Wednesday, January 21, 2009

Breastfeeding woes

Tuesday was another day at Primary Children's. We've been concerned about Max's feeding habits for some time. When he nurses, he pulls off choking, coughing and sputtering at least 4-5 times every feeding. The geneticist referrred us to get a swallow study done to make sure he wasn't aspirating breastmilk into his lungs. As we did the study yesterday, it was clear that he was aspirating, even though he was sitting upright. The technicians and the speech language pathologist all said that the problem is probably significantly worse when he's nursing. The official recommendation is that I stop breastfeeding immediately to protect him and lessen the risk of aspiration pneumonia and damage to his lung tissue from aspirated fluid.

Now, anyone that knows me well knows that I love breastfeeding. I'm a big advocate. I have been a card carrying memeber of La Leche Leaugue, and have nursed my babies everywhere, without shame. I've participated in real and virtual nurse-ins, and I nursed my younger daughter until she was two and a half. I've already overcome serious latching problems with Max, and felt that if we could just get the choking under control that we would be home free. I am once again a big, blubbery mess of emotion.

I have absolutely no desire to bottle feed. All the doctors recommend that I pump and thicken the breastmilk and then bottlefeed, since he wasn't having problems drinking a thicker liquid. Their attitude is "He's still getting breatmilk!" But as anyone who has nursed long term can tell you, breastfeeding is not just about the milk production. Its about the convenience of having a ready-made perfect meal anywhere you are. Its about being able to comfort a baby or toddler who's frustrated, overstimulated, or having a bad day. Its about being able to roll over in the middle of the night, lift up your shirt, and latch the baby on, all while being half asleep, then having both of you fall peacefully back asleep.

This week has been all about researching and trying to find a way around the bottlefeeding recommendations. I've contacted a lactation consultant who told me this was way out of her league. I've posted on internet boards, and have had a myriad of opinions thrown at me. I've even emailed back and forth with Jack Newman, arguably the world's expert on breastfeeding. His advice was to continue breastfeeding, and while I'd like nothing more than to throw everyone else's opinions out the window, I can't do it based ont he opinion of one Doctor, over the internet, who hasn't even seen my child.

We saw the pediatrician on Friday. One thing Dr. Newman suggested was a lung function study, to see if there had been lung damage from aspiration. The pediatrician was against that because it would require a CT scan, which is way more radiation than she or we are comfortable with. She offered to consult with a pulmonologist. She called me back later that day to tell me the pulmonologist said the same thing- there was just too great a risk of damage to his lungs from aspiration for us to continue breastfeeding. The last reccomendation is that we go see an ear noe and throat specialist at Primary Children's to have him evaluated, because there's a possibility he may have an undiagnosed cleft palate. In a weird sort of way, I'm actually hoping that this is what's going on, because it would mean that it was something that could get fixed, possibly when he has the other surgery, instead of just a nebulous "oh, he'll grow out of it sometime."

So as soon as the thickener arrives via ups this week, we're set to become a pumping and bottlefeeding family. I have such mixed feelings about this. I know, intellectually, that this is what is best for my son and his health. But the natural mama in me- the part that homebirths, refuses vaccinations, cosleeps and breastfeeds long term, all against the wishes of Doctors- wants to think that the Doctors are blowing everything out of proportion and that we should just keep doing what we are doing.

But the truth is, (and I've only just started to admit this to myself,) Max is miserable nursing. He chokes and coughs almost constantly, and his eyes are always red and watery. There are some times he screams in pain while he's nursing, and there are many times when I think that he's quitting before he's full just because he's so frustrated. Its not fair of me to insist that he continue nursing this way, not if there's an alternative.

So in a few days, we'll be going from this

and this...

and this...

to breastpumps and bottles. I'm trying to have the best attitude about it that I can. I'm trying to remind myself that I'm not a failiure and that we did everything that we could. The doctor even said that some kids start to grow out of aspirating around the six month mark, so we may be able to try again then. So all hope for a normal nursing relationship is not lost. But man, when I'm pumping, thickening and bottlefeeding at three in the morning that may be hard to remember.


  1. Oh Stacy - I'm so sorry. I can imagine how hard that would be for you. Words are trite, but really, I can imagine how deeply sorrowful you are now.

    It seems like the best to hope for now is that he'll be able to resume nursing in the future.

    My friend had three babies who were born very early (28-32 weeks). Due to their NICU time, none of them came home able to breastfeed. She pumped and tried latching every. single. day. One of the babies didn't learn to nurse until 7 months old. My point is - if her baby was able to learn to nurse for the first time after 7 months, I bet Max will be able to pick it back up if that becomes a possibility in the future.

  2. Hey! Welcome to the blog world. I'm so sorry about all the stuff you're going through with Max. We'll keep you in our prayers. You know you can call me anytime you need to vent! Jodi

  3. I'm so sorry that Max is having issues. It is kind of weird to realize that what you want isn't neccesarily what is best for your baby. I mean we're the mom, we're supposed to know what's right.
    I hope he can outgrow it soon or you can figure out what else might be wrong. Good luck. Just remember, we have a date in 2 years.

  4. It would be so hard for me to have a Doctor tell me I can't nurse my baby. It's funny how they don't seem to realize that there are SO many other things about breastfeeding that are amazing! I can't imagine the convenience factor being taken out of the breastfeeding equation. I'm glad you are confident in your decision to pump and thicken.
    The pictures are beautiful.. the made me a little teary eyed....
    All we can do for our kids is what we think is best.. no regrets!

  5. Hugs. I'm so sorry. I understand wanting to bf will all your heart and not being able to. I hope you can get lots of support to get through this. You will get through it. It may really suck for awhile. Isn't like like that? I'll keep thinking of you guys.
    And your blog is very cute, btw!

  6. Oh Stacy I'm so sorry. This is really really hard, and I'm sure I would be feeling exactly as you are right now. Boy, life just dishes it out sometimes. It really just sucks.

    BUT I know you're strong, I've seen it first hand, so I have no doubt that you'll get through with grace as always.

  7. I'm having such a difficult time understanding how not breastfeeding is a solution to this problem! I am sorry that you are struggling with this and hope that you are able to either find an alternative or make peace with such an unpleasant situation!

  8. Alisa, its because he aspirates all thin liquids, including his own saliva. But, when we did the swallow study, he did significantly better with thickened liquids. So its not the breastfeeding that's the issue so much as it is that he has to have thickened liquids in order for it to not end up in his lungs.

  9. Oh Stacy you are breaking my heart! I'm sooo sorry hon. I myself can imagine how painful it must feel. (((HUGS)))

  10. Stacy... I am having horrible flashbucks to my first weeks with Kaitlyn. While I wasn't quite as "natural" as you (hospital birth with epidural, thank you very much), breastfeeding was never a question or issue and I assumed it would be exactly what would happen. When she ended up not being able to exclusively breastfeed, I was devastated. I had attached so much of my self esteem to breastfeeding, and felt like a failure. To be honest, even though intellectually I know I did everything possible and ended up making the best decision for my child (although it wasn't the best decision for me), I still feel guilty and wonder if I could have done more. So DON'T DO THAT TO YOURSELF. What it comes down to is that you HAVE to do what's best for your son. This is what he needs, so it SUCKS, but you have to do it. He will survive. He is getting breast milk, which is the name of the game. It's not as convenient and he is having **gasp** (I mean that gasp literally, not mockingly) some sort of artificial thing introduced to his system, but I promise you he will survive and come out on top. Hugs and prayers. Stephanie Roach


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