Allergies

**Warning readers: I have included two pictures in this blog of messy diapers so I can properly explain what is going on with my baby. Please don't judge me for this. I am just trying to document everything the best that I can. You have been warned.**

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.

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.

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.

Riley Children's Hospital

Hello sweet baby. Let's continue our journey. Remember how mommy said that Riley Children's Hospital is a wonderful yet terrible place? I will explain what I mean by this. The doctors and nurses at Riley are amazing. You got the best care there that you possibly could have, but the only reason that we had to be there is because something was terribly wrong with you. All the other babies there have things that are terribly wrong with them as well. It was heartbreaking.

Again, not getting an epidural was the best decision for me. If I had had an epidural, the doctor would not have discharged me from the hospital so early. I left Hendricks Regional around noon and came to see you at Riley. I got to see you and touch you and talk to you. I could not hold you yet because you were hooked up to too many machines. It was comforting to know that you were alright. The doctor originally said that our best case scenario would be to have you at Riley for about 6 days. The thought of that was exhausting to me. I did not know what to expect from our experience at Riley because I was not anticipating having to be there. I know it is very naive of me, but I honestly did not even consider your birth going any way other than what I had in my birth plan for you.

You were in the NICU at Riley. It was a long room with about 10 other babies and their families, visitors, and nurses. We did not have any privacy and parents are not allowed to spend the night in the NICU to be with their babies. Your main nurse, Arianna, wanted me to start pumping right away so you could get some nutrients. You still had your breathing tube and a feeding tube down your throat so we could not try to breastfeed yet. I had to go to a nursing room to pump for the first time. This was very overwhelming for mommy. My plan had always been to nurse you as soon as you were birthed, but that did not happen. Finally around 7pm I was able to hold you for the first time because you were starting to breathe on your own and were able to be off the ventilator. We tried breastfeeding right away, but your throat was so sore from the tubes that it did not go well. You never properly latched on and mommy was very stressed. We didn't have much privacy. The nurses put up several screens around your station so that you and mommy were semi hidden. While the screens kept us out of sight, they could not drown out the noise in that NICU room. Doctors were making their diagnosis, nurses were responding to alarms, other babies were getting surgeries done right at their stations and families were getting bad news. Mommy hated to hear the cries of other mommies and daddies. The baby right next to your station was very sick. He needed new kidneys, but could not have the operation until he was at least 20 pounds. He was given a 20% chance to live. His parents didn't understand. There were a few babies that never had any visitors the entire time that we were there. They didn't have anyone to come hold their hands and whisper "I love you" to them. The nurses gave them attention, but couldn't be with them all the time. It made me so sad. Other babies had visitors coming and going. You were one of those babies. You have a lot of people that love you. Only two visitors were allowed to be at your station at one time, though, so I did not get to see many people interact with you for the first time because I could not be in the room. Everything was so stressful. Mommy felt like she had gotten run over by a train. Mommy could not relax and you never did latch on properly to nurse. You still never have.

Most of the rest of this blog will be about our struggles to breastfeed and your allergy issues. For now though, I will continue with your hospital stay. You were officially diagnosed with a pneumothorax. (http://en.wikipedia.org/wiki/Pneumothorax) That is why you could not breathe. You also had a small hole in your heart and a slight heart murmur. You had several chest x-rays taken and an ultrasound done of some of your organs. This was very scary for everyone who loves you, but you fought through everything very well. You made great progress that first day. Since mommy and daddy couldn't stay the night with you, we had to go home. We tried to get into a Ronald McDonald House room, but did not get on the list in time for the first night. We got home around 9:30pm and mommy was so tired. I got in bed immediately. Around 10:30pm I was woken up by a phone call from the hospital. You were hungry. I could hear you crying in the background. The nurse asked if there was any way that I could make it back to the hospital to feed you. Mommy couldn't drive herself and daddy and grandma Julie were fast asleep. I tried to wake both of them up, but didn't have any luck. I didn't really get any sleep after that phone call. I just wanted to be where you were. I was showered and had my bag and a bag for you packed by 3am. As soon as grandma Julie woke up, we left to come see you. Again I tried to nurse you. It did not go well. Your nurse suggested that I try a nipple shield and that did seem to help. You were doing so much better with your breathing, but we wouldn't be allowed to go home if you weren't eating. Mommy was very focused on nursing you and pumping as much as I could so we could at least feed you through your feeding tube. Arianna put mommy and daddy on the list for a Ronald McDonald House room for the second night and we were fortunate enough to be chosen to stay in one. Mommy felt so lucky! I was able to come up and nurse you in the middle of the night, but again, things just weren't going well with breastfeeding. You were not getting the hang of it. By the third day of trying to nurse, mommy felt very discouraged. I just knew that we weren't going to take you home any time soon. The doctor came around for his morning meeting with the nurses, and asked how you were doing. He asked about your feeding. I sat there exhausted just knowing that I was about to hear bad news. The doctor said "I think it would be in the best interest of everyone if breastfeeding was continued in the comfort of a home." Mommy instantly started sobbing. I think that it took everyone by surprise. I looked up through my tears and everyone was just staring at me. The nurse asked if that was what I wanted and all I could do was shake my head yes. I knew that I could better take care of you if we weren't in such a stressful environment. So on the third day, we were able to go home. We still continued to use the nipple shield to nurse, but you were at least eating. I did not know it at the time, but our breastfeeding battle was just beginning. I will tell you more about that next time baby, but for now don't you ever forget that mommy loves you always and forever.

