Since we took out the tube, we have been experiencing breakthrough upon breakthrough. The past 7 days hadn’t been easy because we were desperately trying to get baby to drink up but there was only just this much that he could manage or desire. His diapers were wet but just not wet enough. Of course I was worried when I saw how little pee pee he had. Barely one very very soiled diaper for the day! With KR’s difficulty in swallowing liquid as the main issue, drinking big quantities was a very far fetched and daunting vision.
Everyday, all I could think of was how to get him to drink up more. Honestly, I questioned many times if I had really heard God right? With the crazy weather, hydration is just so important. I remembered on Day 2 KR did not pee from 12pm to 5:50pm. I was desperate. I told God, I am going to reinsert at the 6th hour mark cos I was crazily anxious. At at 6pm, he peed. BIG *phiew*
I hung on to the 3rd day and the 4th …. on the 6th day, a mummy friend who is a medical doctor saw KR when we brought him to pick KX up from school. She candidly remarked that he was looking good but her daughter at his age was still drinking 800mls of EBM a day. It was not an unfamiliar piece of information but when I was reminded of it, the Mother me can’t help but to think why am I depriving my son of nutrition and water? Am I doing it all right? Did GOd really spoke to me? I started to doubt. Again. I walked into KR’s room and watched him napped that afternoon. As I prayed for him, I asked him, in my heart, “would u rather be well fed and nourished and live with a tube or would u rather be malnourished and live freely without one?” I can’t help but to tear a little to nap that day.
Trust in the Lord … lean not on your own understanding… (Prov 3:5-6)
That anchoring scripture that made pull out the tube came back to my mind again and again. During snack time, I poured out 50ml of EBM and tried feeding him with a tub of purée. He was receptive! As he got a little suspicious of me trying to sneak milk into his mouth with the purée, this boy started shaking his head vigorously. It was at this moment that I decided to take out a piece of Plum teether (wafers) and see if he was keen to eat it with the milk. KR took the first bite and then kept opening his mouth for more. I dipped the wafer into the milk to soften and let him bite on it. And then in between give him spoonfuls of milk. It was a success!!! So I gathered that day that KR will only take in the liquid when he has some solids to chew on. NO wonder we could ONLY achieve 20ml per day previously cos we gave liquid on its own.
And I can definitely understand why cos he has never really drunk before. It’s such a foreign skill to him. His first actual oral experience was cereal eating. Prior to that, it’s pure tube feeding and very minimal milk dipping while feeding to help him make the associations between tube feeding and actual eating using the taste of milk, anyway.
Looking back the past 1.5 week, KR has made phenomenal improvements. Just on day 1, KR has made a 6x improvement compared to when he had his tube on. He drank up 120ml of milk in his total liquid consumption for the day! 120ml may seemed very little but it’s an unexpected volume because We have never reached it before. The next few days, KR slowly increased in his oral liquid feeding and today he had achieved 240ml in a day.
1. We fed frequently and small amounts
2. We fed it with solids
KR’s water consumption for the day has gradually increased over the 2 days even since we discovered the best way to feed him liquid is with the help of solids. His wet diapers have also increased and he is beginning to put on some weight. So so thankful 🙂 we are still working very hard to make sure baby takes about 400ml fluid orally. Since the Lord has told me to take out the tube, I believed he is going to continue to work the miracle; the impossibles which men has said, and to show He is God.