Trust that you are the right mommy for you new sweet baby, and that he will be fine. Fine can end up looking a lot different than we thought it did. Let yourself feel blessed for having him in your life, and let yourself see how blessed he is to have you.
Peace
Absolutely. I think this a place a lot of us get to in our journey.
First of my, my best of luck to you. No two situations are the same, but you asked for perspective, so I'll give you mine.
I was in your situation when my dd was a baby. I kept going back to the pediatrician seeking help and got a pat on the head and told she would grow out of it.
Very, very long story short, I finally found a good doctor when my dd was 4.5 year old. She was diagnosed with eosinophilic esophagitis. It turned out she had been in chronic pain her entire life. She was an unhappy, violent little child, and received special services under the autism spectrum umbrella. She got a g-tube, and was given neocate. Things got better. We switched to elecare and things got much better. Her autism and violent behavior disappeared, she gained weight, etc. We had our child back.
Here's some perspective that was very hard won for me: I nursed my daughter until she was 4 years old. I tried everything (elimination, various alternative medicines, etc, etc) and in the end what she needed was the formula. She is now 6 years old and does not eat food. She has not eaten food since she was 4.5. Taking the long view, I wish we had gotten the diagnoses as a baby, even if it would have meant giving up breastfeeding. It breaks my heart to watch my child watching all the other children eat while she can't have anything.
My daughter had severe reflux, and after trying Zantac without success, we switched her to Prevacid, which seemed to do the trick.
add me to the eosinophilic esophagitis clan. my kiddo wasn't severe or having anywhere near the pain your poor kiddos have. I share the pain of this with you - it is so tough to end BF when you are not ready to.
My kiddo had belly pain and occasional vomiting. He was dx with eosinophilic esophagitis in June with a really nasty looking endoscope, even though he wasn't having horrible outward symptoms. His doc said he must have an enormously high pain tolerance to have been living with this.
He is now off of 18 foods and supplemented with Neocate Junior.
I'd talk to a GI about this for both of your kiddos. Big hugs mama. It is so sad when you are seeing their little faces in pain.
Don't know if someone suggested this, because I skipped to the end, but I read an article on mothering a while back (sorry, I don't have the link) about a woman whose child had a very upset stomach from her milk and nothing was happening. Finally someone suggested she pump before nursing, and it worked. Turns out her child is lactose intolerant and couldn't take all the sugar in her foremilk. Don't know if that helps. Good luck.
BonnieNova, on the practical end, out youngest had similar problems, and I don't know if you already tried this, but we put him in an upright, outward facing position in the wrap swing for at least a half hour walk following feedings and it seemed to help with the reflux. It also gave me a break out walking. That being said, if it's food allergies or a problem digesting certain proteins, it's a long road. We got through the reflux, but DS (7yrs) is still one very allergic boy, still has stomach problems, and my older children's "perfect" healthy diet is not how he eats because it's painful (sometimes he practically lives off fruit, carrots and yoghurt because that's what he can handle), and he has allergic shiners half the time no matter how diligent I am. So do your best, try the sling if you haven't, maybe see a lactation consultant (especially if you have questions about trying to re-try nursing after formula, but don't beat yourself up about the outcome. Whatever keeps you and your baby happy and sane is the right thing to do. Us mama's lose so much time and peace over guilt over not doing things "perfectly", when it's our love that counts. Find something special you can do for yourself because you deserve it and you are giving your child the best for his needs.
OP - forgive my fumbling here but I'm sure some of the breastfeeding Mamas can correct my language here....
I have a few friends who had issues with breastfeeding. They used this device that one end would go to a bottle or bag of breast milk (though you could put formula in it I'm sure) and the tube would go through a special thingie that would attach to their breast so the child would nurse at the breast but instead of getting breast milk from the breast, they would get nurishment through the tube. (Gd I hope that makes sense and someone can say what it is I'm talking about). I wonder if this would be an option to avoid nipple confusion?