The Beginning

Hello my darling baby girl. I want you to know that mommy loves you always and forever, but things have not started off easy for us. First, let me start from the beginning. Mommy and daddy met in 6th grade choir class. Mommy thought daddy was the most annoying boy in the entire world. Fast forward to freshman year of college for mommy and daddy when we began to date for the second time. Now its seven years later, and we have you.

We were so excited to meet you. We had a plan. September 3, 2012 we had scheduled an induction. We checked into the hospital at 4pm and I got my first dose of cervix softener at 5pm. The plan was to get a dose every 4 hours until about 6am. At that time the doctor was going to come in and break my water and start me on pitocin. We were expecting to meet you sometime that next afternoon. Mommy and daddy packed a DVD player with some of our favorite DVD's. We joked that the first movie that you would watch would be Superbad because mommy loves that movie and we knew I would need a good laugh after birthing you. The hospital that we were at offered free massages to new mothers. Believe me I was planning on taking advantage of that! Plus, I was going to have cheesecake after every meal! We were going to have a lot of visitors coming to see us and our brand new beautiful baby. That was our plan. We quickly learned that things don't always go as planned.

Mommy only got one dose of cervix softener. By 9pm I was at 4cm and having very regular contractions. Things were getting painful, but I had a strong feeling throughout my entire pregnancy that I did not want an epidural. Not getting an epidural was one of the best decisions mommy has ever made. I lost track of time, but labor progressed quickly. The nurse came in to check me and I was at 7cm. Then I had three terrible contractions back to back. I was clutching the side of the bed because I was out of my mind in pain. I told daddy and grandma Julie that I needed to push. They ran to get the nurse and I was at 10cm. Everything my body had worked for the past 10 months had led to this. I was so ready to meet you, and 30 minutes of pushing later you were here. It was 1:58am on September 4, 2012 when you made your arrival into this world.The doctor put you on my chest and I looked into your eyes. I didn't even have time to reach out and touch you. You gave us a few good cries, but then the nurses whisked you away to a table across the room. The nurses were listening to your chest and they started rushing around. You got quiet. The room got quiet. I didn't understand what was going on, but I knew something wasn't right. You turned blue and weren't breathing. The nurse began to manually pump your breaths. I felt so helpless looking at you from across the room. My body felt like it was going into shock. I was so cold that I had to ask the nurse to cover me with multiple blankets. My mind was racing. It went into survival mode. I told myself "don't get too close to this baby because she might not make it." I have struggled to get over this mental block ever since you were born. It is not that I don't love you baby, its just that my mind couldn't handle losing you.

When they took you out of the room, I tried to get some answers. Your grandma Julie is a very smart lady. I knew that she understood some of what the doctors and nurses had said. I asked her if there was a chance that we could lose you and she replied that there was always a chance. I could tell by the look on her face that she was very worried and that made me worried. She left the room to call grandpa Rick and tell him that he needed to drive down to Indy right away. I knew then that things were bad. Honestly, though, I just felt numb. I didn't have much emotion. I felt like everyone was walking on egg shells around me just waiting for me to break. Everyone was whispering and scattering around. The pediatrician on call had to be called in to evaluate the situation. No one knew for sure why you weren't breathing and the hospital where you were born did not have the resources to take care of you. The pediatrician came into our room and told us that they needed to transfer you to Riley. Riley is an amazing yet extremely sad place to be baby, but we are so fortunate that we live close to such a great hospital. The Riley ambulance transport team was called to come and get you. Once they arrived, they got you all packed up and ready to go on your first car ride in an ambulance. They had to put a breathing tube down your throat so they could start you on a breathing ventilator. You put up such a fight that they had to sedate you to get the tube in! You have been such a fighter from day one. Mommy and daddy got to see you for just a few minutes before you left and I was able to kiss you on the head. Daddy and grandpa Bill got to go to Riley to be with you right away, but mommy had to stay in the hospital and wait to be discharged. My blood pressure was very high for obvious reasons, but the doctor wanted to make sure that it did not get any higher before I left. It was so hard for me to not be where you were. To not know what was going on. To not know if I would ever see you alive again.

I got discharged from the hospital around noon and came to see you at Riley. You looked so much better by the time that I got there. You were out of immediate danger, but our journey had just begun. Like I said earlier, things have not been easy for us these past three months. I will continue our journey in the next blog, but please don't you ever forget that mommy loves you always and forever.