Tuesday, 23 April 2013

Triumphant Tuesday: Breastfeeding a Baby with Multiple Allergies

Human milk is the most natural and physiologic substance that a baby can ingest. If a baby shows allergic sensitivities related to breastfeeding, it is usually a foreign protein that has piggybacked into mother's milk, and not the milk itself.

Yet many mothers (and more worryingly, health professionals) believe that if a baby has an allergy the only remedy is to switch to hypoallergenic formula. This is grossly untrue. In such circumstances, mothers do not need to reach for the bottle - they just need to take a break from eating or drinking things containing the offending protein for a while. Allergy is certainly no reason to wean - it simply requires an investment of effort from the mother. And every baby is worth that, right?

This mother thinks so. When her baby became seriously ill it was discovered that he had multiple allergies, requiring a complete overhaul of his mom's diet! Could she deal with this whilst also battling recurring mastitis, aggressive oversupply, and a return to employment?

“I will say that my biggest regret from my whole birth experience was allowing visitors so soon. I had originally planned on waiting at least until we got to the recovery room to see visitors, but my fiance's parents came strolling in about an hour after I gave birth when I wasn't even dressed yet. They were so excited to see the baby that they didn't even notice me, but my fiance eventually saw how uncomfortable I was and shooed them away. They visited a few more times during our short stay at the hospital and my parents came to see us as well. This was really hard on me, as I was trying desperately to get my baby to nurse and people kept coming to visit, wanting to hold the baby.

My son's name is Theodore aka Teddy. We call him by the nickname 'Bear'. My little Bear and I had trouble breastfeeding from the start. He wouldn't latch in the hospital despite my receiving help from three different nurses and two lactation consultants.

Nipple Shield

After 24 hours he still hadn't fed and when they came in to weigh him I broke down and cried. My inlaws of course, were around to witness my distress, which made me feel even more uncomfortable. The lactation consultant asked if I wanted to try a nipple shield, but warned me that they often lead to low supply and could be difficult to wean babies off of. I was desperate at that point so I agreed to try one.

Although he did much better with the shield, I had a love/hate relationship with it. I loved it because it allowed me to breastfeed my son, but I hated what a pain in the ass that thing was. It constantly leaked milk out of it (mostly thanks to my oversupply) and I felt like all I did all day was wash them. Eventually I bought about ten and just kept them in a bowl next to me so that I could easily grab them during the night.

The lactation consultant was still worried that he wasn't getting enough, so during each feeding we used a syringe/tube system to give him a little extra expressed breast milk while he was latched on. They were also worried about the shield leading to supply issues, so they had me pumping after every feeding round the clock.

Bear nursed every 2 hours for about 45 minutes at a time, so pumping alongside was exhausting. I hated pumping (and still do). I dreaded every night because I knew I wasn't going to be able to get more than 30 minutes of sleep at a time and even that was pushing it. I also felt very trapped. It's one thing to be nursing a newborn all day, but to then spend the tiny amount of free time that you do have attached to a pump can be incredibly frustrating.

After I left the hospital the lactation consultant continued to check in with me. I kept saying that I thought I was making plenty of milk despite using the shield, but she assured me that I needed to keep pumping after nursing sessions if I wanted to sustain my supply.

Recurring Mastitis

When Bear was 4 days old I started to feel like I was coming down with the flu. I had a fever, chills, and was completely miserable. My mom, who had been staying with us, asked me if I had any red marks on my boobs. I went to the bathroom to check and, sure enough, both breasts were streaked with red. I had mastitis on both sides. After that I went down to only pumping twice a day after feedings. I was also determined to wean Bear off using the nipple shield.

Weaning off the shield was no walk in the park. I tried every day for 8 weeks with no luck. I was beginning to fear we would never get rid of that stupid thing. I think part of it was because my breasts were so big at the time and Bear just couldn't stay latched without it. He would always end up frustrated and start crying, which then made me cry too.

Finally on Thanksgiving I decided to try nursing without the shield before Bear got too hungry. It took a few tries, but I was finally able to get him to latch and he went a whole feeding without the shield! That was kind if the turning point for us. I knew he could do it without the shield, so I was determined to continue without it. From that point on we never looked back. My breasts became slightly more manageable, but I was already dealing with a huge oversupply. Every time I nursed Bear he would pull of screaming the second I had a letdown. I ended up having to unlatch him during every let down, catch my milk in a towel, and re-latch him. I also turned to block feeding.

