NG Tube-less ; The freedom off the tube

Updated: Nov 13, 2019

Its finally come! The day to let go of the NG Tube is finally here!


Do I look different to you> Notice anything? YES! His NG Tube is GONE!


Oh happy day, we finally get the go ahead to take out that awful and yucky tube. I get to see my babies face without a cord and tape on it for the first time in a while. I had seen it once or twice before but never for a period of time that would actually matter.



He's finally finishing his bottles enough to where we are only using the NG tube as a precautionary measure. In the event that he starts to not eat as much, which is only 2 oz, then we will use the tube to feed him.


We are working hard to get him to finish his full two oz without pushing it. New to our knowledge, if you push babies to keep trying, they actually burn more calories than they keep. Which is crazy to me but hey whatever. I just want to let him gain as much weight as possible and if that means taking a break to feed him and then when he wakes up fussy, let him eat the rest of his bottle, then so be it.


His doctors, who is Pipes doctor also, told us it didn't have to be perfect every time. It seems that his 3 o clock feedings are the hardest both at "lunch" and in the middle of the morning. We try as much as we can but sometimes he doesn't always finish it. As long as we finish that bottle in four hours, its safe to still drink before going bad.


Our adventure and education with the NG tube will always stay with us, but we are happy to see it go. At first, the Sleep Apnea machine was only because he was tube feeding, but they did the download of the machine and say that he had 13 alarms. 11 of them were false alarms but there were two alarms that were actually something.


His heart rate dropped the first time for two seconds and the second time it was for 14 seconds. Both times he was asleep and stretching so it really wasn't anything concerning. But because of that, they want us to keep the machine for a week or two or three longer. And speaking with Ryan about it, we aren't really ready to let go of it.


As much as I don't like the cords, its an instant reassurance that he is okay. I know thats slightly irresponsible considering we will have to EVENTUALLY let go of the machine and trust that he is okay, but we have been through it ALL and I am thankful that we have a loud and obnoxious alarm that goes off when something is actually wrong. But once it is gone, the Owlet will be great to have even if its constantly.


The next few appointments we have are his check ups, and so far we have seen the GI doctor and his Pediatrician. His pediatrician is happy to see him and says that he is doing and looking super well. He is starting to get some chub to his cheeks and he is thickening up and we couldn't be happier. He also showed off his super sweet neck skills with some tummy time in her office.


Most Down syndrome babies are extremely lame and don't have much for neck and jaw muscles. But from the beginning, he was going to town on his pacifier, defying the jaw muscle odds and even now, he lifts his head and looks around and at me when he has tummy time on my chest. It makes me so happy to see him so strong.


His GI doctor said that he is the healthiest patient that they have, that he seems more complicated than he actually is. His incisions from his surgery look great and are practically healed and are disappearing, and that he is eating well. I am beyond happy to hear all the good news from his doctors.


The sad thing that we have to get over, is his and Pipers Pediatrician is leaving Peds and the practice. We are UBER sad about that. She first started her practice at the other well known children hospital in Atlanta in the Cardiology wing, of which 50% of her clients had Downs and she got so well versed in the needs of Down syndrome babies. I am confident in the other doctors at the practice, but man does it suck to have to loose someone so valuable to use. She has been such a help to us with our first child and we were hoping to keep her around for the second. Alas, she gave me her number and said I can contact her (within business hours) if I ever had any issues or questions.


Seriously, never take for granted the Pediatricians in your childrens life. They are so valuable and much needed throughout the entire process of their growth.