I never had an opportunity to breastfeed my son as he was 5 months old when he came home to me and while I researched adoptive breastfeeding, it was not something I was able to do. My son is very attached and very loved even though I gave him that evil formula 
OP - forgive my fumbling here but I'm sure some of the breastfeeding Mamas can correct my language here....
I have a few friends who had issues with breastfeeding. They used this device that one end would go to a bottle or bag of breast milk (though you could put formula in it I'm sure) and the tube would go through a special thingie that would attach to their breast so the child would nurse at the breast but instead of getting breast milk from the breast, they would get nurishment through the tube.
An SNS.....but then baby will be getting breast milk as well which sounds like it may be the problem.
An SNS.....but then baby will be getting breast milk as well which sounds like it may be the problem.
Would there be a way to pump first and then nurse? Again, please forgive my ignorance.
Would there be a way to pump first and then nurse? Again, please forgive my ignorance.
Maybe OP would like to try. I know no matter how much I pumped, I'd always continue to trickle some breast milk. At least with my son, there are certain foods where a tiny trickle will bother him, and other foods where it takes quite a bit more.
I'm chiming in a bit late, but I don't think it's a guarantee that he'll forget how to nurse. Keep your supply up, and get in touch with LLL or an LC now to help with latch after this formula challenge. When DD was a baby, she was flagged for galactosemia and at 8 days we switched her to soy formula. It took 2 weeks for the genetic results to come, and after we got the all clear (she is just a carrier) I put her back to the breast and she took right to it. So, don't lose hope. If this is what is meant to be, it's what is meant to be. You are doing the absolute BEST for your sweet baby by trying something different.
OP - forgive my fumbling here but I'm sure some of the breastfeeding Mamas can correct my language here....
I have a few friends who had issues with breastfeeding. They used this device that one end would go to a bottle or bag of breast milk (though you could put formula in it I'm sure) and the tube would go through a special thingie that would attach to their breast so the child would nurse at the breast but instead of getting breast milk from the breast, they would get nurishment through the tube. (Gd I hope that makes sense and someone can say what it is I'm talking about). I wonder if this would be an option to avoid nipple confusion?
I never had an opportunity to breastfeed my son as he was 5 months old when he came home to me and while I researched adoptive breastfeeding, it was not something I was able to do. My son is very attached and very loved even though I gave him that evil formula
SpottedFox, just so you know, the device you are describing is a called a Lactation Aid. It's mostly used as you described. APToddlerMama is right that baby would still get breast milk, but there may be a way to rig one. If nipple confusion is the issue, consider whether baby may be old enough to handle drinking out of a small cup lovingly held by mama. Many babies can handle this at a much younger age than you would think. My own drank breastmilk from a cup at 6 weeks as he wouldn't accept an artificial nipple and I had to be away. Dr Jack Newman's book gets into this and has great advice. If a retry at the breast is an option (say if it turns out that you find the culprit food in your breast milk that the baby is allergic to), there would be less nipple confusion. Another option is to simply use a nipple that works very similarly to the breast. (This would have the advantage of being more comforting). Baby Cakes is right that if it turns out you can breast feed, your baby may be fine either way.
Wow, great idea spottedfox, but I am the kind that would trickle milk. I have an overabundant supply. I have thought of possibly letting just one boob go dry and letting him comfort suck, but now I might not have to do that!
We are now at day 6 (i think) of our 2 week trial. He was doing well on the formula until a few days ago. He started slowly getting worse spitting up again, crying, fighting during the feed. I'm so upset, but in a way relieved that it's not only my breastmilk. Still, he was *much* worse on the breastmilk.
Yesterday I spoke to the LLL lactation consultant. She agreed with going for the 2 week trial after she heard my history. And she did say that most likely he will not forget how to latch since he's been nurrsing for 6 weeks and only bottle feeding for 2. She also said that if it is a lactose intolerance problem, I could "blanch" or heat up my milk in order to boil out the lactose. I have a whole freezer full of breastmilk so that won't be a problem. After the trial I'm going to try that. I'm also going to get him checked out for eosinophilic esophagitis.
