2-in-1 surgeries when Jansen was 3-months-old

After his diaphragmatic hernia's surgery, he continued to rely on different types of breathing machine and at 2-week-old, he started being fed mummy's milk via NG-tube (naso-gastric tube meaning nose to stomach). Yay! New achievement!

However, at our dismay, he frequently vomited after feed which then he was sent for a test to view his degree of vomit and thereafter doctors found out he had severe GERD (gastroesophagael disease) and they also termed him as "failure to thrive" because he didn't really grow as expected. FYI, his birth weight was 3.65kg (a super healthy weight). It dropped to 2.5kg in one-month's time in ICU.

Doctors also were extremely careful about feeding him from mouth as they feared his sucking could not synchronise with his breathing (as he was catching up breathe due to super small right lung) and might get choke and worse food might aspirate into his lungs. So doctors didn't really encourage feeding him from mouth. They were trying their best to protect his lungs as he was still in critical state although at 1-month-old we got discharged from ICU to pediatric-respiratory ward. Due to his condition, he was given a room of his own so that he would not get other infection. That time, any minor flu or cough bug could kill rather instantly as he had only 1 functioning lung.

Therefore to fix his reflux, doctors called for Nissen fundoplication to be performed on him. At the same time, simultaneously performed Gastrostomy for g-tube feeding (feeding via stomach).

NISSEN FUNDOPLICATION

To tie his upper stomach with his own stomach muscle to create artificial valve to help prevent food from going back up into esophagus which might enter into his lungs and caused damage. This operation cannot be undone eventhough if there were any defect or complication. That was the reason my husband and I were reluctant to agree to it but doctors sat us down in a meeting with panel of them to help us focus on the present that was to save his lungs first and not to focus on the future complication he might need to suffer. At last, we were left with no choice but to agree for the surgery.

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You will notice after fundo, one's stomach becomes smaller. Therefore for Jansen until today is smaller volume's meal and feed more frequently
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GASTROSTOMY in my own term

This is for stomach feeding. To create a hole from abdomen muscle right into stomach lining. To me this surgery looks more like drilling work. Again, it was painful to hear the procedure but doctors told us he could not be feed through nose forever. Changing of NG-tube every 1 to 2 weeks might incur some hurt to his esophagus lining also he didn't look good with the tube at his nose. And of course it was not comfortable at all to have something in your nasal and throat 24hours. Hence, doctors thought this was the best for him to support his nutrients intake and proper growth.

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After the surgeries he was under intensive care again at ICU but only for 1 week, then we were back to pediatric-respi ward. Again, they tried on him different mask, different flow, different pressure to see which type of breathing machine suited him.

There were good news that we were on the journey of discharging; choosing the best breathing machine and bought it, raise funds as machine itself (bi-pap) was RM27k(altogether medical costs, hospital costs, vaccines cost, misc, we spent a good amount of RM50k), learned emergency resuscitation, learned suctioning him, and waited for him to be stabilise enough to be home-cared. Bad news was with the stomach artificially tied up, yes he could not vomit, but he also could not burp, causing discomfort after tube-fed. He started gagging and retching up till today!

before surgery

after surgery mask trial#1

after surgery mask trial#2

after surgery mask trial#3 and so far the best of all

One of the posters that kept us going at hospital

The best news was HE WAS DISCHARGED AT 4-MONTHS-OLD!!!

Finally at home! Wounds are still fresh and he is getting used to the Mickey-feeding button

Finally big brother gets to bond with little brother. Hospital does not allow children younger than 12 years old to enter his ward

Bonding continues till today, and upgraded with wrestling & fighting. Part and parcel of love relationship

LOVE NEVER FAILS 💗