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Thread: Felix's Mystery Respiratory Condition

  1. #19
    katanya Guest

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    hmmm..we'll see, I told DP and he's not happy about the lack of food, and I explained we don't want him throwing up with a tube down his throat..anyhow, lets just hope we get some results from the blood tests and we don't ahve to do it



    Christy, I have a feeling Felix's first BB feed is earlier than that (never look at clock) ahh well, we might end up outside playing with the puppies!

  2. #20

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    Katanya I hope you get some answers soon. There is nothing worse than not knowing what is going on. Anyway keep us posted.

  3. #21

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    You might find that you wont need to fast Felix as long seems he is only 8 months. I'm not talking from experience just thinking that a younger baby isn't going to be very happy about missing feeds so they might take that into concideration. Plus if it does come down to needing a G/A ask the anaesthetic person (what are they called? :-k ) if a small breastfeed would be ok just to take the edge off if he gets to bad. Breastmilk is digested pretty fast, usually with in an hour so I can't see why they would refuse this. Plus The chance of vomiting while under G/A is pretty slim, so I've heard anyway. But talk these things over with your Doctor & tell him/ her that you have concerns about fasting etc. I know you probably already know this but you don't get answers with out questions.

    Good Luck & [-o< that it turns out to be something simple.

  4. #22
    katanya Guest

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    I had an appointment with the Paed this morning(gold Coast one not specialist) and he told me all the latest test are normal, which means unless there is something from the cardiologist, the next step will be the brochialoscopy and CT scan, under general.

    Fiona Jill I just saw your reply and yes I have been researching (kelly's mom BFing site) and I talked to the Pead about my concerns today and yes it will only be a 4 hour fast at most which I am MUCH happier with!

    He asked me how I was feeling about things and I said we are trying to take things a step at a time and that we were intially hestitant about the brochiloscopy and lung biopsy and what our fears were about doing the investigation and then coming up for nothing. He said he can understand that but that if it is a slow decline and then if you can get a diagnosis then there might be treatment avaliable to him. He also reassured me that the pead anthetists are VERY qualified and the risks are very low with the procedure and him being under general.

    Felix was weighed and measured and he isn't happy that although he is gaining weight, it is not enough and he has dropped another percentile, he also hasn't grown height wise, so now is not good at all, my appointment with the paed dietician isn't till March, and the paed is trying to get him in sooner. He said if we can't get his weight up soon we are heading for a comp feeding at night (formula fed through a tube nasal gastricaly) this of course will just pose an incrediable threat to our breastfeeding relationship. I feel so upset that after all we have been through and tried we might end up with something SO unnatural like this. I have worked with older children who have tubes and the tube part doesn't bother me but the formula all night does..

    I am feeling upset and like I am failing him again, I don't want to give up breastfeeding, I just want him to get through this without affceting the important parts of our relationship. We also co-sleep and with a nasal gastric feeder(they get hooked up to a machine that pumps the formula) I'm not sure we'd be able to do it, not really sure how a 9 months old baby who rolls all over the bed will either. I just PRAY the dietician will have answers and we don't have to go down this path.

    His breathing is still the same, and was more audiable on the weekend, and I asked the paed when I should worry. He told me to ring his mobile if I feel concerned or bring him to the hospital

    Anyhow that is us at the moment, still waiting. On the positive he is developing normally and pulling himself up on everything ATM and wanting to cruise furniture and hold on while he walks around, he quite exhausting, but it's great to see that he's active!

  5. #23

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    *HUGS* thats awful about the nasogastric tubes!!! I have everything crossed that you don't have to do that!!! I think it would be a terrible thing to put pressure on bf'ing! I could understand them suggesting a comp bottle in the night which would be still yuck, but better to continue co-sleeping than to have to give up both at once!! I hope Felix puts more weight on! And that his breathing settles down too! We will be thinking of you guys!

  6. #24
    katanya Guest

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    You know Christy, no one has even suggested a bottle of formula at night? I just wonder why the nasal gastric is suggested when he practically snacks all night at my breast anyhow! I REALLY want to see a dietician, I feel lost and I want to do the right thing but I REALLY don't want to give up Bfing!

  7. #25

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    I think seeing a dietician or getting more opinions would be a good idea. I just think that the nasal tube would be really drastic? I guess that's my opinion and it would make co-sleeping hard and they often say that babies who eat well, sleep well & vice versa... maybe there's another reason for it, :-k . I know I was told with Matilda to check her breathing with reflux because sometimes it can cause them to aspirate some of what they bring back up into their lungs and cause infections and sometimes even pneumonia so maybe it has something to do with his lungs... but you would think he would explain it.... yuck.

  8. #26
    katanya Guest

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    interesting you say that Christy about the reflux, as Felix was a huge chucker early on(but a happy one) but specialist asked about reflux in the millions of questions, and nothing was said.

    the paed just rang me and we have a dietician appointment next week! Thank god, i have been racking my brains trying to thing what to give him and someone told me they gave their child icecream twice a day with the poly joule added just to boost up the weight..i asked the paed about it and he said to go for it!

  9. #27

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    whew thats good news about the dietician...

