Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 5 - Mothering Forums

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Old 08-29-2010, 03:58 PM
 
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Mama,
Wow! I'm impressed with how well you are doing. A diet like your would be so frustrating to keep. I hope you continue to do so well for your LO, but I think we'd all understand if you did more formula than BFing.
Slightly off topic, but I wonder how much of your frustration with the diet the change is related to the physiology of the diet, kinda like you are breaking a caffeine or sugar addiction, IYKWIM? You are a huge amount of protein for your body building career, and now are eating totally differently... I bet that alone is messing with your brain and body chemistry. Please be forgiving of yourself.
I think you are amazing!
~maddymama
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Old 08-29-2010, 04:38 PM - Thread Starter
 
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Totally valid thought! The first week was hell...but ironically I find that my energy, while low, is more stable w/out the caffiene and quicker digesting carbs. You are right on that there is a detox period and it messes with everything. Right now I am eating 2+lbs of turkey/day to get my protein intake in. I can promise it will be a LONG time before I eat it again.

I've also realized how social/family oriented food is. Out to dinner w/ DH, our daily big family breakfasts, baking w/ my older 2 girls, experimental cooking with my 11yo...I really miss the joy of cooking and eating something.

We'll get there though. :-) Good self-realization if nothing else.
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Old 08-29-2010, 10:54 PM - Thread Starter
 
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I nursed her 2x this afternoon & she's now been screaming for 3hrs. I just can't imagine it's That violent of an allergy, after being on the diet. My 2yo is sobbing for me to "plz put that baby down". I thnk I may be done.
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Old 08-29-2010, 10:57 PM
 
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You did an amazing job. You gave it your all -- and then some. I hope moving to formula brings your family back to normalicy.

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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Old 08-29-2010, 11:38 PM - Thread Starter
 
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It's such a head game. I keep thinking..what if the screaming this time was coincidental? What if what if. I'm going to do a couple more formula days, then try nursing one more time, see what happens. But I think I've resigned myself to this not working like I want.

I do think I'll continue pumping several times a day, for a few months as life permits, build a freezer stash and hope to slowly start dropping it in her diet many months down the road as she out grows it.
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Old 08-30-2010, 12:00 AM
 
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It's such a head game. I keep thinking..what if the screaming this time was coincidental? What if what if. I'm going to do a couple more formula days, then try nursing one more time, see what happens. But I think I've resigned myself to this not working like I want.

I do think I'll continue pumping several times a day, for a few months as life permits, build a freezer stash and hope to slowly start dropping it in her diet many months down the road as she out grows it.
It's OK. You know exactly how to keep her happy and healthy. You worked hard and found something that will help her grow and that she can tolerate. This is exactly what formula is for. It's OK. You are a hero!

DS (6.06), DD (10.08), DD (05.11).

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Old 08-30-2010, 12:03 AM
 
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I just want to say how impressed I am with how you've handled this. You are an inspiration. Good work, mama.

Just a question, and more for curiosity than to suggest a "cure" - have you tried giving your baby some soy formula or dairy-based non-elemental formula? It would be interesting to see how she reacts to those.

It's possible, given how little we really know about the constituents of breastmilk, and how the idea of routinely analyzing breastmilk in the same way we do with blood just never occurs to anyone, that instead of containing something that irritates your DD, your milk actually lacks something - some enzyme or trace nutrient that your DD's gut needs to digest milk comfortably. Just a thought. It would be nice if more scientific resources were put towards finding answers for these things.

Postpartum doula & certified breastfeeding educator, mama to an amazing girl (11/05) and a wee little boy (3/13).

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Old 08-30-2010, 12:06 AM
 
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I just read through of all of your posts on here and I have to say, way to go on doing everything you can to get breastmilk in your daughter. That is a battle I hope I never have to experience, hugs to you. Hopefully you will be okay with giving your daughter the formula, because it will be happier and more peaceful for your whole family.

Mama to three

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Old 08-30-2010, 12:28 AM - Thread Starter
 
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I just want to say how impressed I am with how you've handled this. You are an inspiration. Good work, mama.

