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Might have to start tube feeding and I'm freaking out


Forum: FTT and Weight Gain Issues

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  #1  
August 19th, 2007, 07:25 PM
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Ok, we met with a nutritionist on Saturday and she suggested a feeding tube for Sarah. She only takes in 3/4 of the liquid she needs per day for maintenance liquids. She's 12 weeks old this week. She also does not take in enough calories per day even though we're giving more concentrated formula.
Anyway...please hold my hand here. I'm a nervous wreck. We talk to her pediatrician tomorrow (Monday) afternoon to see what she says.
I looked at the tube feeding area, but there's not a lot there right now. I read the success stories and it makes me feel a little better, but a bit scared too.
Please, tell me what to expect if we go this route. We're expecting she'll be admitted to the hospital? Is this what you had to do? For how long? It sounds like from the success stories that you eventually do this on your own at home? My hubby and I work full time - how do you do daycare? Does the tube stay in all day long? What's the different tube types I see mentioned (ng, g, etc)? I'm so upset and so nervous for tomorrow. I know I've put down a lot of questions here - feel free to just tell me whatever about tube feeding..... Just hold my hand and tell me it will be ok....
Thanks...
Xty
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  #2  
August 19th, 2007, 08:10 PM
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Hugs, I'm soo sorry you guys are going through this. I don't know anything about tube feeding, but one of the former co-hosts here knows a bunch. I'll PM her (in case she doesn't see this) and ask her to either PM you or reply to your post. I know she was apprehensive and nervous at first too, but it really really helped her daughter. I'm sure it's really scary but I bet it'll be worth in in the long run. HUGS, again. Post here when ever you feel like *talking*, someone is always here to listen.
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  #3  
August 20th, 2007, 05:13 AM
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I can certainly understand you being nervous about that. I have no answers for you, unfortunately. I'm sure it will help your daughter out tremendously, though. Good luck!
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  #4  
August 20th, 2007, 06:31 PM
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((hugs)) I'm going to shoot you a PM
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  #5  
August 20th, 2007, 07:13 PM
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thanks so much for your help, courtney!!
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  #6  
August 21st, 2007, 06:28 AM
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Thanks everyone! We met with her ped yesterday and she's not quite ready to jump to the feeding tube yet. She wants to check her bloodwork and urine tests again - haven't done that since she was hospitalized at 5 weeks old and she's now 12 weeks old today. She wants to see if the tests show that she really is dehydrated and if it's effecting her - things like kidneys, etc. Plus we already had an appt with our gastroentologist planned for today, so she wants to see what he thinks before she decides anything as major as a feeding tube. She is smart too - she wrote up the order for the bloodwork but said to wait to get it done in case the GI doc wants to add anything on to it - that way we only have to have bloodwork done on her once. We put the pee collection bag on her last night to try to get the urine sample but it leaked (they don't work too well on girls) plus she only would drink one ounce before bed and decided to sleep through the night for only the second time in her life. Sigh. I wanted her to drink lots so she'd pee lots! So she's at daycare now until noon with another pee bag on and we told them not to change her. So we'll see.
Sarah's a strange case of FTT. She's not like most FTT babies - she actually weighs a lot. She's 11 pounds 12 ounces right now. Her issue is that she went from the 80% on the growth curve down as far as the 40%. FTT can be when the baby doesn't weigh enough, but it can also be when a baby drops two major growth curves - in Sarah's case she went past the 75% and the 50%. Her issue is she will only drink 10-14 ounces a day and she should be doing 28 ounces or so based on her size. So we concentrate her formula. But even doing that she barely takes in enough calories and often doesn't take in enough water. We're actually not sure how she's gaining weight at all - we joke that she and her 20 month old brother get up in the middle of the night and eat cookies together or something. Even her ped doesn't get it. She vomits too, but if she was a healthy baby and eating the 28 ounces a day she should the amount she vomits wouldn't be bad - it's 1-3 times a day and 1-3 ounces each time. But since she hardly takes enough in, each ounce vomited really matters. No one so far can tell us why she won't eat enough or why she vomits. They suspect acid reflux/GERD but we've been treating her with different meds for that since she was 5 weeks old and so far no real improvement. So I have my doubts about that. It's so very very very frustrating. We track every 1/4 ounce she drinks and vomits and how often she pees and poops and what meds she's on when and what doc she saw what day and and and. And since she looks like a healthy happy baby, friends and family are constantly trying to tell us we're worrying over nothing. So what if she doesn't gain weight and sometimes loses weight? They do the same thing. Grrrrrr... We have to keep telling them it's not the same with a baby - they are supposed to grow every day - and if there was nothing to worry about why do the docs keep talking about hospitalizing her again and make us see all these specialists and come in for weight checks once or twice a week?
Anyway, that's my story. Sorry it got kinda long there! Hopefully we'll know more after today's appt with the GI doc or at least by tomorrow when our ped is back and the lab work is back. I'll update when we find something out. I'm still hoping we won't have to do the feeding tube, but also very accepting if we do - I just want her to thrive!!!
Thanks everyone.
- Xty
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  #7  
August 21st, 2007, 07:36 AM
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Sounds good that your docs are taking it one step at a time. She sounds soooo similar to my niece, Brooke, who is also 12wks old. I hope that you get some answers soon. I know with my son they were never able to find a reason for him to not gain weight other than lack of appetite. HUGS, please let us know how the tests and appts go.
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  #8  
August 21st, 2007, 08:01 AM
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Courtney/OceanChild - I just wanted to let you know I got your PM and I tried to PM you back but I'm not sure if it went through or not (and if you got the message three times I'm so sorry!). Stinky internet!!! But thank you so very very very very much for all you wrote. It was all very helpful and I'm going to have my hubby read it tonight when I get home.

