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Please help with next steps - breastfeeding at major risk - Page 24

post #461 of 625
Thread Starter 
Another day down. It isn't perfect, but doable. And not getting worse at all, from what I can tell. Still some things to figure out. She nursed this evening. Finished and milk dribbled out so I know she was fillin up. Then she wwould not sleep. Had been up for 8 hrs. She is such a sleep fighter. Acted like she wanted to eat. I tried nursing again and she was so uncomfortable and wiggling a mess all over, pulling off, hollerin. I gave her 1 oz of Neocate in a bottle and she drank it while perfectly still and went to sleep.

But we'll get there. I have no guilt about a couple oz out of a bottle to keep the sanity. Heck, a week ago I didn't think I'd nurse again. Each day feels closer to it feeling permanent. The LC here told me to see an OT if the odd behaviors continue. She actually sees the same Dr in Nebraska for allergies for her 14 month old. Small world.

And my dropped milk supply that spawned this panicked last attempt to nurse? Probably just hormones as AF showed today. For the first time since Jan 2007, lol. Ellie was first PP egg after my almost 3 year old.

And I got a sassy new haircut tonight. Not sure why that is relevant. But it feels good too, lol.
post #462 of 625
Huh... I considered mentioning OT for her. I wonder if it would help.

Glad you're making time to do something fun for yourself Hope you love your new haircut!
post #463 of 625

I'm back to internet access, albeit slow - and so happy to see that all the new pages of discussion were *good* news!

I agree that you will want to wait awhile before deciding whether you want to drop the med(s) or add a food into your diet - I'd give it a couple weeks, personally, of a relatively baseline time, before making a change. Unless you suspect one of the drugs is also negatively impacting her, personally, I'd focus on adding some more foods into your diet when you *are* ready for a challenge - rather than mess with meds for a bit.

I suspect that your hunch about DGE is correct - that many of these symptoms might have resulted directly from that. I'll be curious to hear how her weight gain progresses now that she's back to mostly-breastmilk - I hope it goes up! And agree that an OT (or speech pathologist) might have some more answers about the latch/gulping/flailing.

Are you still looking for a better Ped GI? I'm not sure your current 'gem' is going to order any tests for DGE if he sees improvement elsewhere. Even though a confirmatory diagnosis would really be helpful for you, I think.

But mostly - Congratulations! You've worked so hard for this, I'm glad that things are coming together for you and Ellie!
post #464 of 625
Originally Posted by DeChRi View Post
And I got a sassy new haircut tonight. Not sure why that is relevant. But it feels good too, lol.
Let me first say:

I always seem to want to get a new hairstyle when I have fundamentally changed something inside myself. It's like I want something outside to reflect the changes inside. So the haircut IS relevant. I think it's reflecting the fact that you now feel competent and capable again!

I think you've figured out a big part of the puzzle since you now know that HOW you nurse her is very important.

And, BTW, when I was nursing it would take sometimes a day or two for my supply to catch up with DS's demands. And then it would come on in spades. Somehow pumping only held my supply steady, if that. But his nursing would really increase the supply. Sounds kinda like what you've got going on.
post #465 of 625
Thread Starter 
Fast note..she Just fell asleep nursing for the first time since she was 3 weeks old. Hooray!!
post #466 of 625
post #467 of 625
Originally Posted by DeChRi View Post
Fast note..she Just fell asleep nursing for the first time since she was 3 weeks old. Hooray!!