Just a question, and more for curiosity than to suggest a "cure" - have you tried giving your baby some soy formula or dairy-based non-elemental formula? It would be interesting to see how she reacts to those.

It's possible, given how little we really know about the constituents of breastmilk, and how the idea of routinely analyzing breastmilk in the same way we do with blood just never occurs to anyone, that instead of containing something that irritates your DD, your milk actually lacks something - some enzyme or trace nutrient that your DD's gut needs to digest milk comfortably. Just a thought. It would be nice if more scientific resources were put towards finding answers for these things.
Ok, this is good...why didnt I think of this? I occasionally have this flash of...this totally has to be something off the wall and not a food allergy. Even the specialist agrees that this far in, she should not be having this extreme of reaction.

Here is what throws me:
1) She never has had irregular, green, foamy, bloody stools. If she is SO allergic to something, that 2 bites of that food in a 3 week time of elmination, causes that violent of a reaction like it did today, I cant imagine that there were not bowel symptoms when I was taking it in full quantity.

It just doesnt add up. That is why I cant make myself throw in the towel totally. If I KNEW...had a FOR SURE cause....then I could make a decision.

Trying other formulas is a good idea.
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Old 08-30-2010, 04:41 PM
 
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You're my hero.

New Mom to little G May 16, 2010.
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Old 08-30-2010, 05:01 PM - Thread Starter
 
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Thank you so much. I've decided on one more last ditch effort, given that I just can't put it to bed, not being able to reconcile whether it's allergy or not.

Starting this morning I've been giving only bottles of fresh pumped "clean" breastmilk. Thinking that if it is some wonky thing about the WAY she nurses, that all the LC's and Drs have missed, then we'll know. Because she's always been a wonky nurser, I sometimes feel like she's snorting bm into her nasal cavity, which then makes me wonder if maybe the "congestion" that it was thought was an allergy symptom is really a function of how she nurses?

Grasping @ straws, but really want to turn the last couple stones. She's been sleeping much of the day so I don't have a good read yet.

Depending on the outcome of today's experiment, I'll go a bottle of milk based and/or soy based formula to see what it does, from an allergy standpoint.

I've decided that in the next couple days, I'm going to put it to bed, one way or another.
If it's formula, because we just can't figure it out, ill pump and freeze for a few mnths and hope she can have it later. If she can do bm from bottle, I pump and bottle feed.

Not matter what, after seeing the baby and my 2 yo so very upset yet again, I feel pretty solid that I'm done playing guinea pig with my infant's gut. I hate seeing her in such pain. After 10 weeks of it, I think she's telling me something. Last night in bed, in the middle of the night, I had a bottle of formula, she was all cuddled into me in bed...she had her little cheek resting on my chest gulping the bottle, staring at me in the tiny nightlight light...then she pushes the bottle out, give me a big smile and giggles, which she has never done before. The went right back to the bottle and cuddled into me while she ate and fell asleep. And I realized that no matter what, she'll be just fine. She wants to be happy.

AND my MIL is coming over in an hour and I'm going to get a pedicure. :-).

Onward and upward. I'll update on how this bm in bottle process works.
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Old 08-30-2010, 05:12 PM
 
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Onward and upward. I'll update on how this bm in bottle process works.
I saw this from the main page and don't quite have the time to read back through the whole thread . . .

Have you seen an ENT? (Ear, nose, throat specialist). If the breastmilk in bottle works, you may want to have her checked out for a soft palette or sinus issue. If she has some form of minor deformation, the harder sucking involved in nursing may be resulting in her also pulling down a lot of air or phelgm, both of which can cause major stomach/digestive pain. Whereas a bottle doesn't take as much effort/may not result in that.
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Old 08-30-2010, 10:28 PM - Thread Starter
 
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Cschick - we are seeing an ENT tomorrow, just in case. I'm lucky that my Mom heads the audiology part of an ENT specialty practice, and one of the ENTs has 5 kids and is super kid kind. She called him & he said it could be something like a submucosal cleft palate that is often undiagnosed until age 4-ish. Anyway, he is going to squeeze us in tomorrow morning.

