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#541 of 625 Old 10-20-2010, 09:54 PM
 
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I totally understand being done. Go, make your daughter comfortable. This is what formula is for.

You have done AMAZINGLY.

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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#542 of 625 Old 10-20-2010, 09:55 PM
 
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My second baby nursed like that (pulling back), too. He's the one with some food sensitivities and also sensory issues. He also had a lot of gas as a baby (and toddler)... I thought I read somewhere that it's not uncommon with kids w/food sensitivities, though...

Jenna ~ mommy to Sophia Elise idea.gif  (1/06), Oliver Matthew  blahblah.gif (7/07) and Avery Michael fly-by-nursing1.gif(3/10)

 

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#543 of 625 Old 10-20-2010, 10:05 PM - Thread Starter
 
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I dont think she has an overactive gag reflex...only because she slurps her fingers wayyyy far back and her favorite binky is a massive long one.

I know there is still the OT..and if the one we are on tap for in Jan cant get us in we can drive all over and find another...and I know we can hunt and search in hope of help.

But I know what I get with Neocate. And I can make my family and Ellie comfortable and functional with that. And for whatever reason it seems that simple right now.
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#544 of 625 Old 10-20-2010, 11:18 PM
 
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I had her in the sling a bit ago, cradle style, she was crying/dozing. She has been crying for hours now. She opened her bloodshot eyes and locked eyes with me in the worst pleading baby look i've ever had. I was hit with this overwhelming feeling of "time to let it go". And I dont feel tortured about it.
Somehow I missed this post earlier. This sounds to me like a strong mother's intuition kicking in, and so I say...

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I totally understand being done. Go, make your daughter comfortable. This is what formula is for.

You have done AMAZINGLY.


You have given it your absolute 100% best. You could keep going down this path, but your priorities have changed now. I hope you feel nothing but peace and pride in your willingness to do everything you could to help your baby, and your ability to recognize when that means something different than you originally thought.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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#545 of 625 Old 10-20-2010, 11:32 PM
 
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You know what? If you're done, I get it. I'm a lactivist - I nursed three kids until they weaned, my oldest for over 4 years through 1 pregnancy and part of another, I worked hard to establish breastfeeding with my oldest after a NICU stay, I nursed through ds2's dairy intolerance, etc - meaning, I would work damn hard to make breastfeeding work. But I don't know if I could have worked as hard at it as you have. I have a feeling I would have bailed a long time ago. I know hearing things like, "You've done a great job, you've worked so hard, don't feel guilty" are kind of cold comfort at this point, but it's also true. If you decide you're done, I don't think there's anyone here who will blame you. If you decide by tomorrow morning that you want to give it another try, we'll all rally behind you on that, too.
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#546 of 625 Old 10-20-2010, 11:33 PM - Thread Starter
 
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I totally understand being done. Go, make your daughter comfortable. This is what formula is for.

You have done AMAZINGLY.
My 11 yr old told me this evening (not angrily...little ones were sleeping, DH was working, she and I were cooking)..."when Ellie was on formula we were able to have real conversations about thing instead of you being so burnt out and angry by the time I go thome every day". And she said it very sympathetically, not bitter. But it really hit home too.

I am not sure what flipped this switch. And i'll probably keep pumping for a bit just in case.....but after my 11 yr old nursing until nearly 4 yr, and DD2 nursing until DD3 came along (2.5 yr)..I think I ready to let it go. My oldest also noted that (again, not hostile) she loves babies because they either are warm and snuggly or they get little personalities that you love. But that Ellie is neither and while she loves her, it makes it hard for her to bond and "like" her...but that she say some of that during her Neocate weeks.
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#547 of 625 Old 10-20-2010, 11:35 PM
 
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oh, I totally understand *just wanting to make your daughter comfortable* and bring peace (or a semblance of peace) to your family. to a degree, Neocate did that for us. I don't think my kids were reacting to Neocate at all, but they sure were reacting to my milk and I have *no* idea why. And they both (ever since solids were slooooooowly introduced) have no known or apparent rx to any foods.

I wonder (b/c I've wondered it for myself) if there's anyway she can "nurse" but receive Neocate instead of your bm. I've never used a lact-aid or nipple shield; is there a way your milk can be blocked by a nipple shield and a baby can get formula from a lact-aid simultaneously? Can lact-aid be for sole nutrition rather than supplementation? I wonder this because once my babies were trying solids and had been doing fine with a few of them - around 8 or 9 mos, maybe, I wondered if they'd be able to tolerate my milk *at that point* - like, were their guts in better shape to do well with it? I did give some to my daughter that I'd pumped and frozen and she didn't react but it wasn't really enough to check. But since all solid foods at that point seemed to go fine, I sort of think my milk would have, too. Anyway, is there a way that nursing can be "faked" right now in a way to preserve it for the future when she might actually tolerate your milk just fine?

praying for peace for you.

blessed Catholic mommy to DD 10/07 and DS 2/09, little one due 8/12!

