Tag Archives: salicylate sensitivity

How I’m convincing myself this is okay

Monday I hit sort of a low. I was coming down with a raging illness, and with Leo’s sensitivities, there was nothing I could take beyond a couple of regular strength Tylenol. I had all the hopelessness one normally gets when sick (WILL I EVER BE HEALTHY AGAIN? UNLIKELY) with an inability to have cough drops, tea, ibuprofen, or ANY cold beverage other than water. So pretty much the world was ending, dogs and cats were cohabiting, and Chicken Little was doing laps around my brain. I told Matt I couldn’t do it anymore. Go buy the formula.

The only wrench in my plan was that Leo had his 4-month well-check scheduled for 8:40 the next morning. I didn’t want to send an overtired, hungry, fussy baby in for his first immunization. We agreed we’d start after the appointment. I ate a small bit of a turkey sub — literally the first cold food I had eaten in three months, all the rest was hot, cooked food — with a whole mess of enzymes. I figured I’d give it one last test. Maybe his system was stronger, maybe I could get away with “bad” food every once in a while. Maybe maybe maybe. My last ditch effort to keep this bond with my last sweet baby.

In the past his reactions have been a slight flare in the eczema on his forehead, gas, and the pinpricks of blood in the diaper. I assumed that would be what I’d see if he reacted to what I ate. HA! Ha. This morning, after his first feeding, I noticed a bit of red around his mouth. I thought maybe my hand had been pressed against there, or his had, or something. But it didn’t go down, it got brighter. And it was hot to the touch. It’s still there, nearly four hours since he last nursed. He also threw up most of the feeding.

So I gathered my resolve, and I sterilized the bottles, and I started to come to terms with the fact that this is happening. After three solid years of nursing my daughters (well, with 8 months of pumping for Vio, but it was still all breast milk that she got) I am going to have to give my baby formula. Even though I know that I would tell ANY OTHER WOMAN in my situation that absolutely this is one of those cases where breast milk is no longer best for everyone involved (and may not even be CLOSE to best for the baby) I am having trouble forgiving myself what I perceive to be my own personal failing.

There have been things I’ve been reciting in my head the past few months, trying to prepare myself for this moment. Ways and words to convince myself this IS okay. I don’t know how convincing any of them are, but I’m putting them down here so I can read them over and over again until I believe myself.

First and foremost, the diet I have had to be on to keep him happy and minimally bloody is not sustainable for my health. When this first started was around that point after you get the baby home that maternity pants are NO LONGER AN OPTION. When he was about a month old, I went to Old Navy and bought myself some pants in what I called a “depressingly large size”. I am now comfortably wearing pants that are three sizes smaller than that. That’s a pants size A MONTH. I weigh less now than I ever have in my adult life. (I’d be almost a little bit excited about that if not for the fact that I am REALLY SAD right now, and there are bags upon bags of Halloween candy in our kitchen. Plus Thanksgiving in two weeks, HA HA HA.) That aside, I have had nagging symptoms off and on since starting the low salicylate diet. I finally put it all together, and I think I have some vitamin deficiencies. My skin is dry and awful. I’m getting headaches. And if I’m not getting enough vitamins (read: NONE), Leo isn’t either.

Second, what is best for Leo (if that were somehow breast milk) may not be best for the rest of the family. Matt, saint that he is, has stepped up to take over a lot of the dinnering for the girls. It was too much on me to try to make them a meal AND make me a meal, and try as I might, there just weren’t meals I could make myself on this diet that I could adapt for them. What that boiled down was that they were more often than not eating food from cans/the freezer section/the magical blue box. Now, I am FINE with kids having those foods, but for my family, I try to keep them in moderation. These children were used to fresh vegetables with their dinner every night taking up half of their plates, and I feel as though I have undone YEARS of work by them eating less nutritious food for the last three months. (Not years of the nutrition they got, but years of them eating plate after plate of vegetables without whining for something else.)

