Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

We failed our weight check again and dipe count is down!!!

Posted by on Jan. 25, 2010 at 10:26 PM
  • 21 Replies

Weight check again today for Sophie and she is down an ounce and down to only 4 dipes today.  I am doing all I can possibly do and I am simply at a loss.  I pump and nurse and use the SNS around the clock.  I wake her for feedings and I see the milk going into her body.  She is swallowing the milk and I see the empty SNS container.  I know she is getting milk but what is going on.  She goes up, then down, then up, and now back down again.  I need to get her weight to stabilize and I don't know what to do. 

Some of you may not remember what all is going on.  In a nutshell, I have twins who are almost 5 months now.  One twin, Chloe, is a super chunky monkey and a champion nurser.  Her twin sister, Sophie, has had trouble since the beginning and has health issues to top it off.  Her little heart was working too hard at nursing for a full feed so I started using an SNS at the advice of a great mom (Tabi-Cat).  This really seems to help and her cardiologist and pediatrician are pleased with the way she is feeding, because a bottle also exhausted her and when she tried to eat from the bottle her bp would actually rise because she would get frustrated.  She also has a preliminary diagnosis of CP which I am told from the nuerologist can cause weak suck which just adds to our feeding troubles.  Anyway, I feed with the SNS every 2 hours during the day and every 3 at night.  I also allow her to comfort nurse as often as she wants.  I had started doing 2-3 direct feeds per day but stopped and went strictly with the SNS for all feeds when her diaper count dropped to 5 and now today it was 4. 

by on Jan. 25, 2010 at 10:26 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
ajswenson
by on Jan. 25, 2010 at 10:28 PM

No idea...bump

gdiamante
by Gina on Jan. 25, 2010 at 11:26 PM

Heather, I'm at a loss. You've been doing everything possible and I can't think of another thing.

nessy1980
by on Jan. 25, 2010 at 11:33 PM

If I was in your shoes what I would do is feed her baby food and breast milk. My dd was formula fed and had a weight problem. Some babies are just small mommas. Ask the doctor to please let you feed your dd solids, I would do it anyway but thats how I am. As for the wet diapers I would just keep offering the breast as much as possible. Good luck 

mommawhite08
by on Jan. 25, 2010 at 11:35 PM

what a hard situation!  are there metabolic tests they can do?  Also, if she's actually eating enough, not having enough diapers, and not gaining weight.... where's it going?  Does she sweat?  I know most babies her age don't but I'm just wondering where all the liquid is going, KWIM?  I hope you get some answers soon!

lifetimelove
by on Jan. 26, 2010 at 1:42 AM

Oh, this is the LAST thing you want to do with a baby with these kinds of problems.  If she has a weak suck then she probably will gag and possibly choke and aspirate on solid food, assuming the baby would let it get past the tongue (which is doubtful).  My daughter, who had some similar issues, wasn't even CLOSE to being ready for solid food until eight months, and it took 2 weeks for her to even let the food get past the tip of her tongue.  Not to mention that solid food has less calories than breastmilk or formula.

Heather, I'm at a loss too.  I SO understand your frustration.  I've been through 17 months of wondering how she can nurse, and I KNOW she's getting milk, and still not gain weight.  I can't tell you how many times I wished I had some way of seeing everything come from my breast, watch it go into her body and where the heck it goes. 

Have they talked about doing a G-tube?  I really wish that Brianna would have gotten one when she was 4/5 months old.  I would have been able to nurse her without constantly stressing about what was happening.  Brianna gets hers in 11 days, about a year after she should have gotten one.  And I am SO happy, strangely enough.  I'm ready to nurse her without the constant worries that you are describing.

Sometimes you can do everything right, and it's just not enough.  Honestly, with her probably having CP and having a weak suck, bottle feeding probably isn't going to cut it either.  If I have one piece of advice, don't let them continue passing off the weight concerns by "trying" one thing after another.  I'm not going to say "go get a g-tube!" but I definately think you should talk to your doctor about it.  I'd rather you not be in the position that I am one year later.

Feel free to talk to me about it anytime.  Brianna has her surgery on the 5th, and I have no problem talking to you about how everything goes.

Quoting nessy1980:

If I was in your shoes what I would do is feed her baby food and breast milk. My dd was formula fed and had a weight problem. Some babies are just small mommas. Ask the doctor to please let you feed your dd solids, I would do it anyway but thats how I am. As for the wet diapers I would just keep offering the breast as much as possible. Good luck 


Have a child with special needs?  Don't have a diagnosis?  Come join other moms of special needs children without a diagnosis at my group:


www.cafemom.com/group/undiagnosed


 


kristinlimon
by on Jan. 26, 2010 at 5:12 AM

There may be something that you can't physically see that is causing her to burn more calories than she is taking in. Press for testing. A girl in one of my myspace forums little boy was burning so many extra calories that at 5 months was below his birth weight. She was taking him to the drs constantly and they weren't giving her answers at all. Come to find out that the hole in which he was breathing through was smaller than a pin whole so he was burnign tons of calories just to breathe. She took him to a different er than she had been and that was related to her and got answers. They ended up doing surgery on the little boy and giving him a feeding tube before they did the surgery. He's already up in just over a day to higher than birth weight. 