  10. #28

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    Katanya sorry to hear all news was not good. I hope you don't have to go down the nasal tube. I'm sure they will try everything before they resort to that.

    I was looking through my Dietician booklet that I was given in regards to feeding a CF baby. I had a look and they also suggest icecream, cream and fullcream custards. It also suggests adding things like cheese sauces or grated cheese to the vegetables. Even bread and butter with peanut butter, jam, honey and cream cheeses.

    It also suggest that when breast feeding that polyjoule syrup or a supplemental formula feed could be a way to boost energy and nutrient intake, if baby is not putting on weight.

    Don't know if that helps, you may have already tried these, thought I would let you know anyway.

    Glad that you were able to get to the dietician next week.

    Good luck with everything and big hugs to you and Felix.

  11. #29
    katanya Guest

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    Lara those ideas are FANTASTIC! I am going to find the full cream custards I think and start on them instead of the baby ones, it's just getting him to eat!!

    Thanks so much for putting the info here it gives me something to start with, as all the paed said was add butter to everything, and cream..well cream goes straight through him and he hardly eats veges..but I already do put everything I can fit into the veges. My current thing is to give him veges with additives or avocado + yogurt etc and then when he gets over it I offer dessert, it works pretty well most weeks.
    We have the poly joule and add that to everything. I might consider a supplimentary feed after we see the dietician, I'm just petrified it'll affect my supply.
    Anyhow I'm feeling much better today, he went out with my Mum and ate a tube of petite mium and a tin of custard and poly joule..and ate yogurt for dinner too..so not bad..

  12. #30

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    Oh Katanya HUGE for you...

    That is pretty scary what they said about the nasal gastric tube, but surely, surely it is a very last resort!

    It sounds like Lara has given you some great food tips there, I will have everything 'ed that Felix has a nice big gain at his next weigh in, and also that his breathing improves as well.

    Thinking of you both...

  13. #31
    mama mel Guest

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    A big from me, too Katanya! I can't imagine how scary this must be for you all.

    I am feeling upset and like I am failing him again, I don't want to give up breastfeeding, I just want him to get through this without affceting the important parts of our relationship.
    Please don't keep doubting yourself! This isn't your fault and I would agree that since you don't know what the full story is yet, that there's no need to stop BFing. I think for comfort and his immunity it'd be the best thing for him until proved otherwise. If they say that supplementing with formula would be the best thing though, I doubt it would have drastic effects on your breastmilk b/c you haven't had problems with supply in the past and you should always be able to have the supply that he needs.

    You're using all the resources you have available to you and doing everything within your power to find out what it is and to do the right thing by him. There's nothing more you can do, please have faith in that and in yourself.

    It's great that you're getting in to see the dietician earlier. I hope you'll get something that will help him put on weight there. Lara left some great tips too, hope some of that helps him.

    My thoughts are with you...

  14. #32

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    Katanya... just a thought

    The Doc probably suggested the NGT overnight to get maximum calorie absorption from the formula.

    They sometimes think it's best to do it without waking the baby up so they don't burn any calories waking and feeding.

    I hope it doesn't come to this, but from what I have gathered about you from your online presence, I know you'll get through it if it does O

  15. #33
    katanya Guest

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    Thanks for your comments everyone, I have been offline for a week due to moving house, and Felix has been REALLY active, he can pull himself up on the loungeroom furniture and cruise around, so now he is probably burning MORE calories *sigh*

    Mel thanks for your reassurance about doubting myself, but logic doesn't weigh much when the paed is telling you your baby is failing to thrive, and you are the one feeding him..of course when I logically think about it, for the first 4 mths he was HUGE and fat and that was purely my milk it doesn't make sense that it would be my fault, but emotionally I feel it is..not rational I know..

    Mistyfying I know that it sounds ideal for him, as he is active during the day but the Paed said it also made them dependant on it too. I just want to make sure there is nothing left to try, I would prefer him to be formula fed the usual way than that.

    I have been doing everything that Iris suggested, we have the polyjoule formula (prescribed by specialist) I make him sandwiches with cream cheese in them, I give him fruit/ premium custard (double the calories) now not the baby ones, icecream, yogurt, veges and butter/cream cheese..he's getting better but not sure if it's going to do what they want it to and catch his weight up..

    He has been sick too so it's been extra hard. *sigh* this food thing is really the hardest thing I have ever done, just getting him to eat!!

    I will consider a night formula feed, but I want to talk to the dietician first, I am scared it will just replace a breast feed and not be addition IYKWIM?

  16. #34

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    Big hugs katanya, for you both,

    This is so hard for you but what ever you do will be the right choice for Felix, ask as many questions as you can and I hope things improve and you find out what you are dealing with soon
    Best wishes Michelle

  17. #35

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    oh katanya *hugs* when are you seeing the dietician?? This week isn't it? Let us know how you go!

  18. #36

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    Katanya I know exactly how you feel. Even tough Alana is putting on weight, the whole food issue stresses me out. Her paed said that all CF parents find the food issue the most stressful thing of the condition. Good luck at the dietician.

    Anyway just know if you need to get stuff out, I'm an understanding ear.

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