wanna cry

Kara, I understand your pain very deeply. I wasn’t able to nurse any of my babies despite my desperate desire to do so. (I had to pump and feed all three). I cried, and cried, and cried over it and everyone thought I was nuts. I wasn’t nuts. It’s a sad thing to not be able to do the most natural thing in the world and nurse your baby.

I hope you will be able to keep your supply up and that you will be able to go back to nursing later on, but if you can’t, please try to find comfort in the fact that you did all you can do.

Your little guy will light up when he catches your eye whether he’s nursing or bottle feeding. I know it’s not the same….but it’s still bonding and it’s still wonderful!

ndrose2006-3-31 14:16:33

My son couldn’t even eat until he was 9 days old because he had a birth defect (his esophagus wasn’t connected to his stomach – repaired surgically at 3 days old). They told me I could pump and save it, and even once he started feeding, I’d have to measure how many ML he’d take at a time, so I had to bottle feed (he was a 8 lb baby by the way, drinking milliliters at a time not ounces – yikes!). My son was in the NICU for 2 weeks and I always took great comfort in giving him formula and knowing for sure he was getting all the nutrients he needed and the ounces.

He’s never had an ear infection and only had a fever once – his immune system is great! You can be a great mom in many other ways besides BF…by being a great advocate for your baby and making sure he has the right meds, etc

lansima2006-3-31 16:29:57

Hi Kara,

I started tearing up reading your post. I also contemplated giving up nursing to try Neocate and in the end, I forged ahead with nursing. You are a CHAMP for doing all of this already to prolong bfeeding.

PPI drugs limit the amount of acid in teh stomach, they turn off the acid pumps, and this, in effect, promotes or allows healing because the stomach environment is much less acidic. A correct dose of ppi could do wonders for you. Not sure about the blood nad mucous in stools, are those the only symptoms right now? A natural healer is aloe vera, which I would recommend trying in your situation (100% organic, refrigerated, we use Lily of the Desert brand from health food store). Have you heard of probiotics, they are also very helpful to promote a healthy “gut” environment. Also,I would do what laura suggested, maybe it’s the rice. I thought maybe my son reacted to rice and took that out in addition to a million other things. I have been on a strict elimination diet since June 2004. At this point, we’re not having wheat or any gluten products, dairy, soy, beef, fish, and I had cut all classic reflux foods and am slowly reintroducing them. Everyone says rice is fine for all babies, but you know, all babies are different. Did you try things like avacado (good source of fat for you), chicken, pork, hummus (w/o garlic, very plain), or other grains that you could cook? Have you been very strict with the diet?

I’ve heard that with Neocate you must do a two week trial. If you think of it that way, pumping for two weeks isn’t so bad. I also had such a hard time thinking about refusing the one and ONLY thing that had ever helped us with all the reflux, etc. going on. Dh was completely on board for me to quit and start Neocate… but my gut feeling was that Neocate would not solve our problems. We ended up having an endo soon after I was going through these horrible decisions and they did not find the eos cells, which are a sign that the baby should be on Neocate. If they had found them, I would have quit and begun Neocate. Testing (endoscopy and ph probe) can answer a lot of these questions, but sometimes waiting to get scheduled takes too long and you need results now.

I think that if you really want to continue on nursing, there might be some avenues for you to try regarding meds and dosing. My son is also on Zegerid and we LOVE LOVE LOVE it. If you are worried to push the docs with dosing, etc., think about how badly you want to keep nursing and channel that energy into convincing them to let you try a high dose of zegerid. Dr. Phillips will answer your emails regarding weight and age and give a dosing recommendation that you can print out (print that along with his info and MArci-kids info) and take it into the docs office as ammunition. That’s what I did and it really helped. Dr. Phillips even gave me his CELL phone number if they had questions!!! http://www.marci-kids.com,

If you really feel like Neocate is the right thing to try for now, then try it, it really could be a saving grace. In the end, we all just want our babies to feel better and whether controlled diets and bfeeding can make that possible, or whether Neocate does that, it’ll be the baby getting better that will make it all worth while. Hang in there, I really know how it feels…

Kara,

I really sympathize with the waiting periods for trialing new foods, etc. I understand worrying about your health, too. When Lucas was 9 mos old, he had two decent nights in a row and I decided that I would only eat the things I had eaten on those two days for the next three weeks. I think my family members thought I had gone over the edge. Are you taking a multivitamin or at least some calcium supplements?

