What a week we've had! Sometimes I feel unsure of sharing good news because things with Noah change so quickly. I hate to disappoint. The joys of being a people pleaser! So, I may have to retract information in this post at a later time......BUT I HOPE I DON'T HAVE TO!
We've had a liberation in tube feeding. Last week I asked Jared how he felt about trying a bolus feed via syringe. He was all for it so I began to try 250ml feeds 5 times a day with Noah. I went very slowly at first, taking 45 minutes to pour the formula in through Noah's g-tube. We found that 250ml was a bit much for Noah to tolerate so we moved to 6, 200ml feeds. The best part.....we are doing feeds every two hours, each lasting about 20-30 minutes, and are all finished before bedtime. That means Noah goes to bed without a night tube. I have not washed a feeding bag in 5 days. Does that ever feel good!! Again, this might not be the end of bags/pump etc. but for however long it lasts, will take it.
Not surprising to us (but it does seem to throw the dietitian and Dr. for a loop) Noah is still not willing to eat or drink in the morning. Even after being off formula since 7pm in the evening, he won't even take a sip of water in the morning. Like I said, not surprising to us. Most of the professional "theories" given about Noah have been proven otherwise by his choices. All we can do is offer him food and let him decide what to do.
I have a product to share about this week. I am loving Noah's new Button Buddies. They snug up around his g-tube and seem to be much more effective at soaking up leaks from his stoma. We had been cutting make up remover pads for the last 6 months. Despite stopping acid production via medication, the leaking does cause skin irritation. Hopefully this will help his red skin around the stoma. Here is a picture of the set I ordered for Noah - they are fun and colourful!
Pantless at Oma's house due to a med port incident! I quickly changed the port but the pants were done for. You can see Noah's muscle tissue removal on his upper thigh - nasty scar....but the fundo scars on his tummy are pretty hard to find now.
And now, due to popular demand at church this morning...a bum scooting video!
Yeah...so happy to hear that Noah is handing his bolus feeds during the day. That is a huge step and it sounds like he's doing well with it. I'm curious as to what you feed Noah through his tube? We tried getting Allie off the night time pump and she failed. She vomited a lot because she couldn't handle all the milk during the day so we are now back to night time feeds. We feed Allie Neocate Junior and she get's 4 bolus feeds a day with 4 oz each. If we give her more than 4 oz at a time, she vomits. So, from my perspective, Noah is doing wonderful with 6 (?)oz at each feeding - yeah Noah!! I bet you and Noah are really enjoying not using the pump at night. I'm so happy for you guys.ReplyDelete
I love his video - his scoot is adorable!!! He get's around really well that way. Thanks for sharing, I cannot stop smiling!
Keep up the great work!!
I am so happy you got the bum scooting on video! It is by far the cutest thing ever and I think it could win you some money on America's Funniest Home Videos! :)ReplyDelete
Noah is on Neocate Infant, concentrated to .8, taking 1200ml a day. I am certain Noah would be vomiting with the bolus if not for the fundoplication. He does still retch often during the day so all is not comfortable for him but he is tolerating the volume okay. It means a q-2hour for feeds though so he is still spending a lot of time doing feeds.
Thanks for your encouragement, we were still doing night feeds at Q3 when he was 6 months (not continuous, but gravity via bag, so we had to be up with him during each night feed). So this is really a big change for us. We are still not getting out much but it is a change for the good.
I'm so sorry to hear your challenges with corn allergy - that is a challenging one since corn product is in sooo many foods. I also understand your own wonderings if the test was a false positive. I hope you are able to sort it out with your home testing system. I'm so glad Allie is not fighting her day time feeds as much and she is doing okay on her night tube - it isn't much rest for anyone.
I think of you and Allie and Chloe often, say a prayer daily and am thankful for the technology that connects us! Have you given more thought to blenderized diet? We are starting to do more research but I know our Ped. and dietitian will fight us on that. So its Pediasure first to see if he can tolerate milk and if not, I think my next step is blenderized.
Have a good day!