This is an exciting week for us! Leo will be finished with his fat-free diet this Thursday, so potentially Mark and I will be able to take his NG tube out in only 5 days!!
This past week was so rough, and we even called the nurses at 4-D one night asking if we could take it out, lol. One of our favorite nurses answered the phone that night and he gave us words of encouragement along with saying how the dietician probably wouldn’t like that. So here we are… with the end in sight. Thankful that Leo only had it in for 51 days this time. We know of families who have been “Tubies” for over a year. So much work!
So here’s my post on living with a NG tube, to answer questions you may have and to remind ourselves all that we have to be thankful for. Mark said today how funny it would be if we end up working in a location where tribal kids need NG tubes. That would definitely be God at work ahead of time!
I didn’t take any photos of us putting a NG tube in Leo (we received training from the nurses at Sick Kids – don’t do it without training!), as it is pretty sad to watch. Leo doesn’t pull at his tube, but it accidentally comes out about 1-3 times a day. (For a while he vomited it out his mouth at least once a day! So nasty and so weird!)
For those who are interested in what’s like to put a NG tube in a baby you can watch this video on YouTube:
Five times a day, beginning at 7am, Leo needs to “drink” 150 mL of Portagen, a fat-free formula, through his NG tube. This is also called bolus feeding (vs. continuous feeds).
First, you have to measure out and mix the formula for the day. We are blessed in that we received thirteen $30 cans of formula for FREE thanks to the CCAC program. They also covered all of the NG tube feeding supplies we need for Leo, as well as his medications, and sent nurses to visit us at home weekly to check on how we are doing.
The morning begins by putting 150 mL into Leo’s feeding bag then heating it up in a hot water bath. While that warms up we gather our supplies. A bonus of having a NG tube is that most of Leo’s medicine can go through it, too. (Leo had a slight chest infection and flu this past week, so he had a little more medications than normal lol).
We use the stethoscope to prep Leo’s stomach by inserting 2 mL of air into the NG tube while listening to his stomach. If we hear a swooshing pop sound, we know that the NG tube is in the right place. Then we draw the 2 mL of air back into the syringe, along with some stomach juice. We test the stomach juice on a pH strip to check the acidity levels in the stomach.
If everything sounds and looks good, we give Leo all of his medicines then flush the NG tube with about 3-5 mL of water. Leo is then all ready for his formula!
Then we hook the feeding tube to the NG tube…
… and find somewhere creative to hang the feeding bag, as it is gravity fed. We take clothes hangers and hooks with us wherever we go, as we can usually find somewhere to hang Leo’s bag. We fed Leo at a Wendy’s restaurant once by hanging the feeding bag on the lamp above our table. Lots of strange looks, but you do what you have to do!
Leo gets a lot of stares wherever he goes – mainly by kids. I can’t blame them, as most people usually have no idea what the tube in his nose is. It’s fun to hear their curious questions about the tube, and being able to explain it to them.
It takes around 25-45 minutes for all of the milk to go through the tube. We finish Leo’s meal by flushing his NG tube with a syringe of water. Then we have to clean the feeding bag, tube, and syringes with hot soapy water.
I’m probably forgetting a lot of things, but this post wasn’t meant to teach others how to do it – just to show friends and family members on how we’ve been spending most of our days these past six weeks, lol. I’m also pumping one to two times a day which also takes time and creates more things to wash. Leo is eating fat-free foods like yogurt and pureed fruits throughout the day, so I feel like I’m feeding him ALL day haha.
You can be praying for this week as we try to get Leo to drink from a bottle or a sippy cup. He also hasn’t been eating as much solid food since he got sick, but he seems to be feeling a lot better today. We really want this NG tube out! We’re so exhausted, and Mark is so tired of continuously re-inserting Leo’s NG tube when it comes out. As our friend from the hospital says, “NG stands for No Good.”
I’m thankful for the grace that God has given us to endure this NG tube. I’m thankful that this was the only major complication from Leo’s surgery. I’m thankful he no longer needs these feeds at night. And I’m thankful that we only have one more week as I know there are kids with GI issues who are on these for months! NG tube is “No Good” but God IS good!