Oh my beautiful little lady we have had such a rough week. Last night was one of the worst nights that we have ever had. Many tears were shed by both you and mommy. I am so torn my darling baby girl. Mommy doesn't know what to do anymore. I don't know what is right. I feel a lot of pressure coming from everyone around me and I've been putting a lot of pressure on myself. Some people feel that I should stop trying to breast feed and just switch you to all formula. Some people feel I should try to build my supply back up and strictly breast feed you. I am torn. It completely breaks my heart to hear you screaming in pain because you are allergic to my breast milk. We went through 18 diapers yesterday and we haven't done that in several weeks. I need to get your story all caught up on this blog, but yesterday was just such a rough day that I need to get some feelings out.
I am currently waiting on a call back from your pediatrician. I'm hoping that they can get us in today or at least give us some suggestions. I think its time that we take you back to Riley and see an infant allergy specialist. Mommy has cut out all milk protein from her diet, but I think I need to cut out all soy as well. For selfish reasons I didn't want to cut soy out because that limits my food options drastically, but I think that it is time to do so if I want to continue to breast feed. That is my big dilemma now, though. I'm so torn on whether I should continue to breast feed part time or not. It gives you good nutrients, but it hurts your tummy. The formula that we have to supplement you with doesn't give you the best nutrition yet it is helping you gain weight. This has been the most frustrating and heart wrenching situation that mommy has ever had to face baby. I don't know what to feed you. I have such a strong maternal instinct to feed you and take care of you and make sure that you are healthy and I can't do that. With all of these issues my milk supply is way down. I only produce about half of what you want to eat in a day. So I can no longer exclusively breast feed you. It is really hard for mommy to fully explain how I am feeling right now. I feel like no one truly understands what I am going through. I don't personally know anyone else who has a child with a severe milk protein allergy.
Ok I know that I kind of skipped ahead with everything here. Let me go back and explain a little further. When you were two and a half weeks old mommy noticed that you were getting extremely fussy. Fussier than any baby I had ever been around, but I just figured that since I had never had a child of my own, this was just how all babies were. Mommy and daddy felt like we must just not be getting the hang of this whole parenting thing because we never knew how to make you stop crying. Then in week three of your life we began seeing blood in your diapers mixed in with your stools. Daddy is the first one who saw it and he was very freaked out. We went to the doctor and explained what we were seeing. We weighed you and you hadn't even gained a pound in the month since you were born. The pediatrician immediately said that you must be allergic to something. She said the most common food allergy is milk protein, so that is what we decided to cut out of my diet first. The doctor did send us home with a special can of formula that we could supplement you with so you would hopefully start gaining weight, but she encouraged me to change my diet and continue to breast feed. I left that doctors appointment in total shock baby. I couldn't drink milk or eat cheese, butter, sour cream or yogurt. How was I going to make it? I used to eat a lot of dairy products. What I realized though was that I needed to cut out ALL milk protein. That includes a lot more that just the above foods. I started looking on labels of food that we had in the house and there were just a handful of things that I could eat. Almost all processed foods have some sort of milk protein in them. Even most bread, bagels, cereal and "easy foods" as I call them have milk protein. (Look through a few labels if you have time just to see what I mean.) Anything that has the obvious like milk or cheese is out of the question for me to eat, but then if the label says "whey" or "casein" or "lactose" I can't eat that either. Mommy can't eat much right now even though I need to be eating more calories so my body can continue to produce breast milk. It is hard to eat enough calories when you are basically eating rice and veggies all day. It was extremely important at that time for me to continue to try to breast feed even if it was just part time.
Baby you were so skinny. You didn't look or seem healthy. Mommy was so worried and sad to realize that you had been allergic to what I had been feeding you for the first month of your life. It made me feel like such a failure. My body produces milk so that I can feed you, but your little body cannot tolerate it. It was going to take several weeks after mommy's diet change to get the milk protein completely out of my system and then out of your system. So we had a very rough couple of weeks where you did not feel good. You could not get enough food. Some evenings we would sit on the couch for up to 6 hours with you just attached to me trying to feed with your nipple shield. Mommy could not produce enough to satisfy you because you were stooling so much. What went in you seems to immediately come back out. You were never full. Sometimes we would go through over 25 diapers a day because you were having diarrhea so badly. We went through so many packs of diapers and tried every diaper rash creme out there. The stools continued to be mixed with blood. This made mommy sick. If you had blood coming out, that meant that there was an open sore inside your body that could so easily get infected. Mommy worried that if something did get infected, we wouldn't catch it in time. We were already used to seeing blood in your diapers, we wouldn't notice if something worse was going on. This has been so scary for mommy.
The formula that we have to supplement you with is called Nutramigen. It is very expensive. I am glad that you do have a formula option because it has helped you gain weight, but mommy doesn't feel like it is the best nutrition for you. The main ingredient in your formula is corn syrup solids since you can't have milk or soy. Corn syrup solids. So basically I feel like it is vitamin water or Kool-aid or something. It has corn syrup to give you some energy and some vitamins thrown in. The formula does still have a little casein in it as well. Casein is a milk protein, but the protein is completely broken down in this formula. I know that still hurts your tummy, though, because we have experimented with days of giving you strictly formula to see if that made a difference in your diapers, but it did not. That is why I have continued to breast feed part time. I feel like you at least get better nutrition with a mixture of both.
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We have had a lot of ups and downs in this battle. We just went about two weeks without seeing much blood. Maybe only about four diapers total during those two weeks. Mommy felt so hopeful that you were finally feeling better. You were a smiley happy baby and it was so much fun. Ever since last week though the blood has been back in full force and it is not getting better. That is why I finally called the doctor this morning baby. We need to figure something out because this cannot continue. You don't feel good and mommy doesn't feel good. I've barely gotten any smiles out of you these past few days. I am so stressed and I have lost a lot of weight. I have been an emotional wreck this past week and it is affecting everything in my life. Mommy wants to continue to breast feed you baby, but I honestly don't know if that is the right thing to do anymore. I just want what's best for you, but I don't know what that is. I want to include two pictures of your diapers from this morning. I have saved them to take to the doctor if they can get us in today. You can see that one is very loose stool mixed with flecks of blood, and the other one is just a mixture of blood and mucus. I have a lot more that I need to say, but for now I need to be done. I have been emotionally drained since last night.
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Baby please don't be mad at me for trying to do my best these past few months. I'm so sorry that you don't feel good and I feel like its all my fault. Your tummy hurts all the time. Your poor little bottom constantly has terrible diaper rash. I know that you are in pain. I'm trying my best. I thought I was doing what was best for you by giving you a mix of breast milk and formula. I hope one day you can forgive me for putting you through so much pain. Mommy is really beating herself up over all of this. It has been such a lonely struggle for mommy. Please know that mommy loves you so so so much baby. Always and Forever.
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