Is it worth it to keep trying? - Mothering Forums

 
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#1 of 7 Old 10-05-2013, 03:05 PM - Thread Starter
 
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I had a bilateral mastectomy in 2010. As you can imagine, exclusive breastfeeding is not an option. The midwives never gave me the chance to nurse, despite spending my entire pregnancy telling them that I wanted to try using the at-breast supplementer and being told that this wouldn't be a problem. The lactation consultant we saw the first week yelled at us and told me to give up on breastfeeding, then shoved a bottle down his throat. (she had us completely destroy is ability to say when he's full- he ate until he threw up for the first month of life, it was heartwrenching) I think she was angry we went through with the home birth, I can't figure out any other reason for her actions.

 

My baby's 5 months old. We've been trying to get baby to latch for the entire time on our own with very minimal results.

 

Breastfeeding is very important to me. My mom breastfed me long enough that I remember doing so. I always knew this is what I wanted to do, I want to give my babies the option to breastfeed as long as I did. Even though I needed the surgery, I cried that I wouldn't be able to breastfeed my children.

 

I've been given the contact info of a lactation consultant who takes insurance and says she understands our situation and may be able to help. But she's a good ways away and it's very difficult to get the time. Also, as the baby is 5 months and we wouldn't be able to exclusively breastfeed due to scheduling, there's really no guarantee and it'll be very difficult. I don't know what it'll do to me if we go through the trouble to see the lactation consultant and still fail.

 

I don't know if it's worth it to keep trying. Almost every time we try, the baby gets very frustrated and upset. It's breaking my heart to not be able to, and I feel like it'd be better for me to just accept that it wasn't meant to be, hope that next time will be different, and do what I can to make my baby happy in ways I actually can. If there were a guarantee that we'd get the baby to the breast and all would be well, I'd jump at it- but there's not.

 

I don't know what to do.


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#2 of 7 Old 10-05-2013, 04:51 PM
 
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I just wanted to step In with a tiny bit of hope. My baby is five months old as well. We just finally cut out supplementation this week. I don't have the same breastfeeding issues as you, but I have had a hard enough time that I formula fed my older child. Plus my son spent 16 days in the NICU during which time he was too sick to latch at all. But we made it. Step by step and inch by inch we made it to our goal.

I realize your goal and my goal are not the same, but maybe my experiences carry over a bit.

First things first: it IS okay to stop. It IS okay to set new goals. My daughter was bottle fed and I still have beautiful feeding memories. I still snuggled up to her skin to skin, I still watched her doze off all milk drunk, we still developed an amazing closeness. We just did it while holding a bottle. I was sad at first, but I'm okay. She's okay. We're okay. Now that she's older she still pretends to nurse her dolls and feels its normal, even though that's not how she was fed herself. It's a nonissue. If you follow that path, you will be okay. Sometimes as parents we need to alter our goals on the fly, and unfortunately sometimes it's painful to do so.

On the other hand, with my son I decided whatever steps we could manage would be good enough. I set small goals at a time. If I could pump half his bottle feed, it was enough. If I could get him to use the supplemental nursing system, it was enough. Every day I just did the best I could do. Even if it was an all formula day I knew he was loved and nourished just fine. This resulted in exactly what we needed, a relaxed mom and a relaxed baby, and my little goals became easier and easier to accomplish. In my case that meant finally exclusively breastfeeding after five months.

Either way, what I'm trying to say is that whatever you choose to do you must be kind to yourself. Your baby will get fed and he will be happy and healthy. How you choose to do that is really just a matter of managing goals and maintaining sanity. Keep that in mind when you make the LC decision.
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#3 of 7 Old 10-05-2013, 05:58 PM
 
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Skelly, I just wanted to say that your post was so right on and I too needed to read that today as we struggle with low supply for the second time and I wonder if it's worth all the hard work to fight for only a piece of what comes so easily to others. At the end of the day, I ask myself if I gave up tomorrow, could I live with that? So far it's been "no". The day it is "yes" I will turn in my Lact-aid and Domperidone, look at my daughter, and especially my older son who really is just fine despite it all and say that I truly gave all I had.