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#548 of 625 Old 10-21-2010, 02:50 AM
 
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Only you (and your family) know what you are capable of maintaining and working through. You have moved mountains to get to this point - more than many other very committed moms would have been able to do. You're an incredibly strong woman. If you aren't yet proud of what you've done, I hope that in a few weeks/months, you're able to recognize it and feel that pride. You have gone far above and beyond in trying to figure this out and make it work. If you feel at peace with this decision then it's the right one for you, at this point.

I think we would all like to know how things continue to go with Ellie. I still think there's a lot more out there for the Ped GI, OT, perhaps speech pathologist to figure out on Ellie's behalf. I hope you get some accurate diagnoses and a way to confidently move forward.

This past weekend, we were on vacation with friends whose middle child had multiple severe childhood allergies (I highly recommend vacations like this, both families totally "get" the whole cross-contamination, "processed in a facility that" etc. sort of lifestyle) .... she was allergic to yeast, wheat, egg, dairy, peanuts, treenuts, soy - I don't know what else. She's outgrown all but the peanuts/treenuts. She wasn't diagnosed 'til she was three. Her mother told me that she and her husband were SO relieved (and sad) to discover that they *liked* her, once all the allergens were figured out and out of her system. She'd been a crabby, clinging baby (as your daughter describes) up 'til then and they had both felt guilty that they didn't feel as loving and bonded towards her as towards her older sister. So I know exactly what your dd1 was describing, and the impact it can have on kiddos and parents too.


Not all who wander are lost.
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#549 of 625 Old 10-21-2010, 09:48 AM - Thread Starter
 
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Thank you all for the kind words, thoughts and ideas.

At the risk of being a little bit like the "I'm breaking up with you...no wait, but I love you!...I'm breaking up...no wait!"..lol...

I gave her Neocate during the night and her night was Much Much better. I think that while I have "clean" milk, I'll pump and give it to her in a bottle for a couple days and see if that helps. That will as least give me some info, moving forward, regarding her suck/swallow/etc. If she improves on BM in a bottle...well, maybe we try and figure out where to find an OT sooner. If there isn't any improvement, I'm going to go back to the Neocate and pump long enough to feel good that she has "significant" improvement to make me feel good that it's the right choice.

I still feel the same as I did last night, but feel like those two things will be "batting clean-up" on my conscience, if that makes since.
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#550 of 625 Old 10-21-2010, 10:21 AM
 
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It seems reasonable to do what you're planning but have a back up plan. Makes sense to me, anyway Glad to hear her night went so much better.

I have to agree with everyone else that you have done *so* much to make this happen, you should not feel bad at all if it doesn't work out. There's only so much anyone can take! It's so important to have a sane mommy, too, you know!

Jenna ~ mommy to Sophia Elise idea.gif  (1/06), Oliver Matthew  blahblah.gif (7/07) and Avery Michael fly-by-nursing1.gif(3/10)

 

dizzy.gif Wading slowly and nervously into this homeschooling thing.

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#551 of 625 Old 10-21-2010, 10:23 AM
 
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Originally Posted by DeChRi View Post
I gave her Neocate during the night and her night was Much Much better. I think that while I have "clean" milk, I'll pump and give it to her in a bottle for a couple days and see if that helps. That will as least give me some info, moving forward, regarding her suck/swallow/etc. If she improves on BM in a bottle...well, maybe we try and figure out where to find an OT sooner. If there isn't any improvement, I'm going to go back to the Neocate and pump long enough to feel good that she has "significant" improvement to make me feel good that it's the right choice.
This sounds like a good path to follow. I'm praying that you will find out what's best for your DD.


Kim mama to DS 12/2005, Pepper kitty , and 10/03, 1/05;
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#552 of 625 Old 10-21-2010, 10:27 AM
 
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I have a strong feeling that it is more the ingestion method than the contents. Her nursing doesn't sound ideal to me.

