Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 6

[jenfl]

How did things go?

[DeChRi]

Started typing the below last night, fell asleep. Will add more this afternoon!-

Home! Oh my is 6 hrs on the road a long time w/ an unhappy baby.

So much to tell...spent an hour and a half w/ Dr who was wonderful. I'll give the short version tonight then will get on tomorrow and talk about how we got to that conclusion.

She thinks there are a few things going on. The key is going to be taking them one at a time and figuring out cause/effect,etc.

I started w/ an over-supply and overactive letdown. Baby got used to gulp gulping tons of instant milk and being done in 3 min. This casue the foremilk/hindmilk imbalance which we knew and solved w/ block feeding. That's when things ended up going downhill. 1) her gut got messed up from processing the excessive foremilk, causing her general gut discomfort, but also causing her to have a harder time breaking somethings in my diet down. Potentially. She thinks that once I block fed and my supply because "normal", baby didn't like it because she had to wait for letdown and it was pokey. But she still kept w/ her 3 min nursing spells. So she was hungry. Enter the hungry, try to latch, no immediate milk, cry, cycle. She was crying but finally latched on w/ an SNS to get her milks fast. I"d tried that same tactic w/ a syringe, but she was cool w/ the tube. My milk let's down about 15 sucks in, so not too long, but she is impatient. I was pretty amazed that after 7 weeks of trying to get her to nurse, she didn't just adapt to the non-over-active let down. Enter other things. Also has a slight reflux she thinks, so back on Prevacid for now. And a food sensitivity, but she doesn't think it's dairy.

So step 1) is for the next 48hrs feed her as much as she wants of whatever she wants how she wants. If she shuns the breast during the day, give her a bottle. Is she will nurse all night, Great. Just keep her stuffed, will help heal her gut. Working the SNS too, if it helps her latch. During this time I'm actually supposed to pump pump and such to try and reestablish an over-supply and super letdown, to test if her irritation w/ my breast is the flow. So I'm attacking that now too.

So Dr is calling me Monday, after 48hr of full tummy baby, prevacid, SNS, supply increasing, etc, to see if she is happier. THEN we start attcking the food sensitivity. So I am to stay on the diet until then. She does think that whatever is bothering her in my diet is due to an irritated gut and not a true allergy, if that makes sense. So her hope is to identify it, eliminate it, heal babe's gut, then probably reintroduce.

That place was amazing. She sent me home w/ the SNS which was $40 and said try it, if I hate it send it back and they'll sterilize it. If I was to keep it, just send them $40.

She was able to watch her drink breast milk then go right into scream fit. So she does think step 2 is food allergies. But she thinks we need to establish cause and effect so we are starting w/ one thing and going from there.

[eclipse]

That sounds like an awesome, one of a kind doctor. I hope you guys figure out the whole puzzle soon

[frugalmama]

We went through this too with my DD- turned out to be several food allergies to things not in the top 8 allergens.

[PatioGardener]

wow! what a clinic! sounds like a super plan - and you sound so positive actually having a plan. you're awesome, Mama, and it sounds like your DH is too. I hope Monday brings a happy (stuffed) baby ready to nurse

[DeChRi]

I do feel better having a plan. She nursed all night but not today. Flat refusal via screaming. But bottles of breast milk help. Not as happy as the formula did since there is something that bugs her, but much better. Just gotta get her convinced to nurse during the day.

Frugalmama-what ended up bothering your little one?

[frugalmama]

Originally Posted by DeChRi

I do feel better having a plan. She nursed all night but not today. Flat refusal via screaming. But bottles of breast milk help. Not as happy as the formula did since there is something that bugs her, but much better. Just gotta get her convinced to nurse during the day.

Frugalmama-what ended up bothering your little one?

Hers turned out to be Oats mostly, with coconut and tree nuts also causing it. She is now 4 and normal as can be except for a whole bunch of food allergies and tummy issues.

What you said about her sleeping all night too - DD did that when hers was at it's worst - she was so exhausted she could sleep through the tummy issues mostly.

[myk]

it sounds like you're on a good plan now. i had to combo feed breast milk/hypoallergenic formula when my first was born, and it was really emotionally draining. ours resolved faster than yours, thank goodness.. i just wanted to say hang in there. it's NOT easy. you're a great mom - stay strong!

