9 Month Update

Oh darling Bri Bri. It’s been so long since I’ve updated everyone. First let me start off with how much I love you. Don’t you ever forget that.

Okay. Where to even begin? I know that I’m going to leave out some details since it’s been months since I’ve updated this, but I will try my best to remember the important stuff. We’ve been quiet for the past few months. Things haven’t been going too bad for you health wise, but we’ve had some other issues to work out. We’ve gotten your stools down to about 2-3 a day. Mommy has felt very comfortable with where we are at. We aren’t going too crazy with your solid foods yet, but we have been able to try actual pieces of banana, Cheerios and whole wheat spaghetti with very basic tomato sauce! Mommy even attempted to make you some “pancakes” made out of flour, your Nutramigen formula, and some banana baby food for flavor. They didn’t turn out great, but it gives me something to experiment with.

You had your 9 month check up on June 10^th. You weighed 18 pounds 4 ounces and were 27.5 inches long. You hadn’t even gained a pound since your 6 month check up and had only grown half an inch. Your pediatrician was a little concerned about this slow growth, but since you are developing normally, she just wants to keep an eye on your growth for now. It looks like you are just going to be a small baby.  She did push me to try more foods with you, though. She said obviously to be cautious of your known allergies, but we need to broaden your foods if we can. As I said earlier, I haven’t really been pushing your limits. You have certain things that you like and will eat just fine, such as your baby oatmeal, and we just haven’t branched out too much from what we know you can have. The pediatrician doesn’t know very much about FPIES so I feel like our food guidance really should come from your specialist anyway. I did mention to the doctor at this time that we’ve been seeing a lot of high fevers. You actually had a temp of about 102 degrees at your checkup. She checked your ears and throat out and could not find a source of infection at that time.

When we went in for your April appointment with your specialist he wanted us to try to introduce some soy into your diet before our June appointment. We picked out a sweet potato puff that had soy as a main ingredient and gave you 4 small puffs the evening of Saturday, June 15. We saw the effects almost immediately. You went up to 6 stools a day on Sunday, Monday and Tuesday, but we continued to give you a small amount of puffs each of those days. You had an appointment with your specialist that Wednesday, June 19 so I was curious to see if he would want us to continue with the soy or not. He said that you aren’t losing any nutrition right now from not having soy in your diet, so we will not be trying soy again until you are about a year old. It is disappointing because it would have opened up a whole new world of foods for you to eat. We’ve made so much progress to this point and we do not want to go backwards. You weighed 18 pounds even at this appointment, so your weight was down from the week before. We just attributed this to all the extra stools that you had from the soy experiment.

We just started a new day care about three weeks ago. It is an actual day care center so we are dealing with several different caretakers. It has been a challenge to make sure that everyone is on the same page with your food issues. It has also been a challenge to try to explain to them that you always have loose or runny stools and that they shouldn't freak out if they see mucous or blood in a stool. I was worried that we may see blood again after the soy experiment so I did warn the center and you should have seen the look on the lady's face. It was like you came from Mars baby! Plus your diaper rash came back in full force. I mean you were raw. I swear people look down on you as a parent if your baby has bad diaper rash. They just don't understand the circumstances we are dealing with. 

We have noticed the past few months that you’ve been getting frequent high fevers, but we just dismissed that as being from teething. Even though they would get pretty high, I was never too concerned. The pediatrician was not happy with me when I told her this. I’ve also noticed that as we have been able to give you more solid foods, you haven’t really been digesting them properly. An hour after we give you something, it comes back out basically exactly the way it went in. Chunks of banana or partially chewed up puffs end up in your stools. I know that can’t feel good. It’s like your stomach and intestines are not breaking food down. This means that your body would not be absorbing all the nutrition from the foods given to you. This could be a reason that you are having very slow weight gain. 

This past weekend you ended up getting a fever again on Saturday night. It got up to 104 degrees, and I was tempted to just take you to the ER that night, but I didn’t want to overreact. You had a really rough day on Sunday as well. Finally yesterday morning when you still had a fever hovering around 102 degrees I called the doctor. Your daddy had the day off work so he took you to your appointment. Your doctor, again, couldn’t pinpoint the source of an infection. Your weight was down to 17 pounds 14 ounces. You have lost half a pound in the last two weeks. That may not sound like much, but it is significant considering that you haven’t even gained a pound in the past three months and now you’ve lost over half of the weight that you had gained. We now have to track your fevers and see if we notice any sort of pattern so we can report back to your doctor. We may be getting some blood work done in the near future to do some further testing if these fevers persist.