Leigh, mama to Rostislav homeborn Aug 9 2007, and Oksana homeborn Feb 24 2011.
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#553 of 625 Old 10-21-2010, 10:35 AM - Thread Starter
 
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I did mean to mention that I saw the LC this week who told me that from where she stood it looked fine, but then said my next step is an OT. I said we were on the books for end of Jan. She was disheartened as her 14 mnth old has allergies amongst other feeding issues and they were just referred (ironically by Dr NE, whom they see as well) to the OT. I asked if there were others that may be able to get us in sooner. She is researching that, but like the GI place...CM Hospital is the gold standard here.

I'll keep you all posted
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#554 of 625 Old 10-21-2010, 12:39 PM
 
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You know, I can't offer a single piece of advice to you, but I just wanted to jump in here to let you know that I just finished reading all 28 pages from start to finish. I've experienced such a variety of emotions for you over the last hour and a half (yes, it's taken me that long lol).. I've been afraid, sad, angry, tearful, enraged, ecstatic, and so very hopeful.. but my #1 emotion? Complete astonishment. I can't even put into words how much you have amazed me. You've gone through SO much... you are such a wonderful, amazing, and strong mama. Please know that. I wish so much that I could hop through the computer and give you a giant hug.. and a high five.. and a pat on the back.. and, well.. another giant hug.
Much love and many thoughts and prayers to you.

Wife and mother to 2 kiddos - 17 yr old DS jammin.gifand 13 yr old DD energy.gif.. and a cat that thinks he's a dog dizzy.gif
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#555 of 625 Old 10-21-2010, 01:32 PM
 
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What style of nipple are you using with the bottles? Is it something that Ellie could transfer enough pressure through to use as a nipple shield? If you try BM in the bottle and that works fine, you might consider using the bottle nipples as nipple shields. That should be more effective at keeping your supply up than pumping and she could latch the way she does to a bottle which doesn't seem to bother her as much as directly to the breast.
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#556 of 625 Old 10-21-2010, 03:49 PM - Thread Starter
 
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Thank you all SO much for the touching and encouraging posts, and continued ideas and support.

While i've been trying to pump enough to bottle feed, I have been giving her Neocate....about 18 hours now. I don't know who I am kidding, but she is 80-90% more comfortable. It's incredible. We've spent the day playing, smiling, cooing....my 2 year old is relaxed and happy.

I find my baby to actually be a delightful little person.

rhiandmoi - we've used primarily playtex venaire with standard nipple. Dr. in NE recommended it as it is the slowest flow nipple on the market and they have to use thier mouth on it the same as they would when nursing. She recommends it for going back and forth. However, we have used several different kinds and she doesnt seem to have a positive or negative effect on her. She is a pretty indifferent kiddo when it comes to how she gets her food.
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#557 of 625 Old 10-21-2010, 04:39 PM
 
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Trust yourself.

Pat

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#558 of 625 Old 10-21-2010, 09:20 PM - Thread Starter
 
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Today was the first day, since she was about 3 weeks old, that I don't think she had even 15 mins of discomfort. Pure happiness. We picnicked @ the park and she tried the infant swing. She petted a doggie. She was so relaxed. She was living life. It was awesome. For whatever reason, she would never fall asleep @ the breast and naptimes were always a massive screamfest. She does fall asleep w/ a bottle which is so nice.

Today may have been an exceptionally good fluke. But I suddenly remember why I wanted more kids. :-)

I have a wonderfully sweet baby.
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#559 of 625 Old 10-21-2010, 09:27 PM
 
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Jenna ~ mommy to Sophia Elise idea.gif  (1/06), Oliver Matthew  blahblah.gif (7/07) and Avery Michael fly-by-nursing1.gif(3/10)

 

dizzy.gif Wading slowly and nervously into this homeschooling thing.

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#560 of 625 Old 10-22-2010, 11:18 AM
 
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So happy you guys have found some peace.

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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#561 of 625 Old 10-23-2010, 03:34 PM - Thread Starter
 
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So if there was a thread pool on how many days it would take for me to come back and make this post, less than 2 days wins.

After Blissfull Wonderful Day, we've had horrible night, followed by, bad day, followed by really horrible night, and today is hovering around Please Make It Stop.

I'm so exhausted and irrational so here are my facts:
-i know she has some kind of allergy but I mentally cannot TED at this moment in time. I just can't.
-I can get 3oz @ a time down her, and thanks to my 2 wks of nursing, she has socked on weight. Anything over 2 oz comes up. Anything over 3oz makes her scream.
-night are now horrible
-the meds do jack squat
-I know I need a new GI but my husband is working 80hr weeks and my infant hates the care and the thought of driving 4hr to StLouis is so overwhelming I can't even make sense of it.
-The OT I found in another city close to here punted me back to the one in kansas city that I'm waiting for
-I see GI Jerko on Monday and he will say "looks like she is gaining, wow I did great" and send me out.