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#4 of 7 Old 10-10-2013, 07:52 PM
 
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Ditto to what Skelly said!  So often we feel like failures because we are not the perfect breastfeeding mama!  After EBFing five children, my #6 refused to latch.  Whenever I tried to nurse her, she cried like I was trying to poison her!  I dreaded forcing her to do something that I wanted her to do.  How was all that stress affecting our relationship? All I could do was accept the things I could not change-and that was she wanted a bottle.  So, I pumped and bottle fed for six months and then switched to formula when I could no longer stand pumping.  I am just as attached to her as I am to the five that came before her.  She is just as healthy.  Thriving.  Happy.  You can still have those sweet, close snuggles with your baby AND use a bottle.  Don't be hard on yourself.  Seriously, when your little one is three or five or 11 or 25 years old, this won't seem as big of a deal as it is now.  I promise. 

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#5 of 7 Old 10-12-2013, 09:53 AM
 
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You need to decide what will work best for you. If you really want to feed your baby at the breast, you still can. Has this baby been on bottles for the last five months? If so it will be a challenge, but it probably can be done, IF you want to do it.

 

The actions of that first LC were intolerable! I'm a Lactation Consultant and in more than 20 years in practice I have never yelled at a client. Many clients make choices that are choices I might not make, but I'm not there as their "lifestyle consultant," I'm just there just to help them with breastfeeding as far as they want to go. I don't pin MY personal worth on what clients decide to do, nor do I take their choices personally.  Where did she even GET the bottle? I have never carried a single bottle in my LC Bag ever. No good LC carries bottles in her bag. There are much better ways to get supplement into a baby who needs food now! Starting with feeding cups, spoons, syringes etc. I have all these in my bag, but I have never carried a bottle in my bag, I don't even have them in my house. I wouldn't actually trust an IBCLC who carries bottles in her gear bag. She may not trust her own ability to get babies on the breast or.... something isn't right here.

 

Why would an LC "get mad" because you had a home birth? That isn't even her territory, nor was it her choice. You do have the choice, if you want, to contact the IBLCE (International Board of Lactation Consultant Examiners www.iblce.org ) and report her for unprofessional treatment. (I am assuming she is IBCLE Board Certified? If not, then she isn't a Lactation Consultant. Sadly, for a few dollars less than a real LC visit, people with inferior qualifications, education and experience but some will tout themselves as "lactation specialists" and they usually do an abysmal job because they are not trained to actually see and treat clients. .)  If your midwife or your partner was present when this LC yelled at you, shoved a bottle down your baby's throat and did it because she had some personal issue about how you gave birth, they can act as witness, she was acting very unprofessionally and NEEDS to be reported. No good International Board Certified Lactation Consultant who is in good standing with the IBLCE behaves like this.  She can make us all look bad, not to mention hurting mothers and babies!  You can also go to the IBCLE site and make sure she is Board Certified, if not, still report her to the IBCLC as a fraud. Even if she is Board Certified, yelling at clients is never acceptable and is against our Code of Ethics.

 

Also, your midwives behavior is a bit suspect. WHY would they not allow you to use the SNS right after the birth? This is done all the time.

 

Can I give you a tip at choosing health care providers? You said, "We found an LC who will take our insurance." Problem is, when you choose your HCPs exclusively on "affordability" or "who takes our insurance directly"  you often end up with a much smaller pool of people to choose from (as you found out the first time with a horrible experience most likely with an LC (or someone who wasn't) who was seeing clients as a lower price than a Board Certified LC would. . I'd talk to people and get a GREAT lactation consultant whether or not she takes your insurance. Most LCs do NOT take any type of insurance, because of the overhead and because most insurance companies won't take us individually and don't want to mess with thousands of small businesses, as most LCs work for. Hospital based LCs tend to work quickly but may leave a lot of work undone, because of their time restrictions. They may take insurance, but in many cases, you are getting a 15 min "consultation" when a Private Practice LC will spend at least a few hours with you, then give you a copy of the Super Bill and YOU submit it to the insurance. As most insurance companies will reimburse for LC visits, you now have a better choice of providers.

 

As your situation is unusual, you NEED an LC who has worked with women post mastectomy before and someone who will spend as long as it takes to get the baby on with the SNS and do several follow up visits and regular weigh ins. When I put a baby on an SNS due to serious milk supply issues, I weigh them every day or every other day. No good LC would use an SNS on a mom with severe breast injury and not do very frequent weigh ins. You need the BEST, not the cheapest! 

 

It sounds like you've had problems with both your midwives and your LC, none of them listening to you and helping you the way you wanted. Better choice, and often that may require seeing the BEST HCPs and your then submitting the bills later to your insurance is going to give you a much better pool of HCPs to choose from so you get the BEST, not just the most convenient.