I'm hoping its a simple "fix" whatever is wrong with your little girl. But press for testing. There must be something you can't physically see causing it. I'll be keeping your little girl in my thoughts and prayers.

mykids03
by on Jan. 26, 2010 at 6:03 AM

j am so sorry for your worry. im new to this story about your twins so i had a few questions. you said that shes down an ounce from her last check in. how much was her previous weight and when was her last doctors appt. basically has fast did she drop the weight. umm also you said the other baby ischunky and healthy. does she nurse as well. if so try feeding the smaller twin first and longest if she will tolarate it. that way she will be able to get a faster flow and some hind milk as well. for the calories. i know my little cousin had her mother feed her from a tube taped to her finger hooked to a suringe. her sucking was not strong either. also like the other poster said maybe its something goung on that you cant see. keep the doctors on her. dont let them give up until you know what is going on with your baby. i dont know what your beliefs are ut i will pray that god strengthens her to get well. also you to keep fighting for an answer. god is a better doctor than any of us could ever be. have faith he will heal her from whatever ails. and please excuse all the typos im doing this from my phone 

Heather881029
by on Jan. 26, 2010 at 7:55 AM

Baby food is lower in calories than breastmilk so I am doubting that will solve our problem.  Plus she has had trouble just swallowing milk so I don't think that she is any where near ready for solid food.  Thank you for the suggestion.

Quoting nessy1980:

If I was in your shoes what I would do is feed her baby food and breast milk. My dd was formula fed and had a weight problem. Some babies are just small mommas. Ask the doctor to please let you feed your dd solids, I would do it anyway but thats how I am. As for the wet diapers I would just keep offering the breast as much as possible. Good luck 


Heather881029
by on Jan. 26, 2010 at 7:56 AM

She is having blood panels done to check for a huge variety of problems.  We will not have most of the results for 2 weeks and we have to see the dr. again to get the results of that.

Quoting mommawhite08:

what a hard situation!  are there metabolic tests they can do?  Also, if she's actually eating enough, not having enough diapers, and not gaining weight.... where's it going?  Does she sweat?  I know most babies her age don't but I'm just wondering where all the liquid is going, KWIM?  I hope you get some answers soon!


Heather881029
by on Jan. 26, 2010 at 8:01 AM

Thank you so much for everything.  I feel that our daughters may have a few things in common.  I don't intend to start solids for a while because I dont think she could swallow them.  She has had days where she has trouble just swallowing the milk so I dont think she could handle any solids.

We talked G-tube at our appointment yesterday.  Her pediatrician would like for us to have her body scan done first and then talk further.  If she is still up and down with the weight by 6 months then we will go ahead and schedule to have it put in.  Bottle feeding won't cut it at all.  We tried bottle feeding expressed milk several times and she chokes, gets very frustrated, her bp increases, and then she falls asleep from working so hard just to get the milk.  So the cardiologist specifically stated that she was better off at the breast and he loved that I was using the SNS.

Quoting lifetimelove:

Oh, this is the LAST thing you want to do with a baby with these kinds of problems.  If she has a weak suck then she probably will gag and possibly choke and aspirate on solid food, assuming the baby would let it get past the tongue (which is doubtful).  My daughter, who had some similar issues, wasn't even CLOSE to being ready for solid food until eight months, and it took 2 weeks for her to even let the food get past the tip of her tongue.  Not to mention that solid food has less calories than breastmilk or formula.

Heather, I'm at a loss too.  I SO understand your frustration.  I've been through 17 months of wondering how she can nurse, and I KNOW she's getting milk, and still not gain weight.  I can't tell you how many times I wished I had some way of seeing everything come from my breast, watch it go into her body and where the heck it goes. 

Have they talked about doing a G-tube?  I really wish that Brianna would have gotten one when she was 4/5 months old.  I would have been able to nurse her without constantly stressing about what was happening.  Brianna gets hers in 11 days, about a year after she should have gotten one.  And I am SO happy, strangely enough.  I'm ready to nurse her without the constant worries that you are describing.

Sometimes you can do everything right, and it's just not enough.  Honestly, with her probably having CP and having a weak suck, bottle feeding probably isn't going to cut it either.  If I have one piece of advice, don't let them continue passing off the weight concerns by "trying" one thing after another.  I'm not going to say "go get a g-tube!" but I definately think you should talk to your doctor about it.  I'd rather you not be in the position that I am one year later.

Feel free to talk to me about it anytime.  Brianna has her surgery on the 5th, and I have no problem talking to you about how everything goes.

Quoting nessy1980:

If I was in your shoes what I would do is feed her baby food and breast milk. My dd was formula fed and had a weight problem. Some babies are just small mommas. Ask the doctor to please let you feed your dd solids, I would do it anyway but thats how I am. As for the wet diapers I would just keep offering the breast as much as possible. Good luck 



Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)