Baby had 4 bottles of breastmilk today. She had one sream fit bad a bit ago, but it could be a fluke. I'm giving it through tomorrow as a test run.
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Old 08-30-2010, 11:29 PM - Thread Starter
 
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Crash and burn. She's been screaming non-stop since my last post. So sad.

Still going to ENT tomorrow. Need to rule that out for peace of mind.
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Old 08-30-2010, 11:34 PM
 
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Yes, a submucous cleft palate or something called velopharyngeal insufficiency (or VPI). Those often aren't diagnosed until a bit older just because they're so hard to physically see, and the symptoms mimic other things.

BUT...even if that is it, I'm not fully convinced that that's ALL, you know? Because you've done near exclusive pumping in the past, and she still had a rough time. But when you replace the breastmilk bottle with HA formula, she does TONS better.

So definitely good to rule out a palatal issue (my son has both a submucous cleft and VPI, so I know about both unfortunately) but beware that it might not be the magic fix you so desperately want.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 08-30-2010, 11:55 PM - Thread Starter
 
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Yes, a submucous cleft palate or something called velopharyngeal insufficiency (or VPI). Those often aren't diagnosed until a bit older just because they're so hard to physically see, and the symptoms mimic other things.

BUT...even if that is it, I'm not fully convinced that that's ALL, you know? Because you've done near exclusive pumping in the past, and she still had a rough time. But when you replace the breastmilk bottle with HA formula, she does TONS better.

So definitely good to rule out a palatal issue (my son has both a submucous cleft and VPI, so I know about both unfortunately) but beware that it might not be the magic fix you so desperately want.
I so want a magic fix. I'm so burnt out. I need to go pump again as I feel a bit like my supply has gone down in the last couple days, plus I didn't pump all last night as I was so tired, but the thought of pumping again right now makes me wanna hurl. DH is suddenly renewed in his desire to keep trying stuff, but those all involve me being up all night, screaming baby and spirit crushed toddler all day. Locked in my bathroom with a finally sleeping baby, crying for the very first time in this parade. DH is wonderful and trying to be a cheerleader, but it isn't taking the same toll on him.
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Old 08-31-2010, 12:27 AM
 
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Last night in bed, in the middle of the night, I had a bottle of formula, she was all cuddled into me in bed...she had her little cheek resting on my chest gulping the bottle, staring at me in the tiny nightlight light...then she pushes the bottle out, give me a big smile and giggles, which she has never done before. The went right back to the bottle and cuddled into me while she ate and fell asleep. And I realized that no matter what, she'll be just fine. She wants to be happy.
If this is the answer, I think it's more than acceptable

You've done a freaking amazing job!!!!!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 08-31-2010, 01:16 AM
 
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Mama, you are AMAZING.

I know this isn't going the way you hoped it would (or the way any of us following your story hoped, either) but you are so strong and tough and inspirational. However this works out, you and your baby are going to be okay.

Science-loving mama to one little guy (11/09).
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Old 08-31-2010, 01:45 AM
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good luck with the ENT. no matter what happens, you are a great mama and that baby is lucky to have someone who is willing to do anything to make her healthy and happy.

January 2011
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Old 08-31-2010, 01:52 AM
 
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Not matter what, after seeing the baby and my 2 yo so very upset yet again, I feel pretty solid that I'm done playing guinea pig with my infant's gut.
This right here. Every time I read that your baby is back to screaming, all I can see in my mind's eye is a poor miserable baby and a poor miserable toddler (not to mention poor miserable mama!). I am so impressed w/ your mission to solve the problem, and it looks like you have: formula. Giving up the dream of breastfeeding just plain sucks 100% You did everything you could & now it is time to enjoy your baby!!!

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Old 08-31-2010, 03:07 AM
 
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Mama, you are AMAZING.

I know this isn't going the way you hoped it would (or the way any of us following your story hoped, either) but you are so strong and tough and inspirational. However this works out, you and your baby are going to be okay.


