I think you finally grasp a HUGE concept of time when you have a child, and how quickly it truly passes.
We remember the first time we saw Judah like it was yesterday (it feels like it really was yesterday to us), and we remember the second we could tell something was just 'not right'.
Now we have removed Judah's tube entirely and it has been absolutely breathtakingly amazing. Judah was adorable, tubed or un-tubed, but he is especially adorable un-tubed. And the relief we feel every time we look at him is indescribable- almost like this dead weight has been lifted right off of our shoulders. The relief is something that God has done, it doesn't make sense but it's there, and it is fantastic.
Isn't he adorable without his tube? :) You have to admit, it's pretty cute.
The next part here is for mommy's with NG tubes, it's just kind of the process we went through, so that a mommy dealing with this might have a little bit of insight if she has to do it herself.
Judah was placed with an NGtube at birth, but it was never used. It was removed and he was fed via bottle (he would not breastfeed due to breathing issues) until he was almost 4 months old.
Judah would only ever eat 2 oz at a time, never more. He acted as if it were exhausting, he refused to suck, he would turn his head away from the bottle and refuse anymore. This was okay at first, but at almost 4 months, he was losing weight and we thought we were going to lose him. He didn't gain more than 2 lbs by this time.
After demanding that something was wrong with him for months and months, we finally got to see an ENT. We had seen the same ENT before, but he hadn't scoped Judah's throat. Judah was a loud breather and he had what they call stridor from laryngomalacia. Normally, laryngomalacia is not treated surgically, but his was grade 4, so they used a laser to trim his larynx and treat the tissue. I honestly wish that we hadn't done the surgery, because either way the end result was a feeding tube.
Judah was given a feeding tube 1 week after surgery when it was discovered he was aspirating liquid into his lungs and had developed pneumonia. He kept the feeding tube for 2 months before he finally passed a swallow study and was no longer aspirating.
His suck reflex had entirely disappeared in the two weeks before he passed his swallow study. He didn't really suck on his pacifier very hard and he didn't know what to do with a bottle. The speech therapists demanded he would not be a bottle baby.
I wasn't going to take that for an answer, as I had seen him suck on a bottle two weeks before the swallow study.
I let Judah get very hungry, and then I gave it a try. Sure enough, he knew how to suck when he was hungry, but he wasn't very interested in the idea of it.
We didn't opt to use thick it or a thickener in his formula, because he was not showing signs of struggling with the actual liquid, but with the sucking idea alone.
Our speech therapist, Sky, came out to visit weekly and she and our doctor had come up with a 'plan' of how to feed him. The idea was to let him take as much as he would by mouth and put the rest in his NG tube. He was supposed to eat 6 ounces every 5 hours.
He was barely doing 1 at first, and not eating all of the time. He increased over the next week to about 2 ounces, but he really wasn't interested.
We were still doing 10oz feedings overnight for Judah at this point as well. The speech therapist (Sky) and our doctor decided to take away his night feedings to help drive his hunger. We were great with this idea, although it took away his sleeping through the night, we obviously were excited to work towards getting the NG tube taken out.
After we took away the night feedings, his interest increased in eating, but it wasn't dramatic still.
After 2 weeks, he stopped showing interest in eating during the day, but he would wake up at night to eat and would drink about 4 oz 3 or 4 times a night.
He decided eating during the day was optional, simply because either way his tummy filled up at the right time. (our theory).
at just about a month after we had started, we decided to remove the tube. This was because he was eating well, but only at night, and we wanted to see if his eating habits would change with removal.
As it turns out ANY baby at 7 months old is hard to hold still to eat, and Judah really didn't WANT to hold still, but if we swaddled him (or took him for a car ride) and sang a song or played quiet music in the dark (or dim area), he would be just stuck enough to eat and would take anywhere from 3-5 ounces this way.
Judah started eating from the first day, and now on day 3 of no-tube, he has been eating around 4 ounces every feeding about every 3-5 hours. It's going to be a tough thing to get him on a regular eating habit, but it is absolutely possible and it's going to happen for sure :).
More to come.
Blessings to you and your families :D