The fevers along with the lack of proper digestion and weight loss opens up some new concerns for us. It is rare that babies get diagnosed with Crohn’s Disease, but I’m afraid that that is where we may be heading based on your symptoms. Many babies who do eventually get diagnosed with Crohn's initially get misdiagnosed with food allergies or FPIES. Crohn’s Disease usually brings along frequent and unexplained high fevers due to infections in the intestines. This is initially very hard for doctors to diagnose since it is not something that can easily be checked like the throat or ears. We need to further discuss some things with your specialist and do some testing before any official diagnosis is made. 

So this is where we are my beautiful baby girl. I hate when you are not feeling well. Mommy wishes she could just snuggle you all day long on your bad days. You are very resilient, though, and always seem to bounce back with a smile. Mommy loves you so very much my little lady. Always and forever. 

Fighting Food

Beautiful Bri. Mommy has not written an update in a very long time. We've had a lot going on lately so I'm a little behind.

Your fight with food seemed to be on the right track. You were on zinc drops for two weeks, per your GI specialist, and they really seemed to help. We got your stools down to an average of 1-3 a day. That is within the normal range for children or adults. Mommy and daddy are very relieved about this. Your diaper rash is almost completely cleared up as well. That is huge progress for you my dear! With so many steps in the right direction, everyone felt like it was time for you to start some baby food again. We were very hopeful.

We started with peas because this was a baby food that we had tried before so we already knew what your previous reaction to peas had been. You seemed to enjoy eating them! You like being able to eat off of a spoon and participate in meal time with mommy and daddy even if you were just eating simple peas. You never got a rash on your face or in your diaper area so we were very happy about that. You did have some pretty bad tummy pain and gas that kept you up almost all night the first night after we started with peas. That was worrisome, but we decided to keep giving you baby food. The only way to really test this food stuff is to just keep going with it and see how you react. After 3 days with peas, you didn't seem to have anymore tummy pain, but you did have diarrhea. As long as the pain was gone, we decided that we could live with the diarrhea, and decided to try some new foods. We tried sweet potatoes, bananas and peaches. Each time we would wait 3 days when we started a new food to make sure you didn't have a reaction to it before we would start anything else. We were very careful. We gave you baby food in the morning and in the evening for 12 days. On day 9, though, the bad diapers arrived. One bad diaper didn't worry me too much, but we saw them for 3 days in a row. On the third day we decided to stop giving you baby food. The only real way to describe these extremely smelly diapers is black, liquid tar. Black colored stool is a pretty good indication of blood in the upper GI tract. You have a doctor appointment on Monday so we will probably have to test your stool, but I'm pretty sure that test will come back positive for blood in your stool.

I called your GI specialist to update him and get some guidance on how to proceed. He told us to discontinue giving you any baby food and we will discuss the next step on Monday. I'm very curious to see what the GI specialist is going to have to say at your appointment. I have no idea what the next step could be. It is mommy's worst nightmare that your body won't be able to handle food. It is literally like your body tries to fight food like it is some kind of foreign object that it needs to attack and get rid of. I hope you aren't on a liquid diet forever! I will try to update everyone next week about what we hear from the doctor.

So you are back to just having your yucky Nutramigen formula my baby girl. I'm sorry. It breaks my heart to see you cry when we start eating because you are beginning to realize that we are doing things that you can't do. You are so smart. At least you seem to be developing normally even with your food issues. You crawl and play and bring a lot of joy to our lives. We know this battle with food isn't even close to being over, but we will continue to fight baby! Keep being strong and patient with us darling. Don't you ever forget how much we love you, always and forever.

Specialist-FPIES

Oh my little sugar pie pumpkin butt. Yes, that is what I’ve been calling you lately. J You sure are a handful. Mommy has been very bad about updating this blog lately. A lot has happened the past few weeks.

