Friday, September 28, 2012

The "F" Word... What happens when breast really isn't best.

As most of you know, I am one of the biggest breastfeeding advocates you will ever meet. Aedan was breastfed until he self-weaned at 15 months (and I was sad when that happened!) We did LLL, API, a BIRTH nurse-in, etc., etc., etc. I volunteered online for several years as a breastfeeding "coach" for new moms and have seriously considered becoming a lactation consultant. My kids own board book versions of "Breastmilk Makes My Tummy Yummy" and "I am Made From Mamma's Milk." That said, my nursing relationship with Aedan was never easy. I had to pump and use syringes to supplement with expressed milk so that he would gain weight as a newborn. We used shields the entire time due to his oral motor difficulties. I didn't drink juices or eat much fruit for 15 months because it made him sick. I learned to sleep balanced on my side because he wanted to be attached to the breast ALL. NIGHT. LONG. For the first 10 month, he had no other food source (crazy child would never take pureed foods) so I drove myself crazy pumping at work, at home, at conferences, tournaments, and even in the bathroom of The Hobby Center once!  Still, I treasured the experience. It was so amazing to look at this adorable little boy and know that I had built those sweet little cheeks and cuddly rolls. I loved that my gregarious little Munchkin who would happily go to total strangers still wanted Mommy to eat, snuggle, sleep, and comfort.

Here is my sweet chubby cubby at 10 months, still 100% Mommy Milk:

With Logan, things actually started out much easier. He was far more interested in eating directly after birth than Aedan was and gained weight easily and quickly. We have used shields, but I did not feel trapped into them like I did with Aedan. Instead, it was a decision based on what was more comfortable for me and easier for him switching back and forth between bottles and breast once I went back to work. Since I didn't return to work until Logan was 4 months old, he started bottles much later than his big brother. Just like Aedan, though, he took to them quickly and easily and never complained about transitioning back and forth. I spent the summer building up a freezer full of expressed milk so that I wouldn't have to stress over running low when I went back to work.... And then through it all out when we realized after my total elimination diet that Logan had a dairy intolerance back in July.  I was still determined to have a successful nursing relationship. I stayed off butter, cheese, milk, ice cream, frosting, whipped cream, and oh so many other things for several months. When his symptoms began to worsen again, I read labels, avoided bread, baked goods, crackers, and even tortillas. When that didn't help, I re-eliminated soy which did no good at all... And that brought us to yesterday's visit to the GI clinic at Texas Children's.

Logan's official diagnosis is a Milk Protein Intolerance. Based on the fact that eliminating dairy from my diet did not eliminate his symptoms, it is probable that he is either reacting to the casein or whey inherent in all breastmilk (regardless of my diet) and/or that he actually has Multiple Food Protein Intolerance and is reacting to some unknown food other than milk or soy. He was placed immediately on 100% Neocate, an amino-acid based prescription formula. I nursed him one last time sitting in the car in the parking lot. We were warned that going straight from breastmilk to an amino-acid based formula is hard for most babies as the taste is so radically different and even told to add a packet of splenda to his bottles temporarily as he transitions. I am so tremendously happy and grateful to report that Logan took his first bottle of Neocate last night with no hesitation whatsoever:
Logan gives me a weird look when I feed him a bottle... I don't blame him. The sensation is very strange for me, too. I had never given a bottle to one of my kids before last night. But he doesn't hesitate to take the bottle, cry, pull at my chest, or any of the other things I was so desperately worried about. I'm not sure I would be able to take it if he did. Reports from my aunts today are that Logan is happy and having a great day. They say he seems to be sleeping more peacefully than usual and has been playful when awake. The plan is for my to pump this week while we make sure that the Neocate is working. Assuming it does, I will gradually stop pumping as well. The good news is that most kids outgrow a milk protein intolerance by age 1 and even those that don't usually by age 3. Just like my little monkey's foot, it is something that will be difficult as a young child but he will probably never really even remember.

However, I honestly cannot put into words how difficult this is for me. I cannot help but think of how many times I have listened to people talk about why breastfeeding didn't work for them, all the while doubting in my head how hard they had really tried. I fully admit to being a judge-y nursing mom who looked down on those who chose not to breastfeed. I honestly thought that I had been through almost all of the difficulties with Aedan and survived with a happy nursing relationship intact.  "Formula" has been a dirty word in our house for over five years. It was suggested as a supplement for both my barely-term jaundiced babies and both times I fought it off. I had never made a bottle with formula until last night and had to look up what kind of water I was supposed to use, what temperature it was supposed to be, and how I should store it. I HATED having to hold my half-asleep, crying child in one hand last night as I added water to a bottle with the other. I realized this morning I have no earthly idea what a normal formula-fed diaper looks like.