Having an oversupply was so insanely frustrating for me. When Bear was a couple months old I kept reading about women who were saying that they were finally enjoying and even loving breastfeeding, which was not even close to what I was experiencing. I felt horrible that something that was so soothing for most babies was so frustrating and clearly unenjoyable for him.

That went on for 4 months and during that time I got mastitis three more times. Luckily by that point I could tell fairly easily when it was coming on and I would put in a call to my doctor for a refill on antibiotics.

At this point I just knew that pumping so often wasn't necessary (and that it was actually doing more harm than good), so I cut out all night time pumping and gradually reduced my sessions to twice a day.

Sick Baby

At around 2 months Bear was becoming increasingly fussy and gassy. He also had very loose, dark green, mucousy stools, eczema, and seemed to be permanently congested and wheezy. After speaking with the pediatrician about milk intolerances and all of its symptoms I cut all dairy out of my diet. Bear became so much better within just a day. About a month later though he still seemed to be having tummy issues. I did some research and found that half of all babies who are sensitive to dairy are also sensitive to soy. I cut soy out and once again, Bear improved tremendously. This was another big adjustment for me. If you've ever read a label you know that soy and soy derivatives are in everything!

When Bear was 4 months old, we were still struggling. He was a very fussy baby and never slept well. Getting 2 straight hours of sleep at night was a miracle. We would walk/rock/bounce him back to sleep and the second we laid him down he would wake up again. He was also still having a hard time nursing without pulling off and crying. I explained this to his doctor at one of his appointments and he said it sounded like it might be reflux. He prescribed us Zantac, which made absolutely no difference. The next medicine we were told to try was Prevacid. It seemed to help slightly, but after about a month on it I stopped giving it to him and saw no change, so we discarded it.

During this time, I was a mess. Despite huge efforts and help on my fiance's part, I felt very exhausted, alone, and anxious. Looking back I think I definitely suffered from a little postpartum anxiety. Every evening I was overcome with intense feelings of anxiety about the night ahead of me. At the time I didn't know how to put my emotions into words, so I never told anyone.

Allergy Tests

At 6 months Bear was still having eczema flair-ups and tummy troubles now and then, so my pediatrician wanted him to be allergy tested since he was already having issues with dairy and soy that I ate. During our appointment with the allergist I felt like we were completely undermined. The doctor performed a skin prick test on him and determined he was only allergic to egg. He told us that I should just reintroduce dairy and soy and that his eczema wasn't bad enough to be a big deal. I left feeling very unsure. My gut instinct was that the doctor was wrong, so I continued to experiment with different foods and documented how they affected Bear.

After a while I think a lot of my friends and family started to think I was being overly cautious and exaggerating his symptoms. There was even a time when I began to second guess myself and thought that it might just be all in my head. By this point I pretty much survived on almond milk, pasta, and different nuts/trail mixes.

When Bear turned 9 months I gave him a tiny bit of hummus to taste. He ate it and immediately became red and blotchy and began coughing and gagging. I called my pediatrician who referred us to a different allergist. During his appointment they did another skin prick test followed by a blood test. The results came back to show that Bear was highly allergic to milk, egg, wheat, nuts, and sesame. I was upset but also felt relieved - we finally had some answers to all of the issues we were experiencing!

However having to cut the remaining foods was pretty overwhelming. I had to stop eating so many of the things that were main staples of my diet. I switched to coconut milk and hemp milk and the rest of my diet is now mostly meat/fish, fruit, veggies, and rice, corn, and potato-based foods. When I cook I used lots of olive and coconut oil.

His first allergy bracelet!
Cooking can be somewhat of a challenge. The hardest part is just coming up with a variety of tasty dishes that will keep me full. Now that I'm back at work full-time I have to admit that lots of nights are just canned soup or a salad. I'm trying to get better about it because I want to continue breastfeeding for a while, so I need the calories if I'm going to keep my supply up. I have started drinking a rice-based protein drink every morning, which helps keep me pretty full.

If you had told me a year ago that I would be eating a dairy/wheat/egg/nut/sesame/soy-free diet I never would have believed you. I'm a total food person. I used to live for dining out, food festivals, and cheese tasting. My favorite foods ranged from home-made macaroni and cheese to panna cotta. Dairy was always my weakness- goat cheese, fresh mozzarella - I loved it all. Cutting it out of my diet was definitely an adjustment, but seeing the almost immediate change it made in Bear was so worth it.

Donating Milk

I will say that the one good thing about having an oversupply was that I always had a freezer full of milk. Unfortunately after finding out about Bear's egg allergy all of that milk became useless to me. So not only did I spend all of those months dealing with an oversupply - now I didn't even have anything to show for it and all that time I spent pumping! I had no clue what to do with the milk and it felt so wrong to just dump it all out.