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Old 08-31-2010, 03:29 AM
 
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I'm so sorry, this is such a difficult road!

I don't think I mentioned this in my earlier post long ago in this thread - but in case it's helpful for you:

With dd1's severe reflux/allergies, our Pediatrician consulted with specialists and they agreed with her, at the point that dd1 was hospitalized, that her allergies and reflux had cascaded together to the point where she couldn't digest any proteins at all. At that point, she was three months old and had gained only a little over a pound since birth (despite good post-weights with the LC after nursing etc. etc., she was getting in adequate breastmilk) --- they had me pump for a month while she was given exclusive Neocate (the only formula she could tolerate). After a month, she had gained well enough and was healthy enough that the Pediatrician told us to try going back to breastmilk. At that point, she was able to tolerate the *very same breastmilk* she hadn't been able to digest a month prior - once back on 100% breastmilk (still on the Big 8 Elimination Diet minus legumes as well) - she gained even better than she had on the Neocate. She was still allergic to dairy/soy/egg/wheat/legumes (outgrew those allergies gradually over the course of the following two years, except the egg which persists) --- but as long as I avoided them, she was fine.

I only share this in case it's something you want to try. And having exclusively pumped while formula-feeding and rebuilding my supply for over a month and then mostly-pumped for quite a bit longer than that --- and recognizing the dietary issues you're already juggling -- it's entirely understandable if you don't want to attempt what I did.

again - I'm so sorry - this is such a difficult road and until someone has walked it, there's no way to understand how awful it is. I wish I could help somehow.

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Old 08-31-2010, 11:39 AM - Thread Starter
 
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I'm so sorry, this is such a difficult road!

I don't think I mentioned this in my earlier post long ago in this thread - but in case it's helpful for you:

With dd1's severe reflux/allergies, our Pediatrician consulted with specialists and they agreed with her, at the point that dd1 was hospitalized, that her allergies and reflux had cascaded together to the point where she couldn't digest any proteins at all. At that point, she was three months old and had gained only a little over a pound since birth (despite good post-weights with the LC after nursing etc. etc., she was getting in adequate breastmilk) --- they had me pump for a month while she was given exclusive Neocate (the only formula she could tolerate). After a month, she had gained well enough and was healthy enough that the Pediatrician told us to try going back to breastmilk. At that point, she was able to tolerate the *very same breastmilk* she hadn't been able to digest a month prior - once back on 100% breastmilk (still on the Big 8 Elimination Diet minus legumes as well) - she gained even better than she had on the Neocate. She was still allergic to dairy/soy/egg/wheat/legumes (outgrew those allergies gradually over the course of the following two years, except the egg which persists) --- but as long as I avoided them, she was fine.

I only share this in case it's something you want to try. And having exclusively pumped while formula-feeding and rebuilding my supply for over a month and then mostly-pumped for quite a bit longer than that --- and recognizing the dietary issues you're already juggling -- it's entirely understandable if you don't want to attempt what I did.

again - I'm so sorry - this is such a difficult road and until someone has walked it, there's no way to understand how awful it is. I wish I could help somehow.
Oh boy, you are so amazingly committed!

I've thought about this often, and would probably continue pumping as much as possible just in case she eventually shakes whatever ails her.

I also wonder if I commit to keep the Big 8 out for a few months, then nurse her at night when she is peaceful, and formula feed during the day, if that would strike a balance w/ her gut.

Then again, I'm still not at all convinced she is allergic. Once we rule out ENT issues this morning (heading there soon) then I'll take a long hard look at diet/lifestyle/sanity etc and go from there.

I'd love to do something like you did, and amazing job on sticking with your little one.
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Old 08-31-2010, 03:27 PM
 
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Sending good vibes for an informative ENT visit!

Jen, former sys admin and current geek , wife to DH , SAHM and Montessori homeschool teacher to DD "Nugget" (05/07) and new arrival DS "Sprout" (03/31/10)
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Old 08-31-2010, 07:29 PM - Thread Starter
 
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ENT says normal normal normal. After 36 hrs on pumped brstmilk from bottle she is violently puking up everything she eats, screaming in a horrible way, throwing up phlem, and just miserable. My 2 yo is on total meltdown.