I am so incredibly defeated that I have no idea how to articulate the fact that no matter what we have done, my child has not a SINGLE time been comfortable enough to relax and just doze off while being rocked, etc, in 4 months.

I can't even brown a skillet of buffalo w/o crying today. Ellie is inconsolable with anyone but me so while I need a break, my mommy senses won't let me leave her.

I have absolutely no plan, no direction, no next step, and something is wrong w/ my baby that no one has figured out. And I have no fight left.
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#562 of 625 Old 10-23-2010, 03:43 PM
 
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Have you considered homeopathy, for either of you? Helps to treat mama or baby.

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#563 of 625 Old 10-23-2010, 03:46 PM
 
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I wish I had advice, but all I can offer is
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#564 of 625 Old 10-23-2010, 03:47 PM - Thread Starter
 
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Pat - All I've done is the various Hylands stuff for Elle and the same + Rescue Remedy for me, but I nixed it all when I was TED. Open to suggestions of any kind.
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#565 of 625 Old 10-23-2010, 04:10 PM
 
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You need to see a new GI. I know the thought of driving 4 hours is overwhelming, but so is the thought of not having anyone in the medical community investigating or on your side.

Is there ANYONE else near you? Anyone the allergy doc can point you to?

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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#566 of 625 Old 10-23-2010, 04:39 PM
 
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Quote:
Originally Posted by DeChRi View Post
Pat - All I've done is the various Hylands stuff for Elle and the same + Rescue Remedy for me, but I nixed it all when I was TED. Open to suggestions of any kind.
I trust Elisabeth. She is a very knowledable MDC mama and homeopath. She can help. http://taylorhomeopathy.com/


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#567 of 625 Old 10-23-2010, 04:54 PM
 
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Now that she's having difficulty on the Neocate, will the GI doc pay more attention?

I spoke with a nurse friend, and she suggested that you fill out a schedule for a week (or some number of days), hour-by-hour, with how much your LO is screaming. That might get some attention?

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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#568 of 625 Old 10-23-2010, 04:56 PM
 
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I second talking to Elisabeth for homeopathy - lots of experience with allergies, nursing issues, and phenomenal healer.

I was going to suggest trying the alimentum RTF, but it has milk proteins in it, so I'm not sure you'd learn anything from removing corn there but adding milk (since she's still on meds with corn, she wouldn't be truly corn free anyhow).

It sounds like something needs to give on the support front - if your husband can't reduce his work hours, can you maybe hire someone for a couple of months to help with the other kids, cook for you, take some of the pressure off? It's so hard to function or make decisions when you're feeling just DONE.

If she's back to really bad on the neocate, then I'd be trying the TED and adding foods, but I know that's a long, long road. If formula offered you a sustainable option, that would be wonderful - but it doesn't appear like it is. At least on your milk, she was growing.

So sorry, mama

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#569 of 625 Old 10-23-2010, 05:57 PM
 
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Another option is homemade infant formula from the Weston A. Price Foundation. There is a dairy-free version.

Another alternative is you do the formula so baby can get breast milk. Check: Formula for mom not baby! The mama finally got resolution when she was tested for allergies (Comprehensive food panel IgG ELISA blood test) and removed them from her diet and started a 4-Day Rotation Diet.

Breast milk has so many things that protect your babe's gut and help him digest. Here is Dr. Sears formula/breast milk comparison.
http://www.askdrsears.com/html/2/T021600.asp

Have you gone to see a naturopath?


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#570 of 625 Old 10-23-2010, 06:05 PM
 
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Yeah if you're not up for another round of TED I would consider homemade formula... starting with whatever you're going to use as the base and then adding ingredients to it every day or two as long as she's doing well...

I would also step out of your comfort zone as far as "highly recommended doctors" and try to find a GI & OT etc. that are nearby & just see what they have to offer. Sometimes the less renowned doctors aren't only just as good, but also less busy & would have a lot more time to work with you on this & think outside the box.

It's got to be so frustrating thinking you've finally found a solution & then *POOF* she's back to square one & miserable again. She really does remind me so much of my DS. A lot of what you describe is exactly what we experienced for most of his first year or so. It was horrendous for both of us & no one seemed to understand that he wasn't just "a little colicky" or whatever.

Co-sleeping is really wonderful when your child actually SLEEPS!! familybed1.gif
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