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Please help with next steps - breastfeeding at major risk

25K views 624 replies 36 participants last post by  elanorh 
#1 ·
Hi,
Some lovely ladies in the Breastfeeding Forum recommended I roll this direction. The history is here: http://www.mothering.com/discussions....php?t=1251449
It's now 9 pgs, so the short version is:
DD1 and DD2 had no allergies and BF-ed exclusively for years. DD3 was a very calm and docile baby/nurser for 4 weeks, then started rapid decline.

Foremilk/Hindmilk/oversupply/overactiveletdown issue, block fed and took care of it.

Was better for a matter of days, then by 6 weeks we declined into the abyss. The Dr had us tracking cry hours and from 6 weeks forward she cried 10-16hrs/day. Gut pain, stiffness, spitting, congestion. Even when she was not crying, she was miserable. A couple things worth noting: 1) Bowels were always normal and Dr fecal test showed no blood. 2) by night she was burnt out, and while sometimes fidgety at night, never sceamed...just crashed. 3) No rashes of any kind.

It got worse and worse. Finally, around 10-ish weeks, we agreed to do 48 hours on elemental formula. Within 36 hours she was new baby. Not crying, not hurting, smiling....total turnaround. We went back to nursing and I started an emilination diet, under to eye of our ped, the LLL ladies, and the LC's at the hospital. I was eating just turkey, millet, brown rice, sweet ptotatos and squash. They all said she should get progressively better. A week later, zero improvement. None. We went to see a specialist in Nebraska that is a pediatrician and lactation consultant that specializes in allergies. She said just hold the course. We stayed on it....we did one 48hr of spurt of elemental formula during those 3 wks to give her a break. I did that diet, with no seasoning, condiments, nothing....made sure nothing was in my vitamins, covered all our bases. Also had DD3 on probiotics and Prevacid. During those 3 weeks I had one "cave" and ate 2 bites of a protein bar. That is the only "contamination" during that 3 week period. At the end of those 3 weeks I went to back to full on breastmilk, after a 3rd 48 hr on formula to calm her down. Within 36hrs of breastmilk she was screaming, throwing up everything she ate, with phlem, was congested, and back to 10+ horus a day of crying. ZERO improvement, if not a quicker and more severe onset of symptoms.

She is now back on formula. I am continuing to pump and am eating freely to get my weight back up. The Dr recommended staying on the formula for a couple/few weeks to heal her gut, as did several ladies on these boards. I am trying to decide where to go from there.

I have 2 other kids and am struggling to pump so often, as the weeks of sceaming has caused a real decline in my 2yr old. Even at 2100 calories of those foods, I still lost a bunch of weight.

Any ideas, feedback, would be great. I am going to keep DD3 on formula for 3-4 wks and pump as much as I can. My real question is what to do, dietwise, moving forward. It is very hard for me to think of putting DD3 through that pain of trial and error again. As well as the rest of the family.

Open to any and all ideas, as I think I have maybe one more crack at it in me. I just cant let go of bf-ing, as my others nursed for 4 and 2.5 yrs respectively.

Thanks, J
 
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#252 ·
Hugs mama. Wow.


Have you considered any Rescue Remedy or homeopathy or specific flower essences for overwhelmedness for everyone? I don't leave home without RR and "Elm" which is for 'when you are temporarily overwhelmed with responsibilities'.

And I assume you've tried "Gripe Water" which is an herbal remedy of just fennel extract and ginger. Have you tried chiro or acupuncture or TCM or craniosacral therapy consultations, classical homeopathy? All of those could help with digestive disorders.

Pat
 
#254 ·
Quote:

Originally Posted by DeChRi View Post
had to go get groceries, baby screaming in the minivan, had all 3 kids, was all rattled, back out and smashed in the entire side of someone's new silver mustang. i mean really.
OMG! When it couldn't get any tougher, huh...

My heart goes out to you.
 
#255 ·
Quote:

Originally Posted by elanorh View Post


I wish I could come over and hold screaming baby while you take care of things/yourself! I really do.

Do the weight check tomorrow anyway. Just because you're getting it INto her, doesn't mean she's gaining, unfortunately (BTDT).

Have you looked into PAGER to see if there is a chapter near you (Pediatric/Adolescent Gastroesophageal Reflux association)? It is sooo hard to do what needs doing when you're exhausted, stressed, etc. I can absolutely remember the days when I didn't get my teeth brushed (or changed out of PJs).
I have not...but will right now.
 