[2boyzmama]

You HAVE to share the name of this dr!!! Will she do consults via phone or records review I wonder?

[Casha'sMommy]

DeChRi-Just wanted to say how wonderful it is to "hear" the calm in your posts.
So happy for you that you found such a wonderful doctor and have such a great plan in place.

[DeChRi]

Man, set back after set back. We came home from Nebraska, the next few days went well. She nursed well, my milk must have been well detoxed after 2+ weeks of nothing but turkey/chkn/millet/rice/squash. Last Monday in the middle of the nice I woke up starving, feeling totally depressed an deprived, had no turkey cooked up and ate two big bite of my favorite protein bar (which included whey, casien, soy, egg product, nuts, you name it) in my half asleep-ness. Within hours she was congested and screaming. I felt horrible. It went on all week. I went back to 2100 cal a day of the plain turkey, millet, rice, squash. She was so miserable. I was miserable. Even at 2100 calories of gutting that down, I am 12lb lighter than I was 2.5 wks ago (and I was 5'8" 145lb, muscular then, so not padded enough for a large weight loss). Finally, after talking to the Dr, she said that it takes time for the gut inflammation to subside. At wits end again we are 36 hrs into a 48 hr streak of hyperallergenic formula to calm her gut, me pumping every 2 hrs around the clock to keep up supply. I am exhausted, feel like I am wasting away, feel horrible guilt for giving my baby toxic milk from two bites of a stupid bar, and daunted at the thought of not being able to eat those things long term, when they made up 90% of my diet. After 36 hrs on formula she is SO happy, content, smiling and comfortable. I am doing formula 1 monre day, then will try nursing again and hope my milk is "clean" enough to not hurt her, then over the course of weeks will slowly add back in foods and pray for the strength not to have even the tiniest slip up, because it causes her such misery.

Burnt out. My 2yr old is totally despondent from the screaming this week and effort all of this is taking. I am growing resentful of every meal I make when I am eating unflavored turkey and rice every 2 hours all day.

I never thought that after 6.5yr of nursing two others, that #3 would end up like this.

[jenfl]

You're doing an AMAZING job. It's a big victory, at least, that you seem to have narrowed down that it's a food issue.

You're strong, and you CAN do this for your LO.

On the flip side, you've already given her a fabulous start. If dealing with these issues is really making life miserable for you and your family, it's a viable option to move to the formula.

(And I know what you mean about not thinking that things would end up like this. My son has a posterior tongue tie that took months to get diagnosed and can't be fixed. We fight through the pain and frustration every day.)

[crunchy_mommy]

Originally Posted by jenfl

On the flip side, you've already given her a fabulous start. If dealing with these issues is really making life miserable for you and your family, it's a viable option to move to the formula.

This. I'm not one to advocate formula in the face of nursing troubles but this seems to go beyond 'normal' challenges, it's on a whole 'nother level. Though I have no doubt you can get past this with a lot of hard work, strict adherence to the diet, etc. you need to make sure to weigh whether it's still worth it to you too... (I'm not trying to encourage you to give up or keep going, just to weigh the benefits vs. the toll is taking on you & your family & even your LO.) it sounds like a nightmare. Hang in there & keep us posted...

[Youngfrankenstein]

You have tons of great advice. I am wondering though if you're pumping too much. Maybe cutting back to every 3 hours during the day and letting yourself have a midnight to 6 a.m. break from pumping. Maybe lo will nurse at that time or not. It sounds like your supply is well established at this point and I think it may help your stress level.

[eclipse]

Originally Posted by Youngfrankenstein

You have tons of great advice. I am wondering though if you're pumping too much. Maybe cutting back to every 3 hours during the day and letting yourself have a midnight to 6 a.m. break from pumping. Maybe lo will nurse at that time or not. It sounds like your supply is well established at this point and I think it may help your stress level.

I agree with this. I found when I was pumping that a good night's sleep (or a decent night's sleep) had major impact on output - If I got a good block od sleep, I actually pumped more milk total than if I had pumped during those times.

Like a PP said - now you know it's food. It's crappy that your dd has to be in pain, but now you know, and that's not a bad thing. I'm wondering if, once you give yourselves a few weeks on the diet and allow her gut to heal, you should start eating small portions of some of the foods believed to be problematic - start with the protein bar ingredients, one at a time, one bite a day to start with. If it seems like she does okay with one, go back to back to the TED for a couple of days, and then go to another ingredient. I say go back to the TED, even with a food that seems to work, just so that you're trying things in complete isolation. Once you get through the major allergens, you might know exactly what's affecting her - and even if you don't, being able to eat eggs or gluten or nuts would probably make you feel loads better.

