His thoughts are similar to mine, Ellie is little and will always be little, and its hard to know what weight she should be because of WHS. That is not the problem. The problem is her weight loss. He went into detail about a Nasal Gastric tube, about the pro's & con's associated with this, and it really shed some light on this path, if we have to go down it.
At the end of the day a NG tube is only going to help Ellie put on weight if this is something that she is struggling with, and in turn this is only going to make her stronger. It also takes some of the pressure of Luke and I, which on a daily basis we are constantly stressing about what Ellie is or isnt eating, how much milk she is getting and how many calories we are getting into her. (which at the moment I am stressing about) Last night for dinner I actually gave Ellie cheescake and custard for dinner, just to fatten her up... She LOVED it!!!
The NG tube feeding is also run how we want to run it, so if we still wanted to feed Ellie 3 meals a day and use the NG tube as a back up to give her more, than this is ok too. We dont have to soley rely on the NG tube for all her feeding. This I feel would work against us, considering that Ellie is not the greatest eater already, I think she would get used to the NG tube, and if it was only short term, then we would have problems feeding her normaly latter on down the track.
I also discussed pedisure, and giving this to Ellie instead of her higher calorie formula and adding it to her food... this is something that needs to be discussed with her dietician, so am waiting to hear back from her
Today Ellie also had a blood test to check if she is deficiant in any vitamins or nutirients. Considering Ellies diet mainly consists of weetbeix, cream, custard, banana, milk and the odd small amount of lasagne or tuna mornay, we need to ensure because of the lack of variety, fruit, vegies etc that this is not having a effect on her. We get these results back Friday. I also think her pead was checking her thyroid function aswell, to make sure this has nothing to do with her weight loss.
So... I dont feel that we have answers regarding Ellies weight loss, but I do feel a bit clearer & positive about the road ahead if she keeps loosing weight, and what would be required.
The plan from here is that we will continue to feed Ellie whatever she will eat, and if that is custard so be it... no one died from eating to much custard. We will continue to get her weighed weekly and be in regular contact with her peadiatrician.
I really do hope that Ellie goes up from here and that a NG tube is not needed, but at the end of the day we just want what is best for her.
Glad to hear you are feeling a little better about the NG Tube after your talk with Paed.
ReplyDeleteYour right, at the end of the day all that matters is Ellie's best interests and if that involves more custard or NG Tube so be it!
You have a great perspective, Mel. And you are right. My OT often tells me that when babies get NG tubes or G tubes that truly need them it changes life for the better for everyone involved in their care. Yes there is extra work associated with keeping it clean and things like that but there is also less pressure on the parents to feed, more time to bond and simply play with the baby and a nutrition which is so good for development!!!
ReplyDeleteI know that no one ever wants to give in to the tube feeding. But, it really can make such a positive difference.
I will keep praying that Ellie snaps out of it and starts chowing down on her food and her bottles. :)
And you are right - no one ever died from too much custard. :)
Oh Melissa, how much I can relate to you!! I know you don't want to have to do the feeding tube. I didn't want to either. But it is not the end of oral feedings, like the doctor said. Riley has definitely backed off of oral feedings, but we are still doing them 3 times a day. We do not see the g-tube as a permanent part of her, which is great. I used to cry everyday when she wasn't eating. I was so stressed out and placed all the blame on myself. Now that Riley is getting what she needs, we are ALL so much happier. We can focus on so many other areas of development. Since January 20, Riley has gained almost 4 lbs, which she would never be able to do otherwise. I think you have a good attitude about it. Send me an e-mail if you want to talk any more about it.
ReplyDeleteMelissa, I am only starting to understand what you are going through. My thoughts and good wishes are with you and Ellie-- keep the custard coming until you are told otherwise. All the best-- xo.
ReplyDeleteStay strong and positive hun - Champers is coming....
ReplyDeletexxx
Melissa, our Rachael grew very slowly....was always way below the charts.....
ReplyDeleteThe only concern I have (and I don't know) is: by going with the tube, would Ellie get lazy with her eating, chewing etc, and therfore not develop this skill properly....
A parents, whatever you decide, it will be the best decision for you all...Good luck
Hello Anonymous, Just curious what were the reasons for Rachel growing slowly? Growing slowly and being below the charts for weight doesnt bother me. Its the weight loss that does, I am trying my hardest for this not to continue. More weight is only going to make Ellie stronger.
ReplyDeleteI do agree with you that the tube could make Ellie lazy, which is why if we did HAVE to resort to the tube, I would still want to feed Ellie first and then tube feed as a top up.... I still have uncertaintys about this all, and I dont know if they would ever go away
Thanks for your feedback... appreciate it