   

Last week you gave us quite a scare. You had a pretty severe reaction to what we assume was something cooking in the kitchen. Your daddy started making dinner around 5pm last Wednesday night and by 5:30pm when I got home from work you were already starting to have a reaction. You hadn’t had a bottle yet, so we think that your reaction could possibly have been from just simply breathing in the air that was filled with food particles. Daddy used an entire stick of butter to baste a turkey in so there was definitely some stuff in the air that you would have been allergic to. It is SO scary to think about you having such a reaction to something that you didn’t physically ingest, but just breathed in! Sometimes this is almost more than mommy can handle.

Ok so back to what happened. At 5:30pm I went to change your diaper and you were bright red and swollen in your diaper area. It was just like what we saw when you tried green beans. I just left your diaper off and you rolled around on a blanket naked for awhile because I knew that your diaper area had to be painful. You were pretty fussy all evening, but I didn’t notice anything out of the ordinary before you fell asleep. At 2am you woke up screaming. I mean I jumped out of bed from a good sleep because you were so loud. You had a very messy diaper so your little bottom was raw and painful. You were inconsolable. Mommy even went upstairs and woke daddy up and told him I thought we needed to take you somewhere. I didn’t know what to do. I just wanted to cry with you because it made me feel terrible that you were in so much pain. After I got both you and I calmed down, I made a bottle for you. Once I started to feed you the bottle I noticed that you were having some trouble eating. I noticed that you couldn’t close your mouth all the way around your bottle. Then I noticed that your tongue and bottom lip were pretty dang swollen! You’ve never had that happen before, at least not that I’ve noticed, from any of your previous reactions to things. I thought that your throat was going to close up and that you wouldn’t be able to breathe! I was scared. Again, I didn’t know exactly what to do. So once you fell back to sleep, I just stayed up and watched you breathe. After about an hour and a half of just watching you, I felt pretty confident that you were breathing fine so I put you back in your crib.

As soon as the doctor’s office opened Thursday morning, I called and they got you an appointment at 9:45am. Your pediatrician checked you out and I explained what was going on. She finally gave us a prescription for a medicated diaper rash cream. We’ve seen constant diaper rash since you were three weeks old, but what you have right now is very severe. The doctor also contemplated switching you to an amino based formula called Neocate. It is obtained by prescription only and not many pharmacies carry it. From what I’ve gathered it is kind of hard to come by unless you order direct from the company itself. It is even more expensive that your formula right now. Daddy did a search online and four fourteen ounce cans cost about $160. You can go through one fourteen ounce can in about 3 days with how much you eat. I’m hoping that if we do ultimately have to switch formulas, the company who helps us out with your Nutramigen right now will also be able to help us get and pay for the Neocate.  Mommy was getting frustrated because it sounded like the same old story we’ve been getting since you were three weeks old. Make a change and wait, wait, wait. Finally, the doctor told me that she was going to go consult with one of the other pediatricians in the practice. After just a few minutes she came back into the room and told me that they were going to refer us to a specialist! FINALLY! Mommy was so happy at this news. We’ve been wanting this referral for months now. The doctor did tell mommy that if your tongue and lip ever swell up again to take you to the ER immediately. Allergic reactions usually get more severe after several exposures to the allergen. Next time your throat really could close up so we need to be pretty cautious about things.

We did have your specialist appointment with a Riley Pediatric Gastroenterologist yesterday. He was awesome and made mommy feel very comfortable. After looking over your medical record and having us explain your situation he did his evaluation. You did a great job even with all of the prodding and poking baby girl. He THINKS that you have Food Protein Induced Enterocolitis Syndrome (FPIES). http://fpiesfoundation.org/about-fpies-3/ He also thinks that you have a zinc deficiency because you have so much daily diarrhea. We are still seeing 5-10 diapers a day with loose stool which means that your insides and bottom are just not able to heal. Zinc is what helps your insides heal, but your body never has the chance to absorb zinc because food just goes through you too quickly. For the next week we have to give you zinc sulfate drops to hopefully help your tummy and intestines start to heal. Only one pharmacy in the area was able to make the zinc sulfate drops for us so we will be picking those up and starting you on them this evening. If the zinc helps, we should see your stools lessen and your diaper rash clear up in about 7 days. If in 7 days we do not see these changes, we will start you on the Neocate formula. We have to do a follow up with your GI specialist in 7 days to update him on your situation and we will have another appointment at the end of March. Ideally if we get your insides healed up a little bit, we can introduce some veggie baby food in about 3 weeks. We will much better be able to evaluate your food allergies if we get your stools under control first. It is very, very rare that an infant literally cannot tolerate any type of food protein so we are hopeful that we see some positive results in the next 7 days. We might have been confusing your reactions to the solid foods that we had tried before with the symptoms of FPIES. I hope that you do not end up being one of those rare babies that cannot tolerate any food at all. The article below is about a 3 year old boy who has FPIES and cannot tolerate any solids. He drinks 20-30 bottles a day of Neocate Junior formula. I don’t want that to be you my darling. http://abcnews.go.com/m/blogEntry?id=18573441&ref=http%3A%2F%2Fwww.yahoo.com%2F

