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I think I know what I have to do... FINAL UPDATE

5K views 78 replies 28 participants last post by  Thing1Thing2 
#1 ·
I'm posting here as opposed to the breastfeeding challenges forum because I think many of you have dealt with reflux.

My first had reflux and I breastfed him until he was 2.5. I was on a strict elimination diet and it only barely took care of the problem. DS still cried and was up almost all night with reflux. It was a nightmare and I look back on it with dread.

When I weaned him at 2.5, the problems went away.

My new little guy (6 weeks) is showing signs of the same problem. Spitting up, arching back, crying all night, difficult feeds, projectile vomiting, overeating to soothe the throat. I have started an elimination diet and it seems that all I can eat without making him sick is rice and turkey. I feel defective in some way.

I have started supplementing with a hypoallergenic formula to help DS get some sleep. And it has helped (even though I don't want to admit it) At least I am still breastfeeding in the mornings. Now I find out that my doctor wants me to do a 2 week trial of only formula to see if he gets better. I know this may be the end of our breastfeeding relationship. If I don't breastfeed for 2 weeks, won't he forget how to nurse? I can't fathom doing this and possibly ending our nursing relationship. He still roots for the breast when he needs to be comforted.

As for me, I'm depressed. It may be due in part to decline in hormones. I keep thinking maybe there's something I'm missing. Maybe there's something I could take or something I could try that could possibly help. I don't want to just give up on breastfeeding and then realize later that I could have done something else.

I guess this is just a vent. I'm not sure there's anything more that can be done. I think I just need a little perspective. Maybe it's not as bad as I'm feeling it. DH doesn't understand and most of my friends are not AP. Thanks for reading...
 
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#2 ·
Sorry to hear what you are going through. We had issues with reflux but it was not to the extent that you have described. DS 1 used to cry and be up most of the night. I discovered that changing the way I breastfed helped; along with watching what I ate. I had an oversupply of milk so when I nursed because I changed breast too soon my DS was only getting the watery portion and not the fatty components. This caused him to nurse more often which also made his tummy upset. If you arent doing this already maybe nursing longer on one breast might help. At the time mt doctor suggested mixing the milk with rice ceral to keep it down but I found that just adjusting how I nursed made a big difference.

I am usually weary of doctors who suggest weaning and using formula. You might do a search on Kellymom and Jack Newman to see what they say about breastfeeding and acid reflux. At the end of the day what matters most of that your child feels loved wether breastfed or not.
 
#4 ·
Quote:
Originally Posted by BonnieNova View Post
As for me, I'm depressed. It may be due in part to decline in hormones. I keep thinking maybe there's something I'm missing. Maybe there's something I could take or something I could try that could possibly help. I don't want to just give up on breastfeeding and then realize later that I could have done something else...
I'm so sorry you are going through this. I don't know anything about reflux, that's not been one of our issues, but I do know the feeling of being completely overwhelmed and wishing that there were something, anything really, that I could do to fix the issues with my child and feeling inadequate as a mother.

I have a child on the autism spectrum, and the hardest part of it for me has been making peace with not knowing. Not knowing if I'm doing the best things for her, not knowing if I'm doing everything I can, not knowing how things will turn out, just not knowing.

I think the situation you are in would be challenging enough emotionally without hormone swings, but between having had a baby 6 weeks ago and then having shifts in BFing, your hormones must be taking you on a real roller coaster. Add some serious sleep deprivation in there, and its a recipe for intense negative feelings.

The way our kids turn out is a mysterious mix of so many things -- how they came wired, the millions of decisions we make in parenting, and all sorts of random events that we don't have any control over. BFing may end up being a decision you get to make, or it may fall into the category of random events we don't have any control over. But so, so many things go into who our child eventually turns out to be that one thing, even something a wonderful and important as BFing, is still just one thing.

I had really wanted natural child births with both my kids, and both times ended up will all sorts of interventions. Part of me felt like my body was some how defective as a woman. It took me a long time to let go of that, and just be here. Just be here -- holding my kids and watching them grow up and doing my best for both of them. I think of it sometimes as Radical Acceptance. Just looking at what is, and then just accepting it. Letting the negative feelings wash over me, and let them keep going. Not drowning in them.

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. Let how the BFing works out to be a detail in life long relationship that you will have with him.