I'm deciding right now that I won't go back to the state things are right now. Had to call DH home from work. Cancelled a 2nd Dr appt I couldn't go to, etc.

I'm going back to formula. I'm going to pump a few times a day. Probably going to stay off of dairy/soy. After awhile I may slip in a night nursing if she wants, and if it causes no harm once a day, down the road. My biggest thing holding me back is thinking....what if she outgrows this at 6 mnths? But I can't do this for 3 more months.

I get right to this "so done" point and feel total relief, then the thought of not nursing her into toddler years, after ouchies happen, during the night, etc...just breaks my heart and I can't help but think there HAS to be another answer.
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Old 08-31-2010, 07:58 PM
 
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just a suggestion if you are in 'look for an answer mode' again, you could contact Jack Newman's breastfeeding clinic: http://www.nbci.ca/index.php?option=...d=62&Itemid=33
and get them on your case. You start by sending a short email describing the problem. Might be worth a shot.

I'm not sure I could do what you've done. So dedicated!

New Mom to little G May 16, 2010.
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Old 08-31-2010, 09:51 PM - Thread Starter
 
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I have decided a few things definately:
1) Baby E's gut needs peace
2) Family needs peace
3) I need to eat
4) We all need to regroup
5) I'm not 100% ready to throw in the towel

So I think the answer is to take a few days, let Baby E recover on HA formula and be happy, I'm going to expand my diet, still limiting the top allergens, but not living on turkey and millet. I'm going to pump as much as I can to still allow me to sleep and take care of my kids. In a week or so, I may see if I can squeeze in a single nighttime breastfeeding. Maybe I'll have regrouped enough then to feel like I can reassess, and still have some supply to work with. Maybe I re-eliminate. Maybe her gut will be happier then. Maybe I'll know that the HA is the right choice.

But right now we all need a time out & I'm going to pump as much as I can to have to option to try again at some point, even if its a ways down the road. If I can get a good freezer stash for when she is several mnths older (and maybe can tolerate) or can even maintain a once/night BF-ing with a long term borderline limited diet or something.

So for now, time out. Then reassess when I no longer want to run screaming for the hills (and DQ).
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Old 08-31-2010, 09:58 PM
 
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That sounds like a great plan.

Co-sleeping is really wonderful when your child actually SLEEPS!! familybed1.gif
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Old 08-31-2010, 10:39 PM
 
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I have decided a few things definately:
1) Baby E's gut needs peace
2) Family needs peace
3) I need to eat
4) We all need to regroup
5) I'm not 100% ready to throw in the towel

So I think the answer is to take a few days, let Baby E recover on HA formula and be happy, I'm going to expand my diet, still limiting the top allergens, but not living on turkey and millet. I'm going to pump as much as I can to still allow me to sleep and take care of my kids. In a week or so, I may see if I can squeeze in a single nighttime breastfeeding. Maybe I'll have regrouped enough then to feel like I can reassess, and still have some supply to work with. Maybe I re-eliminate. Maybe her gut will be happier then. Maybe I'll know that the HA is the right choice.

But right now we all need a time out & I'm going to pump as much as I can to have to option to try again at some point, even if its a ways down the road. If I can get a good freezer stash for when she is several mnths older (and maybe can tolerate) or can even maintain a once/night BF-ing with a long term borderline limited diet or something.

So for now, time out. Then reassess when I no longer want to run screaming for the hills (and DQ).
Sounds like a plan to me.


If you don't mind me asking - what HAVE you been eating while on the diet? Perhaps your child is allergic to something you're still eating? People can be allergic to anything, even so-called hypoallergenic foods.

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Old 08-31-2010, 11:47 PM - Thread Starter
 
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Frugalmama- plain turkey, yellow/green squash, brown rice, millet, pears & sweet potatos.
DeChRi is offline  
 
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