 

I've worked with women who have had partial and full unilateral mastectomies and lumpectomies. One of my best friends could only nurse on one side because the radiation done during her cancer treatment destroyed the molecular structure of the ducts in her right breast which had also been subjected to a lumpectomy. She fed her baby exclusively on the left and he did well and didn't even need supplementation. However, you said you had a bilateral mastectomy? That is the removal of both breasts. What amount of tissue is left?

 

I can't address your issue online, as I don't know how much breast tissue you have left. I'm assuming with a bilateral mastectomy, that ALL of your breast tissue was removed and you had some sort of reconstruction? If that is the case then nearly all of the milk the baby would get would be via SNS, but it can be done. I've seen it done, I've helped women nurse on reconstructed breasts, it's a challenge, but some women really to want to nurture at the breast. It's hard work at first, but these moms swear by it and say it was worth every hour of hard work. Breastfeeding is a LOT more than just milk, and if you want that for you and your child, find a good Board Certified Lactation Consultant who will do best by you, do frequent weigh ins and who you can trust. Even if you have little to no original breast tissue left, you can nurture with the breast with a good SNS or Lact Aid device.

 

Good luck and Blessings. :goodvibes 


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#6 of 7 Old 10-12-2013, 12:13 PM - Thread Starter
 
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The baby has been on the bottle- we've tried getting them to use the at-breast supplementer on our own, but it's been difficult. We're working with trying to understand how to use the supplementer AND trying to teach the baby to latch at the same time.The baby's latched a handful of times, and still tries to latch, but generally gets frustrated. There've only been 2 times that the baby latched and actually ate.

We had the bottles just in case. Of course, they were the wrong bottles- for an older baby. Not that she bothered to check. The entire pregnancy, people only told us about breastfeeding and even when I pointed out it may not work, no one ever told us about the different types of bottles out there. It took a really awful month of the baby throwing up after every meal before we realized we had to get slower-flow bottles, and then another month before we tried anti-colic bottles...  We've been through about 6 types of bottles to find the kind of bottle that works for us.

The LC is with a hospital. I'm almost positive she's an IBLCE, if she's not I'm very concerned by that hospital. We saw her while I was pregnant and she talked up what the hospital does after delivery in the hospital. I don't know if hse really was angry we did a home birth or not- I just can't think of any other reason for her attitude. My partner was there.

I agree with you that the LC really should have tried something else if she was worried about food. I still don't know if the concern was legitimate or not- we offered food every hour and baby took his fill, he was filling enough diapers, passing meconium, he wasn't showing any signs of ill health. When we started feeding as much as she told us we should, he kept throwing up the entire feed.

I feinted after the birth and was very weak, I think that the midwives had different priorities because of that and we had a feeding cup for the baby that was easier to use. Apparently the midwives who attended had never dealt with someone who'd had surgery or needed a supplement so weren't very familiar with it, either.

Taking insurance is important for us. For people whose option is "breastfeeding or formula feeding", I can understand taking the risk of spending money on breastfeeding given how much formula costs. But we still have to pay for formula and really can't afford the price of hte lactation consultants I've found. Hopefully insurance reimburse us, but I'm not sure and it's a risk I really can't take. The LC is through this- http://www.breastfeedingresources.com/ It doesn't appear to be a hospital and have the same problems, they claim to usually spend 2 hours on the first visit.

There's very little tissue left. The LCs I've spoken to have expressed concern that there may not be enough tissue for the baby to latch onto properly.

Thank you for your time and advice. :)


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#7 of 7 Old 12-17-2013, 08:44 AM
 
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Remember that breastfeeding is a wonderful way to nurture and bond with a child, but it's not the only way to do so.

 

In your situation, there isn't even a chance of the baby getting a few teaspoons of breastmilk along with the formula. The point of the SNS is only for bonding, and at this point, it seems to be a major source of stress.

 

I would give up on the SNS and go with "bottle nursing." Lift your shirt, unlatch your bra, and feed  the bottle while the baby's cheek rests against your breast. Never prop a bottle nor let him/her hold it himself/herself. To paraphrase Dr Sears, make sure there's a person at both ends of the bottle.

 

I'd also try to work on getting him/her to latch on for non-nutritive sucking. The LC may be of help with this part, if you choose to go to her for help. Offer the breast after s/he's had his/her fill at the bottle. Because, really, the comfort sucking (aka "using you as a pacifier") is your goal here. If you want to nurse for several years, then it's going to be for comfort, not for milk anyway. I'd ditch the SNS and focus on cuddling and getting the baby to latch on "as a pacifier" and then hopefully you'll be able to  comfort-nurse for as long as you both want to.


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