Peace
 
#5 ·
Hugs, mama. I had a super colicky refluxing baby who ended up being sensitive to literally 20 foods. Have you tried Zantac or any medications yet? Personally, I think I would be up for trying medications and continuing on elimination diets before doing formula. Many foods take several weeks to clear, so it is possible that you're not getting the full effect if he's only six weeks old. You might want to post in the Allergies forum as well. Not that I think formula is horrible or anything, because I did occassionally use it with DS when I had supply issues early on, but part of me would be really worried that in time the formula would backfire even worse than breastfeeding. If you do decide to try it for a couple of weeks, I'd try to do a lot of pumping in that time to keep your supply up. Good luck.... It really sucks to see your baby struggling like that and not feel like you can help.
 
#6 ·
Couldn't read and not reply. Some place on MDC lives 30+ page thread of the first year of my 3rd DDs life. My 1st BF for 4 yr.and My 2nd child had severe reflux but she nursed to 2.5 yr. 3rd came along....screaming 20 hr a day, never slept, constant pain....I cut foods, tried everything, every medication, she had test after test as the meds didn't help. I removed everything but turkey, squash and quinoa. No change. It was a nightmare. I fought my Drs about formula trial. Finally did Alimentum for a a few days....helped a little, but far from great. Back to BF. Eventually we decided to do a week trial of Neocate, a prescription amino acid only formula. I can't even articulate the level of betrayal I felt (from my body,nature, whatever), the devastation of fighting so hard, starving for months, and ending up here. It was one of the hardest decisions I made. After 1 week on Neocate, I had a new child. I kept on the elimination diet thinking we would "heal" her gut then she would tolerate my milk..because babies don't just Not Tolerate mom's milk. After she was on Neocate a bit I went back to BFing with "clean" milk. A week later she was violently sick again, reflux and vomiting raging. They loaded her with reflux meds, stomach emptying meds, antihisitmines to try and relax the GI system, antispastoics, etc. No dice. Back to Neocate. Happy and wonderful baby. My GI was like...ok, cured! I was like....not good enough, what is wrong with her. Months later, food trials later, BF trials later, Drs later, Specialist later.....she was diagnosed with eosinophilic esophagisits. Within a couple months my 2nd daughter (the refluxer who seemed Cured) started refluxing again, having bad stomach pain, not sleeping, and a scope revealed she had the same.

DD3 is now 17 months. I still struggle with the fact she doesn't nurse, but there is no alternative. I could live on nothing and my milk would still have some partial chains of natural protein in it that would make her sick. She still lives on Neocate solely. DD2 is almost 4 and is almost symptom free after eliminating dairy, soy, egg, wheat, fish, nut, beef, corn and citrus.

My post is 2 part....one, this is getting misdiagnosed often as reflux that does not respond to regular treatment. And 2, if you have to go the formula route, please please please do not beat yourself up. I never thought I would say that. I spent a yr of my DDs life saying that. Neocate has kept her from vomiting all day, being FTT, and off a feeding tube for now.

Feel free to PM if you'd like, and good luck. ;)
 
#7 ·
Quote:
Originally Posted by Azik's mom View Post

Sorry to hear what you are going through. We had issues with reflux but it was not to the extent that you have described. DS 1 used to cry and be up most of the night. I discovered that changing the way I breastfed helped; along with watching what I ate. I had an oversupply of milk so when I nursed because I changed breast too soon my DS was only getting the watery portion and not the fatty components. This caused him to nurse more often which also made his tummy upset. If you arent doing this already maybe nursing longer on one breast might help. At the time mt doctor suggested mixing the milk with rice ceral to keep it down but I found that just adjusting how I nursed made a big difference.
I wish it were that easy :( I was doing 4 hour block feeding, which is nursing for 4 hours on only one side. He was definitely getting the hind milk. Reflux can be caused by many things - and food allergies is my suspicion. I have considered mixing my breastmilk with rice. I know he's only 6 weeks but it has to be better than formula. I also read something about mixing the breastmilk with gelatin. Weston A Price has a homemade formula and this is one of the ingredients. Maybe thickening the feed will help.

Quote:
Originally Posted by beachcomber View Post

I agree with the PP. Do what you feel is best for your little one. Don't give a thought to opinions and experts. Know you're a loving Mama ...
Thank you. He knows I love him dearly. We have a family bed and last night I realized as he slept that we will still have our cuddle time.