[Casha'sMommy]

Sorry to hear things aren't going so well. You're doing really great and I know there is a light at the end of the tunnel.

I was thinking can you have avocado? I was thinking you might add that to include a little extra fat in your diet. That is how I managed through our ed. The best part was that it took away every craving for cheese and chocolate.

[kriket]

Originally Posted by crunchy_mommy

This. I'm not one to advocate formula in the face of nursing troubles but this seems to go beyond 'normal' challenges, it's on a whole 'nother level.

You are leaping though some serious hoops! I don't think I could do it. You are a very very strong mom!

[2boyzmama]

Boy mama do I understand the depressive state that comes from a sick baby, a stressed mama, and not even being able to have some comfort food. Ice cream was what I wanted, so desperately. I remember many a night sitting awake, holding my screaming sick baby, and just crying and crying, wanting some ice cream.

We made it, but we did not have to restrict like you are. What you are doing goes above and beyond ANYTHING I've ever heard of. My son's food issues were much more minor, it was his physical defects that were harder to overcome. But even those we made it through.

Please remember your mental, physical, and emotional health in all of this. MDC is probably the most "crunchy" place on the internet, yet none of us would judge you if you decided at some point to stick to the formula. God knows you have done 100000% more than most women would ever do.

Sometimes, in the face of medical issues, it is okay to have to rely on medical food. That's why it exists. It does not make you a failure. Something is going on in her little gut, and if the only solution that allows her to stay on your breastmilk is also causes you to seriously suffer, then you need to weigh your choices.

I'm glad you have a plan (another day of formula, then back on the breast, then slowly carefully adding foods in) but please know that if you end up relying on the formula, it is not the end of the world. Also, remember your milk can still be useful to others if you wanted to donate it.

[DeChRi]

Thank you all so much for the support...it really means so much. We just finished 48 hrs of formula and Baby E is soooo happy. It's amazing, the turnaround. I'm now 3 wks into the elimination diet and almost a week since my one lapse of a couple bite of protein bar. Now that her gut is on the mend again and my milk is "cleaner", I'm going to go half and half for a few days...nurse during night and formula during day, to give her a little time to heal while I finish clearing the system. Then this coming Thurs-Sun I'm going to nurse 100%. If she is still happy I am going to start to very slow add in of foods. If she falls apart after the nursing streak, I think I may be done. Pump and freeze for awhile and hope to give to her when she is one-ish for awhile of something, if her gut is better.

[DeChRi]

I meant to comment on adding things back in. The Dr I'm working with feels pretty strongly about keeping it to just those foods (turkey/lamb/yellow and green squash/millet/rice/potatos/pears) for at least the next week. Now that we have done this 2nd 48hr formula test that seems to work miracles on her, she doesn't want to upset her healing gut. She wants to get a solid, several day guage on how she doesn't just nursing w/ purely clean milk. From there I have a very specific, day by day list to add in a set order, introducing a new one every 3-4 days over 50-60 days total, with the dairy, soy, nuts, etc being at the end. I could really hang in there as long as I can get another solid protein source that isn't meat. While we do eat meat here (are blessed w/ great access to affordable free range varieties), I can only eat so much. It's hard on me from a hobby standpoint, as my biggest hobby/interest/sanity keeper is a decade long bodybuilding/weightlifting regimine. So I work really hard to maximize that w/ high levels of protein. My guess is that may be why it was so hard to clear my system...for yrs I've eaten 7 meals/day and they each have large protein servings, 5 of which are scoops of whey protein, yogurt mixed w/ extra whey, cottage cheese, 6-8 egg whites, cheeses, etc, etc. Plus 3-4 natural peanut butter servings daily to get high enough calories in.

I am totally not an allergenic person, but my diet was one that would TORTURE an allergenic breastfeeder.

And selfishly, it is making it that much harded to alter my diet, since I've now had to elminate about 95% of what I'm used to eating.

Just whining now...but am pretty determined to see this through a bit further, assuming I can keep the calories up. I've upped my millet intake and did get to okay to swing some plain rice milk for calories.