But on to other news, we had our cranio sacral appointment today and I think it went well. I'm not really sure what it is all about, but she laid him on a table and felt around his head and neck. I didn't get to see much because my 3 year old was jumping around and getting ancy. DS had just eaten and was crying and refluxing before the treatment, but he stopped and was calmer during and after.
She gave me some DGL to put in his bottle to help soothe his throat. I also noticed it thickens the milk a little so maybe it will help it stay down. She also gave me some pretty good (and expensive) probiotics to put in each of his bottles. After the formula trial, if he is doing better from the craniosacral, I will be putting this in the bottles of my breastmilk. I wish I had known about the DGL before starting the formula trial.
So, I'm trying not to get too excited, because him not doing as well on the formula might mean we need to switch to a more hypoallergenic formula. But it also might mean that my breastmilk is ok. I'm kind of in limbo here, hoping the cranio sacral therapy and herbs work so I can reintroduce the breastmilk.
Thanks everyone!
(edited because my computer froze midpost)
UPDATE: DS is doing well so far. We can still hear the reflux coming up, but he is not crying about it. He is sleeping alot, most of the day actually. The craniosacral doctor told us that he is catching up on lost sleep.
He was awake today for a little while and was not fussing and squirming. He was calm and alert and it was very nice.
I hope this continues. I want my happy baby back.
Thanks for the encouragement. I've been looking for info on how long it takes baby to forget how to latch. I can't find much, except that one can use a nipple shield. ... I'm willing to do whatever it takes to teach him how to latch again.
I can't offer you advice about the reflux, but I can offer suggestions regarding this.
1. If you are careful, I think your child will not forget how to nurse. Your baby is six weeks old, so nursing is already well established. My baby, in spite of constant attempts to teach her from birth, did not even figure out how to latch on until 3 months old. So I think you have a good shot at keeping the memory up.
2. I suggest Medela's Special Needs Feeder (also called the Haberman Feeder), instead of using a regular bottle. You can put the formula in it, instead of using breast milk. The sucking required for this kind of bottle is more like the sucking required for breastfeeding. This is, in fact, how I taught my dd how to latch on in the first place, so I would think that this will help your baby remember. I would think that if you feed the baby with this type of bottle instead of with regular bottles, it will keep the memory alive. I also used this type of bottle to put the baby in a holding pattern, to keep the sucking correct when I was too tired to work on getting my dd latched on, so that's why I think that this type of bottle will help you a lot to keep your dd from forgetting how to latch on.
3. I suggest suck training. You know, where you stick your pinky inside the baby's mouth, and the baby sucks on it instead of a pacifier. This will help the baby remember. I think that if you do this while doing the bottles, this will help keep the memory alive.
4. I think that you could could also use the SNS to do finger feeding of formula, instead of putting the SNS on your breast.
5. And, of course, I suggest pumping to keep your supply up.
Thank you, emilysmama, for the tips. I actually latched him on and empty breast last night and he did well. It was right after I pumped so I'm sure he only got a small amount. The doctor said not to, but he was rooting and I couldn't turn him down at that moment. He needed it and I needed it.
As for an update, he has been refluxing and screaming for the past 2 days. And this was before I latched him on. It's so tough to watch your child in pain and there's nothing you can do about it. I feel like maybe I'm doing something wrong. Maybe it's my fault in some way. I'm wondering if there's something I'm missing in baby care. It's hard to see other moms whose babies feed on the breast without choking, screaming and gasping for air. It seems like it comes so easy to them. I cried all night last night because I'm a mess, the house is a mess and I'm sleep deprived. I want my baby to be happy. I feel bad for him that he had to be born to me. I wish I knew what to do for him. I would do anything to see him happy.
I am taking him back to the craniosacral therapist on Monday. She is going to do another session. I think the first session might have worked, but it didn't last long.