Quote:
Originally Posted by Linda on the move View Post

I had really wanted natural child births with both my kids, and both times ended up will all sorts of interventions. Part of me felt like my body was some how defective as a woman. It took me a long time to let go of that, and just be here. Just be here -- holding my kids and watching them grow up and doing my best for both of them. I think of it sometimes as Radical Acceptance. Just looking at what is, and then just accepting it. Letting the negative feelings wash over me, and let them keep going. Not drowning in them.

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. Let how the BFing works out to be a detail in life long relationship that you will have with him.
Thank you for your encouraging words, Linda. That is a very nice way of looking at things. I had interventions with my first, but this one was the home birth I always dreamed of. We had 2 weeks of heaven after he was born. We were wondering what we had done to have such an easy baby. Then the screaming started. I felt like I had done something wrong, and I held back from letting myself experience the feelings of frustration and anger. I need to work on the acceptance.

Quote:
Originally Posted by APToddlerMama View Post

Hugs, mama. I had a super colicky refluxing baby who ended up being sensitive to literally 20 foods. Have you tried Zantac or any medications yet? Personally, I think I would be up for trying medications and continuing on elimination diets before doing formula. Many foods take several weeks to clear, so it is possible that you're not getting the full effect if he's only six weeks old. You might want to post in the Allergies forum as well. Not that I think formula is horrible or anything, because I did occassionally use it with DS when I had supply issues early on, but part of me would be really worried that in time the formula would backfire even worse than breastfeeding. If you do decide to try it for a couple of weeks, I'd try to do a lot of pumping in that time to keep your supply up. Good luck.... It really sucks to see your baby struggling like that and not feel like you can help.
I tried Zantac with my first and it didn't work. We have corn allergies and zantac has corn in it. I always wonder if they made his problem worse. I was also a regular poster in the allergies forum, trying to figure out the problem. I can't believe I don't have this figured out after almost 3 years with my first. I never thought my second would have the same problem. I'm still pumping to keep my supply up.

Quote:
Originally Posted by DeChRi View Post

Couldn't read and not reply. Some place on MDC lives 30+ page thread of the first year of my 3rd DDs life. My 1st BF for 4 yr.and My 2nd child had severe reflux but she nursed to 2.5 yr. 3rd came along....screaming 20 hr a day, never slept, constant pain....I cut foods, tried everything, every medication, she had test after test as the meds didn't help. I removed everything but turkey, squash and quinoa. No change. It was a nightmare. I fought my Drs about formula trial. Finally did Alimentum for a a few days....helped a little, but far from great. Back to BF. Eventually we decided to do a week trial of Neocate, a prescription amino acid only formula. I can't even articulate the level of betrayal I felt (from my body,nature, whatever), the devastation of fighting so hard, starving for months, and ending up here. It was one of the hardest decisions I made. After 1 week on Neocate, I had a new child. I kept on the elimination diet thinking we would "heal" her gut then she would tolerate my milk..because babies don't just Not Tolerate mom's milk. After she was on Neocate a bit I went back to BFing with "clean" milk. A week later she was violently sick again, reflux and vomiting raging. They loaded her with reflux meds, stomach emptying meds, antihisitmines to try and relax the GI system, antispastoics, etc. No dice. Back to Neocate. Happy and wonderful baby. My GI was like...ok, cured! I was like....not good enough, what is wrong with her. Months later, food trials later, BF trials later, Drs later, Specialist later.....she was diagnosed with eosinophilic esophagisits. Within a couple months my 2nd daughter (the refluxer who seemed Cured) started refluxing again, having bad stomach pain, not sleeping, and a scope revealed she had the same.

DD3 is now 17 months. I still struggle with the fact she doesn't nurse, but there is no alternative. I could live on nothing and my milk would still have some partial chains of natural protein in it that would make her sick. She still lives on Neocate solely. DD2 is almost 4 and is almost symptom free after eliminating dairy, soy, egg, wheat, fish, nut, beef, corn and citrus.

My post is 2 part....one, this is getting misdiagnosed often as reflux that does not respond to regular treatment. And 2, if you have to go the formula route, please please please do not beat yourself up. I never thought I would say that. I spent a yr of my DDs life saying that. Neocate has kept her from vomiting all day, being FTT, and off a feeding tube for now.