Lisa - so your child has FTT and now your neice Brooke does too? Does this run in families or something? Sarah's the 10th grandchild on my hubby's side and no issues there, but my only sibling hasn't had kids yet - I hope he won't have this issue when he starts (he just got engaged last month!). What do the docs think is wrong with Brooke? Any ideas on her?

Thanks everyone! I'll update after we hear more. The appt is in 2 hours and I'm getting more and more nervous as time goes on...
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  #9  
August 21st, 2007, 08:28 AM
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I'm sure your appt will be fine. I'm anxious to hear how it goes.

Brandon was FTT but has been cleared for several months now...he does still have issue gaining weight. My nephew also was FTT at the same time Brandon was (Brooke's brother) and, yes, now Brooke it too. She's 12wks and only weighs about 8.5lbs, so her issue is a bit different, but she's throwing up EVERYTHING she eats. She's on reflux meds and just last week she had a u/s done to see if she has any blockages (she doesn't) so now they are to more tests. Acutally, Brooke has a GI doc appt today so I'm anxious to see what he suggests to do now, I'll let you know. These are my niece and nephew on my husband's side of the family. My brother has a son that is HUGE by comparison to Brandon. I'm pg with my second and my sister is pg with her first (both due in Dec) so we'll see how these next kids fair. I've had about 3 cousins with FTT as well, so it does run a bit in the family.
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  #10  
August 21st, 2007, 08:55 AM
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That's really interesting (but sad!) that it might run in families. Hopefully all will be fine with the baby you are carrying now - my 20 month old son never had any issues with FTT. I hope your sister's upcoming baby will be fine too - how fun for you to both have babies due in the same month! What a hard time your family has had with so many FTT issues. I sure hope they can find something to help Brooke.
- Xty




Quote:
I'm sure your appt will be fine. I'm anxious to hear how it goes.