Going along with that is the resentment I feel toward the ENTIRE WORLD for eating things I can’t eat. I go in the grocery store and I’m actually angry at the people in there. They can just buy whatever they want! Such freedoms they have and do not appreciate!

I’m really really FAIR is what I’m saying here.

Seriously, though. I should copy and paste the food log I’ve been keeping since August. It is a sad, sad document. Every day basically looks like, “Quaker oatmeal, sugar, salt, white rice, green peas, potatoes, sunflower oil.” Copy and past that 90 times, and you get the basic idea.

Now, as far what is best for Leo, nothing else considered, I don’t think the breast milk was going to work. No matter how carefully I ate, the blood was still coming back. Sometimes I could trace it to something I did (like taking a multivitamin I desperately needed, researched the hell out of, and even rinsed off the sucrose coating to make it as safe as possible) but sometimes it wasn’t easily explained. And that is MADDENING. With the formula, I will know there is one constant input. If he continues to have flare-ups on that? Well, then we may need to get some testing done.

There was a short period of time when I think the stars aligned and we got everything right. He had no blood, and he was STRONGER. You guys, though we know he CAN do the mini-pushup (because he did it that week when everything was awesome) he mostly doesn’t. Sometimes, when he’s flared up, I can tell he’s trying, and he just can’t. I don’t know if it’s related. He’s got some other physical/motor skill things we’re keeping an eye on, and I feel like it would be negligent for me, at this point, not to at least give the formula a try.

Formula feeding comes with so many negatives. The bottles to wash, the loss of that closeness, the bottles to wash, the cost. The GUILT more than anything. The feeling that every single anything that he deals with later in life that his sisters don’t deal with will leave me feeling like it was somehow tied to the formula. But I guess I’m hoping the good will outweigh all the bad. I won’t get a pit in my stomach whenever it’s time to change his diaper. I will be able to cook my family a proper meal at night. I will be able to trade off sleeping through the night.

I am so afraid of what is going to come next when it is time to start solids. I want his body to be as healed as possible before we can even think about it. Starting today means he can get two solid months of easy-to-digest nutrition before his little body has to think of breaking down anything more complex.

This does not undo what I have already done. That’s the hardest bit for me to accept, but it is so important, and my heart knows it is true. I still breastfed three children for a total of 39 months. If he had been my first baby, Roo my last, I would be ending on a positive note, and I would feel content. I can’t beat myself up that they came in this order. This does NOT undo what I have already done.

I am going to pump. I’m going to keep pumping as long as there is something there to pump. I’m going to file it all in the freezer, just in case. Maybe I can donate it? Maybe it doesn’t have to go to waste. (I’m also afraid of dealing with the hormonal drop from weaning. IT IS NOT FUN, and I’m already a ball of anxiety. Let’s deal with that NOT RIGHT NOW.)

I always thought there was no breastfeeding situation I couldn’t rise to the occasion and beat with research and discipline. Maybe I could have beat this if I tried harder, I can’t really ever know that. But I don’t think I’ve got any fight left in me. And he needs me to make this change, even if he isn’t going to like it. This IS what is best.

So. Deep breaths. Enough giving myself a pep talk. He’s starting to wake up now, and it’s time.

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Filed under Little lion man, Motherhood uncensored, Probably too serious

Writing it all down to get it all out

SO! More adventures in the land of Leo. If you follow me on Twitter, you can probably skip most of this. It’s just more of the venting. And maybe slightly more explanation than I give in 140 characters. Times a thousand, since that’s roughly how many tweets I spew out after each and every doctor’s appointment. But! Spoiler?

I am done trying to figure this out with the doctors. Just … I’m done. I mean, unless it gets really really really bad again. (OMG PLEASE DO NOT GET REALLY REALLY REALLY BAD AGAIN.) They are providing none help. Every improvement we’ve seen in Leo has been by MY research and experimentation. I feel like a gigantic wang for saying that, but it’s seriously true.