Then I came across a donation site on Facebook and was shocked to see how many women were actually searching for breast milk for their little ones. Some just wanted it for the nutritional factor, while others needed it for medical reasons. I ended up finding a mom in my area who was searching for breast milk for her baby girl that was dairy-free. Being able to supply her with something that her baby needed and seeing how grateful she was was an incredible feeling. While dealing with an oversupply wasn't easy, I was able to see that it can be just as frustrating (if not more) to be on the other end of it and not have enough milk for your child. Donating milk helped me deal with my oversupply emotionally, though it was still very frustrating most of the time.

I considered quitting breastfeeding and using a hypoallergenic formula many times, but could never bring myself to do it. A lot of people are surprised to hear that I continued breastfeeding after finding out about Bear's allergies, but to me it actually became more important. Studies have shown that breastfeeding can actually help kids with allergies in the long run and I want to give him every shot I can at growing out of them.

"Never quit on a bad day" was a saying that went through my head often. After surviving reflux, an oversupply, and mastitis multiple times I was still determined to get to that point everyone talks about when breastfeeding becomes easy and enjoyable.

Bear is now 11 months old and I am breastfeeding him on a dairy, egg, wheat, nut, and sesame-free diet. It's not easy, but I have become fairly used to it. I had originally planned on quitting at 1 year, but since he would need either whole milk or formula until he turns 2, I have decided to keep breastfeeding as long as we are both enjoying it and my supply cooperates despite my being back at work full-time.

I'm pumping a lot less these days, but I do have a small stash saved up that I plan to donate again in the next couple of weeks.

Everyone Should Try Breastfeeding

I think everyone (aside from those who can't for medical reasons) should give breastfeeding a try. With all of the info out there about all of the benefits I just don't see why you wouldn't. I'm not going to judge someone who tries it and decides that it's not for them, but to flat out refuse to even give it a shot just seems silly. Perhaps it's my science background, but I've always felt like my body was equipped to feed my baby for a reason.

If any other breastfeeding moms out there are struggling, I just want to say that I understand how you feel and you are amazing. Breastfeeding may be "natural", but for me it was anything but easy. I'm so happy I was able to stick with it and I hope you are able to do the same. It's such a selfless thing to do and I don't think there is enough support out there for us. I still believe that every mom should be sent home from the hospital with an assistant and personal cheerleader. And a trophy. Of course a trophy."

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Email me with your breastfeeding story.


The Reading Woman said...

Beautiful mom and handsome babe. What a dedicated mama you are! Thanks for sharing your story...it is an inspiration.

Athena said...

I love that she just kept going and trying what she knew in her heart to be the best thing for her son. Plus, all these changes would have had to be made eventually if he doesn't outgrow his allergies! So starting the process of figuring out meals that are in line with his needs just gave his mama a headstart. Way to go!

taniamc said...

I almost could have written this word for word... from the latch issues to the nipple shield, allergies and reflux; it's been four months and we are right in the thick of it. thank you for sharing, I wish I had someone like you to talk to during all this.

Caropuce said...

Wow! What a story! I didn't want to breastfeed. I decided to try it out 11 months ago. Now I don't want to quit.

Like you I had too much milch and one mastitis, but I only rarely pumped, only when my breasts were too full. Since the beginning it was easy and natural to breast feed for both of us and I love the relation we have created toward it.

In contrary to you, I don't think everyone should try it, it was my decision but every one knows best how they want to be a mum and a woman. It is a very personal decision, where so many factors are playing a role.

However, I completely support the idea of the trophy for breast feeding, and the personal consultant. I live in Germany and it is more or less what we have. The mid-wife can come to your home to help about breastfeeding issue anytime after birth for the first year. It was so helpful in the beginning.

Good luck with your breast feeding experience. Thanks for sharing it. It is great to be able to talk about it.

jenmunson said...

I had the exact same problems. My daughter had dark green, mucous and blood filled stools. She would also scream uncontrollably for hours and hours on end. I was on a dairy, soy, wheat, beef, egg, nut and shellfish free diet. Until I discovered something about all those foods... All those foods are genetically modified, so the proteins in them have physically been changed. After almost a year I discovered that as long as I eat 100% organic, GMO free products she does not get a reaction. Our breastmilk is designed to protect our little ones, but GMOs are toxins added to foods and we just can't get rid of the toxins so they come out as allergies.

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