Brandon was FTT but has been cleared for several months now...he does still have issue gaining weight. My nephew also was FTT at the same time Brandon was (Brooke's brother) and, yes, now Brooke it too. She's 12wks and only weighs about 8.5lbs, so her issue is a bit different, but she's throwing up EVERYTHING she eats. She's on reflux meds and just last week she had a u/s done to see if she has any blockages (she doesn't) so now they are to more tests. Acutally, Brooke has a GI doc appt today so I'm anxious to see what he suggests to do now, I'll let you know. These are my niece and nephew on my husband's side of the family. My brother has a son that is HUGE by comparison to Brandon. I'm pg with my second and my sister is pg with her first (both due in Dec) so we'll see how these next kids fair. I've had about 3 cousins with FTT as well, so it does run a bit in the family.[/b]
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  #11  
August 29th, 2007, 01:15 PM
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Sorry for not updating sooner, but things are so crazy! So the nutritionist had said we needed a feeding tube when we met with her on Sat. Met with our ped on Tuesday and she wasn't too sure about that and ordered blood work and urine tests to see if Sarah really was not getting enough water like the nutritionist said. She wanted to see what the GI doc on Wed would say too. So we met with him and he said she's not even failure to thrive anymore! Eh? She gets the right amount of calories and the right amount of water if you add in the karo syrup we'd been putting in her bottles. The syrup actually breaks down in the intestines into something and water. So that's where she gets the rest of her water. We were so stunned and sooooooo very mad at the nutritionist. Anyway, the GI doc said to try reducing the concentration of her formula to see if she will increase the volume - her body will only take in so many calories a day and once it gets it all she stops eating he said. So if we reduce the number of calories back to normal, then she should start to eat more and more volume. So we're doing it gradually. She lost an ounce since we saw him last week, which was upsetting, but not horrible. We'll keep trying and see what happens in another week before we decide anything. Its just so weird that she went from supposedly needing a feeding tube to supposedly being completely normal and just needing less calories per ounce of fluid. Good, but weird. I actually felt very angry for a few days about it. But now I'm just happy that she's ok! And hoping that it's true (but not completely sure yet). I think she might be taking in a little more volume now, but it's too early to tell. So we'll see. Thanks so much for being there for me when I was freaking out. It really helped to read all of your responses. I'm not sure if we're FTT anymore or not, time will tell. I sure hope all your little ones are doing ok today and will no longer be FTT soon too!
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  #12  
August 29th, 2007, 07:16 PM
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well, that's great news!! kinda weird on the differing opinions though, how frustrating! please keep us updated on her progress.

my son isn't FTT anymore either (yay) and hasn't been for a few months. just a reminder that we are also a weight gaining issues forum too, so don't think you need to be leaving us
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  #13  
September 3rd, 2007, 02:57 PM
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New to the board! My baby has been in the nicu since birth. He has mostly been fed thru the NG tube... they are wanting to do a swallow study and possibily put in a g-tube! (they wont send babies home w/ an ng tube)
He has FTT and long list of other complications.. (right now they don't know what's wrong with him and he's at the children's hospital in little rock...though we might be discharged to another hospital soon)
Anyhow... They expect him to take a 70ml bottle in 20 minutes... The problem is he sleeps thru most of his feeds... and he has low tone so he can't suck real hard... its so frustrating!
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  #14  
September 3rd, 2007, 07:47 PM
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Hi, Melly. Welcome to the board. Your little boy is adorable! Is his middle name Kelly or his last? One of my neighbors growing up was named Logan Kelley (first & last names). Was he a full term baby? Looks like he was born at a good weight! I had lots of trouble breastfeeding my son cause he wouldn't latch on and his sucking was not very good (even on bottles), somehow they just learn, I guess. With my next son, Jack, I'll be pumping or going straight to formula as I'm freaked out about how much he'll be able to take in having been down this road before. Please keep us posted on Logan's progress!
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  #15  
September 4th, 2007, 05:49 AM
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I hope they can find out what's going on with Logan soon! When is the swallow study? Around here the wait is forever - we have one scheduled in October that we scheduled almost a month ago now. Geesh. But our baby isn't in the hospital - hopefully since yours is you will get in sooner? Anyway, welcome to the board and I sure hope they can help Logan soon!
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