Well, either that, or he has slowly slowly healed over time and I had nothing to do with it. But I wouldn’t suggest suggesting that to me, because I’m cranky. All I eat is oatmeal and tears. And not even tears anymore, because who knows what’s in those. Probably fluoride.

Anyway.

HAHAHAHA. I just typed up the whole story! Over 1000 words’ worth! Then I tried to read it back, and I just couldn’t. Maybe I just needed to write it all out beginning to end or something? Closure? Who knows. What I DO know is that none of you needed to read that. Well, maybe some other woman who is googling around the whole internet trying to figure out what’s going on with her baby might need to read it, but I already deleted, so I AM SO SORRY CRAZY LADY. If you come over to my house I will tell you the whole story and make you a nice pot of water and peas or something. Maybe we’ll add salt if we’re feeling fancy.

I’m just so ready for this to be over, you guys. This has been the most frustrating and drawn-out experience of my life. I honestly and truly cannot think about other things! Well, when he’s doing badly. When he’s doing WELL, I’m all LA LA LA WE HAVE FINALLY FIXED THE PROBLEM!

You should see my reaction when he next has a bad diaper. Oh, it is not pretty, you guys. It is not pretty at all. And then I do the super healthy thing and take it out on everyone around me.

But we’ve been sans (visible, anyway) blood in the diapers for over three days now. I added back a few vegetables that should be low enough in the salicylates for him to tolerate them. I might start some digestive enzymes soon to see if that helps him at all. I don’t suspect we’ve seen the last of the blood, but I do know what I have to eat to make it go away again. I figure I’ll keep pushing the boundaries of what I can eat and maybe by New Year’s I’ll be able to eat something crazy! Like plain chicken!

I just know I’m done going to doctors and saying, “I’m pretty sure I’ve figured out what is irritating him and I’ve stopped eating it and now he is doing better. Do you think he will outgrow this?” only to have them tell me they’ve never HEARD of what I’m telling them is going on.

Look, I will admit, I don’t think he has a TRUE salicylate sensitivity. I think salicylates irritate the GI tract, and I was ingesting dairy and soy and whatever the actual allergen was that initially caused the allergic colitis, and then we loaded him up on salicylate-laden ranitidine syrup (peppermint flavoring? salicylate PARADE) and it did a bunch of damage. Damage that has slowly but surely begun to heal over the last two months. I think removing those irritating foods from my diet has done him WORLDS of good. I’m not trying to diagnose him with some rare, ridiculous, zebras-not-horses disorder. Mostly I’m telling the doctors this because I think there’s a chance it MIGHT help other women breastfeeding babies with allergic colitis. Hey! Look into food chemicals! They might be continuing the irritation!

Really. That’s ALL.

But instead, they just tell me they’ve never heard of it. Then they forget about us the second we walk out the door. And then another woman walks in with the same problem, and no one can tell her what is wrong, because that thing they’ve never heard of? THEY WOULD HAVE JUST HEARD OF IT IF THEY HAD BEEN LISTENING.

(I’d like to add that our general pediatrician DOES think I’m onto something. Or else he is just familiar with my brand of crazy and knows I won’t shut up about this and is nodding along politely. I don’t really care which it is, I WILL TAKE IT.)

I don’t even know where I’m going with any of this. I guess I needed to get it all out. Put it out there on the internet, however NOT SUCCINCT it may be, just in case. My little ribbon on the internet for salicylate sensitivity awareness.

I do want to thank each and every one of you who has listened to me vent about this, either over Twitter, or IM, or the phone, or email, or in person — you have all held me up through this, and I would have crashed and burned long ago without the encouragement you’ve given me. I KNOW it is all I ever talk about anymore, and I cannot wait for the day this is just some awful, awful memory that I can look back on and through the fog of hindsight can determine I was probably overreacting and overthinking and overdoing and overtrying and overeverything. Ing.

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Filed under Little lion man, Motherhood uncensored, Probably too serious