With Neocate, Lucas was nearly 9 mos old, he was newly on Zegerid, we had switched to a ped gi we liked better than our first, I had discovered he was MSPI, so those things were helping the situation. BUT, he was still waking up an average of six times a night. Many nights more than six–waking screaming and crying and arching. At least every two hours, often more. Most nights he woke 45 mins after going down and this was only the beginning…. He was still spitting up a lot, but less than before I removed the dairy, beef and soy. His days were starting to get better, but nights were such a horrible time. Dh started really questioning if it was something with my breastmilk. We had only had an upper gi at the time. Dh was really encouraging me to try Neocate, and I posted on these forums about it nad got some amazing responses from folks who had experienced the entire spectrum from formula fed all the way, to bfed on elim diets, and everything in between. I had experienced severe breast issues myself prior to this time and these things had left me VERY unwilling to pump for two weeks. To this day, I avoid pumping at all costs. So, the previous breast problems that I had experienced played their part in me wanting to continue bfeeding and not do the trial as maybe another mom would have jumped at a 2-week Neocate trial. I mean, it’s only pumping, it’s really not that bad. Anyways, like I said, the endo confirmed that there were not enough eos cells to indicate a problem with my milk, so we went forward with nursing.

Looking back, I am very positive that Neocate would have helped us. I mean, just because it’s obvious to me now that Lucas has real sensitivities, if not allergies with a lot of foods. So, I am sure he would have done much better, much quicker with Neocate. And we probably would have chalked it up to being my milk as the problem. I can’t say that it would have been better….although I could have been eating for all these months (!!) nad he might have been sleeping better for all these months! Hind sight is always 20-20. Before the endo we also thought he would outgrow this when he started walking. But I wanted to keep nursing and I was willing to do the elim diet and keep strictly to the foods that seemed okay. I never dreamed he would be 18 mos old and we’d still have four or more night wakings every night, and that I would be cutting even more food out.

When you say spitting up a lot, what do you mean? Have you ever counted? Looking back, an average day was at LEAST 100 spit ups, many days much more (I once counted on what I considered one of our best days and it was 27 times by 6 pm). But I never thought to count and just didn’t know what was normal. It’s just something else to think about and to report to your docs. I wonder if the blood in teh stools would stop after the ppi really kicks in? Is that supposed to happen? Do the docs have a reading on that? How old is your son? Would you consider having a ph probe and endo done on him? Testing is an obvious next step if the Neocate doesn’t work, or if you want to determine more before starting the Neocate trial.

Hang in there, you are obviously doing the absolute best job you can. Definitely let us know what happens.

Kara,

wow, yeah, sounds like your family history definitely lends itself to david having multiple protein sensitivities at the very least. with the prolific spitting up, it makes me wonder about hiatal hernias as well. I normally don’t suggest this to folks until their babies are much older and other things have not panned out, as hiatal hernias are to quote our doctors “very rare” in babies. I was shushed a bit when I first suggested it to my ped, getting hte “very rare” arguement. He said the same thing about MSPI and other protein intolerances. It turns out our child is very rare and it would have helped us if we had considered some of these issues earlier vs. later. That’s one reason i was asking about testing. Hiatal hernias DO NOT always show up on endoscopies, but then can show up on endos. Also, from the little I know, the protein in your milk being a problem can be linked to eosiniphilic cells showing up in their endoscopy tests. I don’t know a lot about this, but there are lots of posts on this forum about them from the past. It’s another reason to have an endoscopy if you want concrete facts BEFORE you make yourself and child miserable by refusing him to nurse. Just something to think about. I’m emailing Laura (our resource specialist) about these links right now.