#256 ·
Quote:

Originally Posted by onetrumpeter View Post
I've been following your thread
SO, so sorry to hear of your situation with your poor daughter. it's heartbreaking to read. sort of btdt but ours looked a little different... definite stool issues (blood, visible and occult - I assume hers had been tested for occult blood?) despite my TED and I just could NOT figure it out. our stool issues and nursing/eating refusal cleared up on Neocate, but the screaming continued (with both my kids thus far).

anyway, just thought of the idea of making a video if you have the presence of mind to think of doing that during one of her episodes. not sure, but that might help the doctors?

SOOOO wish there was something I could do to help. I just know the heartache of thinking "WHAT is wrong with my baby?" and "What can I DO???" We did zantac, prevacid (compounded IIRC) and I don't ever recall seeing a difference. We did chiropractic prenatally and onward (still do - 1x/wk for the whole family but now just for maintenance) with our second. our screaming started to wane around 6 mos. I sort of call it inexplicable "colic" but hate that term. Our GI doc with the second baby emphasized the underdeveloped nervous system and lack of state control ability. I guess. I just never could pinpoint it. it was horror for a good 5 mos and then started to wane. we cut out the prevacid gradually and didn't notice any difference. I just am so sorry and pray you'll find some answers and peace and comfort for both yourself and all the members of your family!
Great idea on the video. I may keep the camera out and see if I can catch one. We did have the stool test and notta.

It's good to see people have lived through this. You are some strong women.
 
#257 ·
Quote:

Originally Posted by WuWei View Post
Hugs mama. Wow.


Have you considered any Rescue Remedy or homeopathy or specific flower essences for overwhelmedness for everyone? I don't leave home without RR and "Elm" which is for 'when you are temporarily overwhelmed with responsibilities'.

And I assume you've tried "Gripe Water" which is an herbal remedy of just fennel extract and ginger. Have you tried chiro or acupuncture or TCM or craniosacral therapy consultations, classical homeopathy? All of those could help with digestive disorders.

Pat
Thanks for the suggestions. I keep RR on hand but have been out for a couple weeks and have not been able to get out to get more. Great suggestion and I will make a point to nab some tomorrow. We have done chiro with no luck, but maybe makes her feel good regardless.
 
#258 ·
After a horrible day, she was calm before bed. She has eaten only 5oz in 12 hours and the less she eats the better she is.

Appt is at 3:40pm cst tomorrw and i'll update.

I've calmed down from the car episode. DH was great...he was like...that was the least stressful thing of the weekend, lol. Perspective.
 
#260 ·


Ouch! I'm glad you and the kids are OK. I hope the conversation with the Mustang owner went as well as possible given the circumstances.


When we were first diagnosed with Ina's reflux, a friend sent the article "Bundle of Misery" to me (the pdf at the top of the following page). I've been thinking of the article, and you, for a few days. If you haven't read the article (and I know you may have done so, having dealt with a reflux babe before), definitely do so!! http://www.reflux.org/reflux/webdoc0...m?OpenDocument - The article is the PDF at the top of the page. We sent the article out to all our friends/family to help them understand a little of what we were going through, too. It was an a-ha moment for us as parents, too. Again, having already had reflux experience, it might be less of an "a-ha" for you guys - but worth reading I think.

One of the biggest concerns when parents are dealing with a sick baby, especially one with reflux, is the level of stress and sleep deprivation and how that affects the rest of life (behind the wheel, marital, work, etc.). If you do have a PAGER chapter near you, they may be able to give you guys a lot of support as you figure out what's going on - I know if I were a PAGER member, one of my missions would be to bring food/calm/assistance while families are struggling so!! Given where I suspect you are located from the geographical info you've dropped, I wouldn't be surprised at all if a large metro area near you has a PAGER group.
 
#262 ·
Thanks so much for the resources. I made it as far as the PAGER website last night before I fel asleep w/ computer on my lap, lol. We are waiting @ dr now. The 4 days since we've been here our ounce count in 24 increments has been 20oz, 24oz, 13oz, and 15oz. But she has not pooped since we were here Thurs and since starting the Neocate she was a daily pooper. Not sure wht that'll do to weigh in.