post #468 of 625
Thread Starter 
This is either the fall out or she is constipated. She turned on a dime and has been screaming for 3 hrs, in obvious lower gut pain. This is day 7 nursing,day 5 of most completely breastmilk. She also hasn't pooped in 6 days. She has gone 5 before and passed one normally. DH just ran for glycerine suppository per dr orders. Hoping that gets her kinks out and this isn't the decline.
post #469 of 625
She started getting constipated when you started the Erythromycin, right? Antibiotics can cause all kinds of gut die off and stuff - all of which constipate my son bigtime. Likely she'll feel a lot better after she poops, but if the constipation repeats itself, I'd try taking the Erythromycin out and see what happens.
post #470 of 625
Thread Starter 
Yeah, I'm not thinkin she's constipated. She pooped but it was nothing note worthy. She is in obvious and significant pain and it SUCKS. It's really bad. I'm not sure how far I go until I punt. The eryth does help significantly with her reflux and moving food thru. She's been on it 2 weeks now. I just dunno. But I can hear her stomach gut and it sounds horrible.
post #471 of 625
abdominal massage?
post #472 of 625
Thread Starter 
We went in warm tub, ab massage, outside, etc, etc and she is still crying. Hours now. Stiff, stares up at me with these huge eyes that break my heart and I can't help her. DH says stay the course, make sure it isn't a fluke. I'm, of course, flashing back to the 3 months she was like this Every Day and now every time I nurse I nurse I feel like I am hurting her. I just don't know if I can do it. I feel selfish for continuing to do this over and over to her because I so desperately want to breastfeed. Trying to decide if I nurse through the night of bottle up. Right now I just want her happy.
post #473 of 625
post #474 of 625
Thread Starter 
And man, I forget how bad this is. It is so far past "irritable". It's horrible. Her body, crying, mannerisms are like she is being stuck with something sharp somewhere I can't see, and she just stares and me to help and I can't. DH isn't understanding why I'm feeling like I can't nurse her again. He's very scientific...stay the course, know for sure...but man, it breaks every mama heart cell I have.
post #475 of 625
I agree with your DH -- this really could just be a fluke, I'd hate to see you give up because she is having one really bad evening. After everything you've been through to get her nursing again, I think you owe it to yourself & to her to be absolutely sure that nursing is causing the problem. Assuming you didn't change your diet or anything and nothing else (meds, lifting, etc.) has changed, I would keep nursing & see how she's doing tomorrow. If she still seems worse, consider giving her pumped milk before switching back to Neocate. For now, I'd try to focus on the big picture, which is that she's done great for a week on breastmilk (so it's hard to imagine that this one incident is due to nursing). Just my personal thoughts, take them or leave them, either way I'm sending lots of hugs & prayers your way!!!
post #476 of 625
Thread Starter 
It's sooo hard to be rational when she hurts. I haven't slipped on diet at all. Haven't lifted or worked out in 8 days. If something is building up in her system, it should get worse. If not, it should get better. Right now, I just want it to Stop.
post #477 of 625
For now can you give her some gripe water to help with the gas and discomfort? Also, I can't remember if you have tried chiropractic..perhaps something is getting pinched when she nurses? And feeding breastmilk with a bottle might be a good move for now, so you can make sure she doesn't drink too much. Video what she is doing and go see the other pediatric GI doctor ASAP.
post #478 of 625
And if you have to, go back to the neocate for a day to see what happens....I can't imagine what could cause such a problem all of a sudden after 7 days of breastmilk, but going back to half and half or something might help you to feel like you are helping.
post #479 of 625
Thread Starter 
I've tried gripe water & colic calm. No luck. She slept a bit and now woke and has been screaming again. She's had a coupleof similar "episodes" the last day or two, but nothing horrible or long lasting. Now I wonder if it was something building??? She sees a chiro 2-3x week now.

I'm giving her neocate right now. Just because I can't make myself nurse with her so upset. she just doesn't want to. I'll try and nurse her through the night and see what tomorrow brings. Pray for a fluke.
post #480 of 625
Oh honey! I am so sorry! There is nothing worse than a babe in pain who you can't console.

But since my daughter is finally done screaming for the night and I am here in my quiet room thinking rationally (as much as I'm able to anyway ), I'm thinking I agree with the others who say it seems very unlikely that she would go along pretty much fine for 7 days and then all of a sudden go downhill like that simply because of a food allergy or intolerance, or some other unexplained intolerance of your breastmilk. I also can't imagine that she would react to 3 completely different TEDs.

And there is still the thing about her never having skin or poop symptoms (until now with the constipation, that is).

Is there any possibility the pain is somewhere other than her gut? You say you can hear her gut. Is it possible for you to describe the sound to us? (I'm not sure if it would help, but just trying to think scientifically) Is she refluxing more too?

How soon are you going to the OT? One thing you might try is asking the OT if she will teach you the brushing protocol. My daughter finds it very relaxing when something is physically bothering her. The jist of it is using a brush to brush up and down with firm force on her arms, back, and legs (in that order). Then you follow it up with joint compressions and muscle co-contractions. It was designed for kids with sensory issues, but I find when I use it on myself that it is just relaxing and helps draw my nervous system away from focusing on a particular discomfort. Or if the OT might have other strategies for trying to settle her down. Some things to try in the mean time.... bouncing on a ball, swaddling and then wrapping a blanket around her back and gently swinging her in it, deep pressure, joint compressions of the major joints which you can accomplish by placing her feet against your legs with her on the floor and your hands on her shoulders and pushing down on her shoulders rhythmically.

Hopefully you get some sleep tonight and tomorrow it has all passed.
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