Hi guys long time no talk,
Well we are finally home from seattle!!! 10 days later and going for broke trying to fix her. But we got her scoped and her flap SUCKS!!!!!!! So we knew that but they looked and said it still is no good at all. Then they did her pressure in her tummy and that was poor also. They wanted her at a 25 and she was only at a 12. So the amount she can hold is not enough. I am bummed but in a strange way I am glad to know this for all the creepy docs that tell us she shouldnt be vomiting in her sleep and not when she coughs. So I was right and they were just very closed minded. They did take some blood to do some metabolic testing because of the stinky baby problem when they tried the peptamen jr. So they kept her on the neocate and are trying to wean her over to the neocate one. So I hope she does well. Any ideas on how to up her boulses? They want to try to get her on a schude. on boulses 5 times a day but she cant tolerate anything of any amount and I am stuck. So I would love to hear from you guys for ideas. Thanks for support Beth:smt109

Wow! Most of that is over my head....

Just glad to hear that you are back and that you got some answers. Hope the rest of the tests come out well too!

Hmmm, Beth what are Boulses?

I am glad to hear that you finally got the answered that were needed. I know that you wish they were different but now you know what you are up against.

I have had docs like yours in the past telling me that I was crazy when Justin and Brandon were at their worst and the things that they had going wrong were my fault not. I would take the test results to eachone and say see I knew that I was right.

I wish I had answers for you to increase her bolus's but Justin is fed overnight because he cant tolerated bolus feeds. When Brandon was on feeds we did three during the day and the rest over night. I do hope that you can increase her feeds.

Justin is on neocate one and has been now for the past five years and has done well on it. I hope that the transition goes well.


Melanie

I wish I had advice for you as to how to increase bolus feeds, but we are in the same boat--Tucker cannot tolerate bolus...therefore he's on continuous drip. I'm glad you got some answers. How are they planning on "fixing" the issues with her pressure?

To answer the question "what is a boulus?" It is a one time feed if I am not mistaken! I did a lot of reading on tube feeds because we almost got one, but when all was said and done--we didn't! So you could do the one time feed of say 6 ounces at a faster rate through the tube-a boulus- or you can do a steady slow drip which usually consists of all day or all night or both depending on the circumstances.

Am I right??

Hi Beth,
We very slowly increased Larissa's feeds over a period of about 10 months. (So real slow). We started at feeds of 50ml (she would puke if we put 60), then we put it to 55ml for about a week, then 60ml for a week and so forth. It was slow and gruelling, but we have her up to 200ml per feed now and climbing. On a good day, we can get the 200ml in plus 30ml of water and sometimes a bit of oral feed. I never thought we would get the quantity up, but it did slowly as she grew. We had a huge struggle to get over the 150ml mark, that took several months.

I kept her on 40-45 minute gravity feeds (no pump) until very recently, now she can tolerate a 200ml feed given in a bolus over about 2 minutes, again on most days. We gravity feed for convenience at meal times, so our hands are free, but if she is asleep, then she gets a bolus, cause we moved to a bed from a crib, and I am terrified she will get confused with the the bag line. Anyway that is what we did.

Hope this helps.

Pamela

Thank you soooo much Pam!! I will certainly try doing that. Its sooo hard to do this all the time. Because Emily is on 30 neocate every time she pukes it stains our floor. Plus just normal puking it is no fun to turn the rate up once she get used to it. But know knowing it can be done I am all in for it. Soryy it took so bloody long to get back things are crazy around here. I think every time things will mellow out it hits the fan harder. Thank you so much again I will let you know how it goes. Beth