Feel free to PM if you'd like, and good luck. ;)
Thanks for posting. So sorry to hear about what you had to go through. DS is on the Alimentum now, and we have seen some real improvement - not completely better, but I have also been BFing him in the mornings. I was also considering the Neocate, because he has this raspy breathing and high pitched squeak he sometimes does. It worsened when he started on the Alimentum. I am going to look into the symptoms of eosinophilic esophagisits. I also remember seeing your post a while back, I'm going to have to look it up again.
 
#8 ·
Quote:
Originally Posted by BonnieNova View Post

I felt like I had done something wrong, and I held back from letting myself experience the feelings of frustration and anger. I need to work on the acceptance.
I think the first step of acceptance is to feel how we feel about the situation -- if that is grief, anger, frustration, etc.. For me, fear of drowning in those feelings is ironically what sometimes keeps me holding on to them. I have to trust that they can wash over me and that I won't drown.

I think that part of the dilemma in processing this stuff is that minimizing doesn't help, and that so often those around us -- spouses, moms who aren't APing, doctors, fail to understand how it important it was and why it was important, so they tend to squish our need to grieve.

Ultimately, we can let all these heavy feelings go, but not because BFing (or natural childbirth or whatever it is) wasn't important. We can own exactly how big they are, and what a lose they are while still moving forward in our lives with a feeling a peace.

One of my favorite quotes: "When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, trust that one of two things will happen: Either you will be given something solid to stand on or you will be taught to fly."
 
#9 ·
I strongly recommend the book "Colic Solved" by pediatric gastroenterologist Bryan Vartabedian. The book is pro-breastfeeding, but also pro-meds.

I've been through this nightmare myself, and my heart goes out to you.
 
#10 ·
Thanks Linda, love the quote! So true!

Fay, thanks for the book suggestion. I'm going to order it from my library.

Got a call from an old friend today. She works for a cranio sacral therapist. She wants me to try it out. I have an appointment for next Tuesday. I'll keep you posted!

(Why can't I find the fingers crossed smiley! Must be sleep deprivation!)
 
#11 ·
Quote:
Originally Posted by BonnieNova View Post

Got a call from an old friend today. She works for a cranio sacral therapist. She wants me to try it out. I have an appointment for next Tuesday. I'll keep you posted!
Glad to hear the Alimentum is helping! I think the cranio sacral is a great idea. We tried it with DS with no improvement, but it did help a friend's baby quite a bit. It has helped me with some health issues too and is so gentle. One other thought is seeing a chiropractor as well. I wish I had done this with DS when he was younger.
 
#12 ·
I know it's difficult when your hormones and emotions are high but try to think things through.

Human milk is always better than ANY formula. It's your baby's right to have your milk. You don't have to give formula.

If your 1st child's problems went away when he weaned you didn't need to be on an elimination diet. What an elimination diet does is keep proteins or other allergens from those foods out of your milk so it won't cause an allergic or sensitivity reaction in the child. If you weaned and the child could eat those foods then you didn't need to be on that elimination diet. There may have been other things that you could have done to help with his digestive issues. Use only one breast a feeding. Laid back breastfeeding.

The formula that you gave to "help Ds sleep" could be causing the digestive problems. It can take a month for a normal baby's digestive system to recover from one bottle of formula. If your babies have sensitive systems any sugar water or formula at the hospital or the formula that you gave could have set off problems. It is much more reasonable to think that this has caused the problem than you can only eat rice and turkey. Almost all women can eat everything.

I suggest reading Sears Fussy Baby Book and The Happiest Baby on The Block. There is a Happiest Baby on The Block DVD (skip the pacifier parts). Go to a LLL meeting or call a LLL Leader. Call a LC. Talk to someone before you wean your baby.
 
#14 ·
Quote:
Originally Posted by foreverinbluejeans View Post

I know it's difficult when your hormones and emotions are high but try to think things through.

Human milk is always better than ANY formula. It's your baby's right to have your milk. You don't have to give formula.

If your 1st child's problems went away when he weaned you didn't need to be on an elimination diet. What an elimination diet does is keep proteins or other allergens from those foods out of your milk so it won't cause an allergic or sensitivity reaction in the child. If you weaned and the child could eat those foods then you didn't need to be on that elimination diet. There may have been other things that you could have done to help with his digestive issues. Use only one breast a feeding. Laid back breastfeeding.

The formula that you gave to "help Ds sleep" could be causing the digestive problems. It can take a month for a normal baby's digestive system to recover from one bottle of formula. If your babies have sensitive systems any sugar water or formula at the hospital or the formula that you gave could have set off problems. It is much more reasonable to think that this has caused the problem than you can only eat rice and turkey. Almost all women can eat everything.

