Wednesday, December 30, 2009

New Game Plan

This is a rather lengthy post and it's content is centered on breastfeeding
(for the most part).
Read at your own risk!

It's been a very interesting 24 hours here in our household. Hubs and I have been thinking VERY hard about this whole milk protein allergy thing with Chase. I've heard from several HLHS heart moms who say their babies had some blood in their stools as well, but that it wasn't a milk allergy and it cleared up on its own. So hubs and I got to thinking: Is it fair to put Chase on a nasty formula for 2 weeks on the off-chance that he might be allergic to milk protein?? Is there a better way to test this allergy theory? We decided it might make sense for me to:
  1. Immediately eliminate all milk protein products from my diet, which will take a good 10-14 days to completely leave my system;
  2. Continue to provide Chase with my breastmilk, knowing that it will continue to have some form of milk protein in it for the next 2 weeks, although the amount will be decreasing each day;
  3. After 2 weeks, once my breastmilk is milk-protein-free, we continue to give him my milk for another 2 weeks, then test his stool for blood again. If it comes back positive, then we know it's not a milk allergy and we didn't have to make him suffer on nasty formula (although we would potentially need a referral to a GI to check for other possible causes). If it's negative, then we know it was a milk allergy and I would need to continue on my milk-free diet throughout the entire time Chase has my breastmilk. The bonus here is that IF (God willing) we're given the go-ahead to start nursing on Tuesday after the swallow study, I can go ahead and start breastfeeding my precious baby immediately! Woot!
So here's a summary of what we've been though the past 24 hours:
  • Chase had a rough night with the formula last night. He was barely taking 3 ounces of it, compared to the 6-7 ounces he had been taking of breastmilk. In addition, he's been puking a LOT of the stuff. His 3AM feeding resulted in a loss of at least 2 of the 3 ounces he took. We've NEVER had an issue with him spitting up breastmilk.
  • Last night I emailed one of the cardiologists in the PCICU at MUSC to ask if it's relatively common to see some blood in stools for HLHS babies.
  • This morning I called his pediatrician and left a message to find out what his "back up plan" might be since the formula isn't going over very well.
  • This morning I called his cardiologist and left a message to determine if it's somewhat "normal" for HLHS babies to have blood in their stool, per several of the comments I've received from other heart moms who say this was the case with their babies.
  • This morning I called MUSC and left a message for the speech therapist to inquire about the thickener we've been using to thicken my breastmilk and whether or not they've heard of an issue with blood in the stool for other babies using the thickener product.
  • This morning I called my mom at work (she's a NICU nurse -- woot!) and left a message for her to ask the Lactation Consultants at her hospital for some kind of a handout or brochure regarding how to eliminate milk protein from a nursing mother's diet.
Whew! So it was a busy morning! And luckily, I received all of the information I needed to discuss this further with hubs. Here's what I found out:
  • Per the PCICU cardiologist at MUSC, it is not uncommon to see blood in the stool during the stay in the ICU and even once the baby is home. He suggested it could be due to things such as their immature body undergoing major stresses with surgery and getting used to a new physiology as well as being on a blood thinner like aspirin. He said continuing on breastmilk and giving the situation time should take care of it. Woot!
  • Chase's pediatrician didn't have any issues with our chosen plan of action (no formula, just breastfeeding with me eliminating milk protein from my diet). Woot!
  • His cardiologist wasn't in the office today but another one from his practice called me back. He's my new best friend! He said he's not a fan of any doctor telling a mom to stop breastfeeding. He didn't think it was overly usual for an HLHS baby to have blood in their stool, but he completely agreed with our plan since it involved keeping Chase on breastmilk. Woot!
  • The speech therapist said she wasn't aware of any issues with the thickener causing blood in stools, so I could cross that one off my list. But the good news is that she told me that there's definitely a good chance he'll be ready to take straight breastmilk after she does his swallow study on Tuesday. Woot!
  • My mom came through for me and brought me a sheet of information on the "Do's" and "Don'ts" of a milk-protein-free diet. Woot!
So earlier today we went ahead and started Chase back on my breastmilk, although it still has milk proteins in it. He's taken it as wonderfully as we expected and hasn't been spitting up at all! Way to go, Rock Star! Also, I started my first day of this new diet and overall it hasn't been too bad! I've made some minor adjustments, but nothing too over the top just yet. Although I have been amazed at how many products have some form of milk in them that you honestly wouldn't expect! Sheesh.

If any of my readers have any experience with milk allergies and breastfeeding on a milk-protein-free diet, I welcome your comments/thoughts/experiences, etc.!


  1. Hi There!

    Just wanted to let you know that Ian was diagnosed with a cow's milk protein allergy at almost 3 months. Let me tell you, it was tough because they told me that all the milk I pumped to return to work a MERE 3 DAYS AFTER I LEARNED OF HIS ALLERGY, would not be safe for him to consume unless he outgrew the allergy before then. And he did not and I had to throw it all out :( Anyway, not to make it sound like you have it easy, but I was told most babies who are allergic to milk are also allergic to soy. And, to top that off, they said to also eliminate all the other "biggie" allergens. So about 1 week before Thanksgiving last year I began restricting milk, eggs, nuts, and soy. Let me tell you, SOY IS IN EVERYTHING.

    I pumped and pumpled while my son tried formula since they wanted to be sure he had the allergy. We also did a Meckle scan to ensure there wasn't another problem, which thankfully came out normal. The only test we did not do was a sigmoidoscopy.

    Long story short, try to salvage your nursing experience. Formula will change and could, as it did with us, the nursing relationship. You will do anything to make sure your child is safe and I thought moving to formula to ensure this was an allergy was the way to go.

    At 1 year, Ian was starting yogurt and cheese and at 13 months, he started milk. He loves milk and is not allergic to milk and soy! Woo!

    Trust your instincts. As a mother who loved nursing, if it's your dream to nurse, then stick to your guns, restrict the dairy and go for it. This is but a blip in your son's health, but extremely common!

    Good luck. Do not let this get you down.

  2. I am late getting in on this conversation, but we are convinced that the polycose we were being told to use to fortify my milk was the problem. After our daughter’s Glenn, she went on straight Neocate (due to unresolved blood in the stool), and once we started pumping up the calories to 30 cals/ounce, all of her symptoms flared up again. We then decided to try straight breastmilk, no fortification, and she has been nursing ever since. I still follow a strict dairy/soy free diet, but with great results. It is worth a try—we remain convinced that the large amounts of glucose were causing the GI upset that was resulting in blood. We were also told that many babies cannot handle the polycose (for above reasons), but we did not learn this until after we had dealt with hellish feeding problems for 4.5 months.