After 3 days of total hell, she was the happiest she has been in months, this morning. Cried about 10 min total. Totally relaxed. Laughed for the first time ever. Fell asleep peacefully (never does). But then woke up screaming, rigid, wide eyed and was this way for 2 hrs...tried outside, bath tub, feeding, everything. Cried herself to sleep in my arms and is now dozing off and on in sling at Dr.

Seeing her this morning made me realize how far from "normal" she is, and how used to her painful state. Made me very sad for her.
 
#263 ·
Laurie- I've played with the amounts/intervals. Tried 2oz every 2 hour. I just cannot find a freaking pattern. The 24hr after we left Dr last week she was suddenly eating 3oz @ a time but puking it up and screaming all day. The next 24hr she was eating in 2-3oz intervals and was screaming but not spitting. The 48 after she was increasingly happier but not eating. Or spitting.

It is starting to seem really episodic. When she has a down turn she scream, spits, bad silent reflux, those choking ordeals, eats funny, thrashes when eat, won't sleep during the day...the entire list of symptoms. Then this morning it was like an off switch. Not so much as a single verp since last night. No spitting. No gagging. Eating like a normal baby, just not much. Dozes off peacefully.

I can't make sense of it and don't have a long enough test period to establish cause/effect of food quantity/behavior.

I do know she has never been a quantity eater. Not since day one. That has truly been the only single consistant behavior from the beginning.
 
#264 ·
I think you need a GI scan. It really sounds like something is limiting her stomach capacity. And then she gets refluxy, irritated, etc. She could already have some esophageal erosions which could be contributing to her overall unhappiness.

Could you feed 1 oz every hour instead of 2 every 2?
 
#265 ·
She was up 2oz. Dr.C not impressed w/ her eating & is @ end of the road. She is calling the on call Ped GI @ the Children's Hospital and telling them she has a patient losing weight and needs to be seen immediately. She said she will give them the last weight or whatever she needs to in order to make the numbers such that they get her in now. She said that the way she is eating, if we saw her in 2 more days she would be down in her weight again, etc. And that ultimately she is still several oz lighter than 2 weeks ago and that she just has to be seen. So waiting on call this evening or morning about when we go in.
 
#268 ·
It occurs to me that, if you haven't already, you might want to video a screaming episode. In case you get to the doctor and it's a good day for her or the change of scenery is enough to get her to calm down for a while... you want to be able to show the doc just how bad things are.

Just a thought.
 
#272 ·
Waiting on call. Dr talked to GI Dr and they said they'd get w/ me on appt. Andddd nothing yet. If it nears the end of the work day, I'll just call them.

Bright side...today and yesterday were some of her best days ever. Like maybe 2-3 hr crytime total in 36 hrs.So from a mental relief standpoint, I'm far less rattled than a couple days ago. It is so amazing to see her smile and engage.

And I've been video-ing her episodes. Great idea.
 
#274 ·
My friend (who I was pumping to contribute to thier BM stock for) had a baby 3.5 weeks ago (premie w/ intestines on the outside). Their 5 year old DD had same thing but was full term and recovered after some surgeries. Baby boy was doing ok, had several surgeries, and over the last several days had 2 chest tubes removed, was taken off heart/lung support and was close to being upgraded from critical condition. He took a sudden turn and they lost him last night. For anyone here that prays, please keep baby Cade and his family in the line up. This likely was their last chance for another child.
 
#275 ·
Quote:

Originally Posted by DeChRi View Post
My friend (who I was pumping to contribute to thier BM stock for) had a baby 3.5 weeks ago (premie w/ intestines on the outside). Their 5 year old DD had same thing but was full term and recovered after some surgeries. Baby boy was doing ok, had several surgeries, and over the last several days had 2 chest tubes removed, was taken off heart/lung support and was close to being upgraded from critical condition. He took a sudden turn and they lost him last night. For anyone here that prays, please keep baby Cade and his family in the line up. This likely was their last chance for another child.
It is heartbreaking to hear stories like this. I am so sorry for your friend and her family. Prayers heading in their direction from here.
 
#276 ·
Yesterday I called the GI lab and was told that unless her weight dropped 10% of weight or showed signs of dehydration, then we had to wait. Dr must've called em back because I just got a call and we go in Monday at 1:15pm. Not as soon as I'd like, but better than Oct 21 and it's set.
 
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