Tuesday is his pediatricians appointment to check out e.e. and see if we can get him on Neocate for another 2 week trial. If the c.s therapy takes this time, I will be breastfeeding again in no time!
And all this with a 3 year old who has special needs without a diagnosis so I don't know how to help him either. Anytime I pay any sort of attention to the baby, DS1 is jumping, screaming, throwing things, totally out of control. He does not listen when I ask him politely. I ask him not to do such and such and he will play games, trying to get as close as he possibly can to doing what I asked him not to do. I can't even redirect him. I feel terrible, but I've had to lock him out of the room at times because he threatens the baby. Then he's crying outside the door, the baby is crying in my arms and I have no idea how to handle either of them.
Sorry about the rant. I don't really have AP friends. If they knew my baby was eating formula (which they don't), they wouldn't understand my feelings about it. Thanks for reading.
PS - Hey Baby Cakes, how is your little guy doing?
BonnieNova, I'm sorry for all the sadness and pain you are all going through. I hope that the c.s. works.
As far as checking for e.e. - the only way to do that is to have an endoscope done. They are going to want him on a high dose Proton Pump Inhibitor (PPI) for a bit first to rule out just bad reflux. Many times, they use prevacid. If they do a scope and find evidence of eosinophils, they will likely put him on a hypoallergenic formula - Neocate or Elecare.
If I were you, I'd definitely try the Neocate and remove all breastmilk for 2 weeks and see if that helps. Try using a Haberman feeder as suggested, and definitely pump/dump to keep you your supply. I'd also put him on a high dose of a PPI - try prevacid if you've haven't tried it before. Those are two things that they would likely do if it is EE anyway, so hopefully that is something that can help. The only other thing they do for EE is to do a swallowed corticosteroid like Flovent, or a pulmicort slurry. Some kids improve on just the diet change (in his case, Neocate), other kids do great with just the meds, and many kids do need a PPI, swallowed steroid, and diet change.
It's a tough road and I can feel your pain. I'm so sorry and sending you a big hug.
I know how tough it is to have a 3 year old and a young kiddo - my kids are 2 and 2.5 years apart. It's tough even when you don't have other issues going on. Can you get a break somehow, or at least someone to care for your youngest DS so you can have a little alone time with DS1? It might do you both good.
-devon
I want my baby to be happy. I feel bad for him that he had to be born to me. I wish I knew what to do for him.
I remember feeling that way too. Just remind yourself though, the majority of mamas would *not* be jumping through the kinds of hoops you are jumping through to make him happy and comfortable. He was born to the perfect mom for him. Hugs...it will get better. You will figure out what is going on. It might take time but you are doing absolutely everything you possibly can. Trust that he was meant to be with you, you are capable of meeting his needs even though it is hard to figure out what they are right now, and that he was born to you because you are the right mom for him.
PS - Hey Baby Cakes, how is your little guy doing?
After all that, you are such a sweetheart to ask how we're doing!! 
We are still puke covered but the zantac helps him with the pain. I so, so know how you feel -- that reflux scream is like no other. We'll probably have to up his dose as his next well baby, b/c he is gaining weight fast.
This won't help you (hm or maybe in someway it will) but I found that if I lay on my back and have him nurse on his belly (so he's fighting gravity) the milk doesn't hit the back of his throat and cause such sputtering/choking. I really believe swallowing so much air is a contributing factor to the reflux in our case.
As for your older toddler...I hear you. Oh, boy, do I hear you. You aren't alone in your feelings there either, and all I can say is THIS TOO SHALL PASS. 
I remember feeling that way too. Just remind yourself though, the majority of mamas would *not* be jumping through the kinds of hoops you are jumping through to make him happy and comfortable. He was born to the perfect mom for him. Hugs...it will get better. You will figure out what is going on. It might take time but you are doing absolutely everything you possibly can. Trust that he was meant to be with you, you are capable of meeting his needs even though it is hard to figure out what they are right now, and that he was born to you because you are the right mom for him.
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