I suggest reading Sears Fussy Baby Book and The Happiest Baby on The Block. There is a Happiest Baby on The Block DVD (skip the pacifier parts). Go to a LLL meeting or call a LLL Leader. Call a LC. Talk to someone before you wean your baby.
FIBJ,

I'm sure you mean well... but your post is harsh on the OP and not accurate. Also, I'm sure she knows what an elimination diet is.
 
#15 ·
OP I wish you the best for your babe, and you just have to do what you think is best. We went the Zantac/Prevacid/ed route with very little success, and at 17 months we're just starting to get some sleep, and still struggling with the foods and weight gain.

I wish I'd made changes sooner.
 
#17 ·
FIBJ, I feel pretty safe in saying that if her baby could speak, he would let his mother know that he wanted to eat whatever made him feel better. Yes, BFing is great. Being well and feeling good and being pain free is even better. This isn't colic, this isn't being fussy, this baby clearly has a medical problem. If the baby needs formula to not be sick then that is what the baby deserves to have.
 
#18 ·
BonnieNova, I had premature endings to nursing with both of my children. It was very sad and hard to give up what I wanted so desperately. They are now 9 and 12 and are wonderful, healthy, very attached children who want to snuggle lots. Food is only one way in which we nurture our children, and bottle feeding can be very warm and snuggly too. I'm still involved with an online community for women with low supply and I've seen lots of women go through all kinds of struggles, and some babies do go back to the breast readily. I would encourage you to try to bottle feed in similar positions to nursing so that he associates being turned into your body with feeding, and to make all that lovely eye contact as well. Good luck to you. You are a brave and strong mom doing what's right for your child.
 
#20 ·
Froreverinbluejeans, I'm thinking that you have not had serious problems with reflux, colic, digestive issues or a baby screaming all night as you walk him around in a sleepywrap and wish you could do something *anything* to help him not be so miserable. And yes, I have tried all the advice you have offered and more. I breastfed my first child through all of this, and there are tons of posts on here from my experience of trying everything I could to help my first child. I just want my baby to have a good quality of life, even if it means sacrificing something that is important to me.

Quote:

Originally Posted by rainbow_mandala View Post

Quote:

When I read this comment, I got tears in my eyes because I was able to feel just how heartbreaking it can be to let go of the nursing relationship...but, at the same time, be able to feel grateful for what you still have, like cuddle time. I haven't experienced too many difficulties with breastfeeding with either of my kids, and I am aware of how fortunate I am. I haven't been able to fully understand just how heartbreaking it can be to have to let go of it way too soon, though...until this comment you made. Something about it sparked this awareness inside of me that woke me up to the reality of just how precious it truly is...it's not that I don't know how wonderful it is, but sometimes it's only when we lose something do we see how much it means to us, and you have helped me see that more than I ever have before.
It's amazing how thankful you become of the little things. I find I am appreciating my time with him more, holding him and looking into his eyes. He roots for the breast and it makes me cry and then I realize how blessed I am to have a healthy, happy baby.

Got my period back today, well spotting, really. I cried because with my first DS, AF didn't come until 2 years old. It's wierd because I feel it's too early, like I'm being rushed for life to get "back to usual". I am trying to remember that the experience is different with each child and to keep my perspective.

Quote:
Originally Posted by joensally View Post

BonnieNova, I had premature endings to nursing with both of my children. It was very sad and hard to give up what I wanted so desperately. They are now 9 and 12 and are wonderful, healthy, very attached children who want to snuggle lots. Food is only one way in which we nurture our children, and bottle feeding can be very warm and snuggly too. I'm still involved with an online community for women with low supply and I've seen lots of women go through all kinds of struggles, and some babies do go back to the breast readily. I would encourage you to try to bottle feed in similar positions to nursing so that he associates being turned into your body with feeding, and to make all that lovely eye contact as well. Good luck to you. You are a brave and strong mom doing what's right for your child.
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. If this cranio sacral therapy works I'm willing to do whatever it takes to teach him how to latch again.

Quote:
Originally Posted by savithny
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#21 ·
Quote:
Originally Posted by Linda on the move View Post

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.
 
#22 ·
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.
 
#24 ·
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.
 
#25 ·
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.
 
#26 ·
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.
 
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