In order to have KR’s palate surgery done, the NGtube has to go and for that to happen, this boy has to really work on his swallowing so that he can start taking sufficient feeds orally. It’s been 1.5 months since we started seeing Aunty T and we have seen marked improvements in the short span of 6 weeks.
KR used to be very defensive whenever we wanted to do facial massages for him. He would either cry or turn his face away. Now, we have progressed to doing it before every meal with an addition of oral massage as well, to stimulate his oral cavities. We had also moved on to having him sucked on my finger that’s dipped with milk while we tube fed him. Aunty T and the SLT in KKH were very impressed with his improvements as he moved on quickly to runny cereal fed by the spoonfuls.
However, just when we wanted to move on to doing the videofluroscopy in week 6 of seeing the private therapist, KR refused to eat the prepared porridge during his session with Aunty T in week 5. *cries* Aunty T later advised that KR was trying to tell us that we are moving way too fast for him.
Slow down mama, slow down…
We made some improvements over the next two weeks and then KR again, went into some form of food refusal. Feeding him a tablespoon of runny cereal for 20mins soon took a toll on me. At some feeds, I found myself being impatient and kept wanting to feed him the next spoonful before he even managed the previous. There were also times when I decided not to even try cos I felt very tired kneeling before his baby rocker, holding a teaspoon with one hand, a bowl in the other, multi-tasking to pump milk as well as having quick thinking to put down the food in order to stop his nimble hands from trying to pull off his NGTube or to keep his hands occupied so that I can find the opportunity to put in the next spoonful. Not to mention, the singing and cajoling in between spoons to get him to stay focus on eating. Feeding became a chore on some days. Exceptionally dreary when he refused to even open his mouth; when he would instantaneously turn his face away, cringe and cry when the spoon approaches.
Aunty T advised to move back to just cereal and stop the porridge. At this point, I was discouraged and began to feel anxious.
When will I be able to remove the NGtube for him?
When can he go for his palate repair?
Why does he need to struggle with eating?
Why must it be so effortful for my baby to learn to swallow?
Shouldn’t it be natural to want to eat and enjoy food?
The list of whys, shouldn’t it be went on as melancholy swept over me.
During each feed, I would try to also video the process and have Aunty T review it. She will then let me know how I could work on the feeding with him. One day, I sent her a video showing how cranky KR was during the feed and I had to resort to bringing out the “forbidden” toys and cajoled him like what an Ipad would do in order to get him to eat.
I failed… 😦
I sent that text together with the video to Aunty T and she called me soon after watching it.
….tango with him…
Her call encouraged me as she affirmed me of what I have been doing with KR and explained to me how common food refusal is for babies/children who has NGtube/ Gtubes. I especially liked her piece of advice when she told me to “tango with him”. If I may interpret, move on as he moves, retreat as he does… treat this swallowing therapy like a dance. Enjoy every move and sway along with the music. It should be lighthearted and enjoyable. No competition, no fight against time…
After that day and some good time with God, I got the group of prayer warriors to pray for KR’s swallowing and eating. I woke up the next day feeling recharged and ready to help him overcome this feeding difficulty. With a clearer mind, I reworked on his feeding schedule, the amount of milk to give and also the choice of semi solids to feed him. There were days when it’s good and of course, there were also days which were tough but what’s different this time round was my mindset. It’s about having a “tango with him”. It has been enjoyable… 🙂
It will only get better, KR. Mama will work hard together with you. You are not alone.
Thankful for you, Aunty T.