Tomorrow we go home!
I am 90% thrilled, 10% terrified.
My baby will be going home with a tube down his nose which will feed him 24 hours a day. His home pump, supplies, and pole were delivered this afternoon, after an extremely stressful morning where for about 2 hours, we were told insurance wasn’t going to cover any of it. But we have a kick-ass doctor who wrote a letter saying if G doesn’t have the the tube at home, he will require multiple hospital stays and could die. I guess you have to be dramatic if you want to get anything done with insurance! So we’re good, covered 100%. Whew.
Grayson is doing really well. He’s already gained a little bit of weight, and is tolerating the constant feeding really well. He did throw up twice today, but very little, and the doctors aren’t concerned. And he’s feeling better too- he’s smiling, giggling, and kicking his little legs and waving his arms as if to say, “Wow! So this is what it feels like for my tummy not to hurt! Woo hoo!”
When I asked the doctor how long she thought he’ll be on the tube, she said at least a month. She said right now, there’s a 50/50 chance that he’ll have to have surgery to place a G-tube, which is a more permanent tube than the NG tube he’s on now. Really it’s up to G- how well he gains weight, and if he’s willing to take the calories he needs by mouth (right now he’s not even close). But we’ll pray that because his tummy feels better and will be emptying at an appropriate rate, his appetite will increase.
I have a lot of anxiety about going home. The NG tube requires a lot of maintenance- I have to syringe out some of his stomach acid and check the pH twice a day, and then push it back in (eww). I have to listen to his belly with a stethoscope and push air into his tummy and listen for a swoosh sound to ensure proper placement. There’s cleaning the bags and tubing, administering meds through the tube, and of course making sure G isn’t pulling on the tube and making it come out.
If the tube comes out, I won’t be putting it back in. I just can’t do it- I’d be too scared I was doing something wrong. I’ll be taking G to the pediatrician and she’ll do it. Let’s just hope it doesn’t come out on the weekend, because then we’ll have to go to an urgent care center.
I’ve been practicing all the steps today, and am feeling pretty confident. But it’s a lot easier in the safe cocoon of the hospital with a nurse looking over my shoulder to make sure I’m doing everything right. It will be a lot different when it’s just me at home. I’m sure in a few days I’ll have the hang of it and I’ll look back at this and wonder why I had so much anxiety. I’ll look forward to that day!
But, at least we are going home. I think 10 days has been quite enough for this “vacation”.
I think this dude’s ready too!
You will be a pro at it in no time!!! Glad y'all are going home!
I am so thrilled that you are going home! I know that everything for the tube feels daunting, and it is, but you get used to it. I have several things I have done to make tubing life easier and hopefully later tonight I can come back and tell you some of those things (I've got to put B to bed now). On FB, go to the tube feeding awareness page. There are tons of tubie moms on there and many of the kids have NG's. They are a lot of help.
I am so happy you are going home & even happier that G is feeling better!!! Practice makes perfect and you'll get the hang on this in no time! I remember my mom being really worried about this when my dad was being fed via IV when he was being treated for cancer, but after a week or so, she could do it with her eyes closed. I know that it will be the same for you.Keep your chin up, mama. You are doing such an amazing job. xoxo.
Ok I'm back. The FB page is actually called feeding tube awareness. My biggest tip is to organize all of your supplies carefully. The tapes, tubes, syringes, etc. should have a special place so that you are not looking for them continually. As for the feeding pump and IV pole at night, you can tape the NG tube down his leg, and put the IV pole at the end of the crib/bed. This way he is less likely to get tangled in it.I'm glad that your pediatrician has agreed to place the tube if it comes out. They taught us how to do it, but after trying to place it ourselves, we just couldn't do it. We knew we were moving on to the G anyway. But, if you are going to be withdrawing fluids and making sure it is placed correctly, you just might surprise yourself and end up having enough guts to place it yourself. As for feeding in public…just do it. It sounds like he will be on a continuous pump, but if he goes to bolus feeds and you find yourself out during a meal time, just do what you need to do and feed him. I spent a long time not wanting to offend people by feeding her in public, and in fact I still get worried that someone will say something, but I have it rehearsed what I will say. I will say, "I'm just feeding my baby. This is the way that she eats."I remember when B had the NG, people would stare. It was hard for me and I got angry, just like I still get angry when people stare at her glasses. But just ignore it. And if you feel like telling them to stop, then tell them. I'm happy that you can now relax and not worry about him not getting nutrition. If you have any questions please don't hesitate to text or call me.
Adorable picture, he looks great! So happy you are heading home today!! Enjoy your own bed, hooray!!
GOOD LUCK! It will be so great being at home and you will definitely get the hang of everything in no time.
thinking of you! Good Luck and Welcome home.
Soooo when is the welcome home party? Glad your home. I am sure he is glad to be out of the baby cage crib- someone can surely come up with a cuter option for beds at hospitals! 🙂