take 5ml of ebm every 3 hourly. The doctor was monitoring his liquid intake as there is more than normal amount of water in his head and spine.
On the 8th July, 3 days post op, the nurses said he had slight jaundice and had to be put under the light. Other than that, his recovery from his op was uneventful.

On the 9th July, Jere stepped down. His condition was more stabilised and they moved his bed. There are different classes. The class he is in now is more stable kind... without the oxygen tank and what nots...though still in neo natal intensive care unit (NICU).

2006 12th July Jerry is done with his antibiotics. Plug taken off. Doctors are monitoring him for another two to three days about what I have mentioned before, water system in head, spine and suspect of leakage at his operation wound site.
2006 13th July In the morning we were told there seemed swelling at the operation site. Neuro surgeon is monitoring for leakage. Doc says there is water that just wont drain off. Usually it should go into the blood stream but seems like it's not happening. The swell and bulge could also be due to water leaking coz there was not enough tissue to cover when the op was done as bb jerry was only less than a day old then.
Afternoon about 1600hr, the neuro surgeon Dr Tang called to say that he had to schedule Jerry in for an op to repair the leakage at 1900. We pushed him into the operating theatre at 1915. At 2215, Jerry finally was pushed up. Dr Tang said no problem and explained he had put in artificial tissue and glue and Jerry would be put on antibiotics for next 7 days and be observed.
2006 14th July Baby J was still in the warmer and a little fretful so paracetemol was given.

2006 15th July Dr Tang called to say that fontanelle is soft but head circumference is 35 cm and to continue monitoring. He is on drip by the foot as his hands swelled. Looking hungry but not allowed more milk as they are monitoring the liquid

2006 16th July Dr Tang called to say the fontanelle is sometimes tense and bulge at the operation wound and explained that could be due to the water up in the head and to KIV a CT scan tomorrow. Other than that the wound looks alright and no fever.
2006 17th July Dr Tang said could hold the CT scan. Jerry’s head circumference increased to 37 cm from 35.5 and Dr Koh say that it's obvious there is water. Scan results is out. Dr Tang says does not warrant a surgery yet. Praise God.
Now monitoring head circumference. if it stays that way, Dr say will let it be. Dr also says pray for the op wound to heal nice as it shows a little bulge. on a positive note, so far lab tests for bacteria is negative which is good news.
Praise the Lord. Jerry's now weighin 3.8kg from his 3.37kg at birth on the 5th july.
He smiles when we talk about him or talk to him. His wound seems a little bulging now according to Dr. May be fluid inside....
2006 19th July Jerry condition is stable. Head circumference remained constant. Praise the Lord! Today last day of antibiotics. To be under observation for next three days. Please pray for no complication and infection so jerry can come home this weekend. He is two weeks old today. no news from doctors = good news i would say.

2006 20th July Done with antibiotics. Plug will be removed today. will be given bcg and hep vaccination. Please pray against all complication and infection so that jerry will be discharged soon. As his spina bifida's condition may affect from his waist down, tomorrow jerry will be doing an ultrasound on his kidneys.
2006 21st July baby Jeremiah Liauw is discharged back home after two ops and sixteen days in Neo natal intensive care.

2006 24th July It's been a little madness as we try to maintain the cleanliness of his op wound as it's so near to the buttocks that when bb jerry poos, sometimes it gets to the wound. And though the dressing is supposed to be water proof, it somehow seeps in. then it's crazy for us as we try to take the dressing out and change the new one. It’s so painful for jerry and so painful for us to see as well. We use an 8 by 5 dressing for the op wound so that is about how big the wound is. God please grant jerry complete healing.

This wed 26th, jerry is due to be checked by the pediatrician.
Thurs 27th, we got a referral letter to be seen by the pediatric surgical dept in kkh
Fri 28th, jerry is due to remove his stitches of his operation. Please pray against leakage and all complications.

So far, what I know of jerry's case is it's myelomeningocele ( the more serious case of spina bifida), syringomyelia (related to Chiari Malformation) and chiari malformation type II.
Also, there is absense of corpus callosum which worries me as i read that it's the nerves that communicates between the right and left brain.
As for his no control over his bladder and bowel movement, please continue praying. It’s probably caused by syringomyelia which is something like a cyst growing on the cervical cord. In Jerry's case, his MRI scan shows syringomyelia in the lower cervical cord extending along the entire length of the cord. This syringomyelia also cause the obstruction in the normal flow of cerebospinal fluid (CSF) thus, we hear of fluid in the spine as well as the head (hydocephalus)

Please continue to pray for Jeremiah Liauw
2006 27th July Yesterday went to kkh.
Did urine culture and urine analysis tests. Results not out. It was so hard trying to catch his urine as he was laid down and we just waited and of coz he was not comfortable so he cried throughout.
appointments were given for several other tests of which all are intrusive



2006 28th July Baby Jerry went to remove stitches today.
Really stressful for bb, dr, nurse and mummy.
Mummy went with bb J.
He was not sedated or anything, just some lotion applied before removing the stitches.
He was crying throughout.
finally doc removed some and said to return on mon (31/ to remove the rest.

What’s lined up for Jerry?

Aug 1, Tues - Micturating Cystogram (MCU) A fine tube will be put through the urethra (the hole thru which urine is passed) with a special solution running slowly thru the fine tube into the bladder. x rays films are taken by the radiologist durin and after the procedure.

Aug 8, following Tues - Urodynamics (UDS) a cold liquid is used to clean the part where pee comes out from (penis) then some numbing gel will be applied then a small tube will be inserted into the bladder and another small tube that goes in through the anus. it will be monitored for about 15 min then the child is to pee out.

Aug 21 Mon - Nuclear Medicine Treatment (DMSA) a nuclear medicine (radioactive agent) or (radiopharmaceutical = a chemical compound that contains a small and safe amount of radio active substance with a very short half-life which means they cease to be radioactive within a day) is injected into the vein of the child. Images are then taken either immediately or within the next few hours. the child will be positioned on a special detector called a gamma camera which picks up signals from the radiopharmaceuticals the child received.

all the above are tests from the urologists as spina bifida cases tend to affect waist down so they need to find out how well is the bladders, kidneys, etc.

Please pray for BB Jerry.
I know it's gonna be painful coz my dad been through those with the tube inserted thru the penis and anus. my dad has a high threshold of pain such that he can do a colonscope without being sedated or taking any pain relief but he was screaming through out the procedure where they insert the tube in his penis and anus even after taking panadol and the so called numbing gel.
Please pray for positively good results

then bb jerry will return to doc and get further blood tests.

Please continue to pray for bb Jerry and us as in our family. This really needs so much strength and I tell myself everyday I will not be beaten! I will not fall and I won't fail my God, jerry and of coz all that are behind me which includes all of u. Thank u again.