I am trying so hard to look for the positives...With any luck we may all get to sleep a bit more at night. There will be no more hiding in bathrooms to pump or stressing about how many ounces of milk I have to leave with other caretakers. I ate butter and cheese on my baked potato last night for the first time since June and ate pizza and a chocolate chip cookie for lunch today. I didn't have to panic when I realized that I forgot my cooler today for the milk I pump while at work - it can just be thrown out. Above all,  we will (hopefully) finally have a happy, healthy baby. Obviously, that is the only thing that really matters in the end. Ultimately, I know we are making the right choice for my sweet little Monkey. No breastmilk benefit is worth him being in near-constant pain. Still, I can't help the part of me that feels like a failure. I can't help but want to attach a giant sign to his bottles that says "My Mommy desperately wants to breastfeed me but I am allergic!" The idea of feeding my child a bottle in public upsets and embarrasses me. More than anything, I can't help but tear up when I think about not nursing my baby boy anymore and enjoying that wonderful bond.

Thank you to all of you who have been following Monkey's journey and offering us your love, support, and assistance. We definitely need it and appreciate it always. With any luck, we will have nothing but positive happy news to report from here on out. In the meantime, I will continue my quiet grieving process and work towards thinking of Formula not as a dirty word but as the tool towards healing my precious baby boy.

Thursday, September 27, 2012

Logan's Medical History

I typed this out this morning to give to Logan's new GI specialist so that I don't forget anything. Since I know some of you have not been in the loop for everything, I thought I would post it here as well. It was written for medical purposes though, so be forewarned that some of it is probably TMI!!!  I will update everyone this afternoon after his appointment. Thanks as always for all your help and support.



  • Logan has been 100% breastfed since birth. He takes four 4 oz. bottles of expressed milk each weekday while I work.

  • Logan is not in daycare or any other group child-care situations.

  • Logan has had all immunizations as scheduled.

  • Between birth and 2 months, Logan had 6 casts and a brace to correct his right club foot.  He also had a right Achilles tenotomy at 6 weeks. He is still in the brace 14-16 hours a day under the care of Dr. Epps at Texas Children’s orthopedic clinic.

  • Logan was re-hospitalized for jaundice treatment (bili-blanket and lights) at 3 days. He was released after 24 hours.

  • Logan has been high-needs since birth, but because of all the issues with his foot, difficulty sleeping, etc. it took us a long time to realize that there was definitely something else going on. (tried “No Cry Sleep Solution,” “Happiest Baby…” etc. I eliminated caffeine.)

  • Logan’s BMs went from the normal yellow seedy breastmilk BM to a greener version and then to a mucousy green by about 2 months.

  • Beginning at about a month (and lasting for 4-6 weeks), Logan had a recurring rash on his cheeks, stomach, and chest that we thought was a heat rash and diminished each time with hydrocortisone cream. I remember wondering if it might be an allergy and dismissing the thought as too uncommon.

  • At about 2.5 months, once things settled down with his foot and the brace (and as he began to stay awake longer periods) we began to realize that Logan was only happy for small, isolated moments during the day, usually totaling only about an hour out of every 24 hours. He was also forcefully spitting up large amounts at an increasing rate.

  • At 2.5 months, I decided to try an elimination diet to see if my earlier inclination about allergies might have been correct. I was on turkey, rice, potatoes, and pears for 2 weeks. Within the first 4-5 days, Logan’s mood changed drastically for the better as did his BMs. He stopped spitting up entirely. He also began to sleep for at least one 4-5 hour stretch at night.

  • Logan’s first round of testing, at about 3 months, a childhood allergy panel, came back negative for everything except a mild reaction to peanuts.


  • As soon as I re-introduced dairy, he went back to screaming and green, mucousy diapers after about 24-36 hours.  I eliminated dairy again. I tried re-introducing gluten and then corn, soy, fruits, etc. Logan’s mood stayed much better most days and the spit-up stopped but his BMs continued to test positive for blood and gradually his stretch of sleep at night has shortened again.

  • For the past 6-8 weeks, Logan has had a terrible diaper rash. We have tried all the over-the-counter remedies, Lotrimin on recommendation from the pediatrician who thought it might be yeast, and a prescription for

  • In the past 3 weeks or so, Logan has been having more and more rough days and nights when he seems unable to get comfortable. He seems to be having very painful gas that is also foul smelling. He has also developed a pattern in which he appears constipated for 1-2 days and then has a huge, often visibly blood tinged (though only specks), very mucousy BM.

  • Logan had more testing done last Friday based on our pediatrician’s list of foods I ate regularly. Results are not back yet.

  • A week ago, after reading about Milk Soy Protein Intolerance, I tried re-eliminating soy from my diet. Logan’s symptoms have peaked in the last week. Several nights, he has only been able to sleep while being held and rocked or walked in our arms. He has also been arching his back and crying while nursing and afterwards. My only theory is that I have been eating more corn since eliminating soy.