The GI specialist said that we will most likely still need to see an allergist, but he will be able to refer us to a Riley pediatric allergist and we will not have to get the referral through our regular pediatrician (thank goodness). We need to really work on getting some solids into your diet these next few months. If a baby has not started solid foods by age 9 months, sometimes they develop food aversions where they will refuse to eat any solid foods that you attempt to give them. Since you seem to have a very severe allergy to milk protein, the GI specialist said that we may need to introduce you to milk protein in a controlled setting in a doctor’s office or hospital when that time comes. I don’t think we will try milk protein anytime soon baby. Probably not for years at this point. I could write so much more about the “what if’s” that we learned from the meeting with the specialist. For now I’m just going to leave it at this. I will explain more when the time comes, if the time comes...

So mommy feels good about things baby. I feel like there is at least a plan in place now. I know that if in a week we are not seeing results, we move onto the next thing. I like having a plan. We all know how mommy’s plans have gone these past 6 months baby so I’m not getting my hopes up too much. I AM hopeful, though, and thankful for some direction on your situation. You are such a trooper. I hate to think about how much pain you have already endured in your lifetime and how much pain you deal with on a daily basis. You are amazing and mommy loves you so much. Always and forever. 

Allergic Reactions

Happy Valentine’s Day my darling. Mommy hopes that by next Valentine’s day you will be able to eat yummy treats, but only time will tell if that will be possible for you. We continue to struggle with your eating and food options. It doesn’t look like there is an end to this in your near future…
I haven’t updated everyone on your situation in a few weeks so we have a lot of catching up to do. Let’s start with the biggest change to our feeding journey so far. As of February 4 you are now only drinking Nutramigen formula and no longer getting any of my breast milk. It was not an easy choice for mommy, but I do not regret the choice that I have made. I do not feel as guilty as I was expecting to feel, but I have felt a lot of other emotions that I was not anticipating. (My emotions have been extremely up and down the past few weeks and I have anxiety about EVERYTHING) I just feel completely replaceable. That thought hadn’t even crossed my mind until I stopped pumping. Anyone can feed you your bottle of formula now, and I no longer contribute anything special to your bottles. That makes mommy sad. I do personally feel better and healthier since I’ve gone back to eating a regular diet, but that makes me worry even more about your diet. I know now that my breast milk must not have been providing you with very much nutrition at all. If I couldn’t stop losing weight, what made me think that you would be able to gain weight from what I provided you? I almost feel guiltier now for providing breast milk for as long as I did than for deciding to stop providing breast milk.
So far we have seen an allergic reaction to every solid food that you have tried. This is very frustrating and scary for mommy and daddy. You are five and a half months old and should be well on your way to having solids become a regular part of your diet. I don’t want you to be behind on things, but we just don’t have a choice right now. So here is how your solid food adventures have gone:
Rice cereal: We tried rice cereal for 4 days in a row. The first day we mixed some up in a bowl and fed you about two spoonfuls just to see how you would react. You didn’t like it. We could tell by your facial expressions! It was funny and you made mommy and daddy laugh a lot at first. A few hours later, though, we weren’t laughing anymore. Your tummy was so upset. You screamed. You needed changed every hour with diapers full of stool. It was just like how it used to be except we weren’t seeing any blood in your stool. We weren’t sure if this was just the normal process of a baby getting used to a new food, or if it was an abnormal reaction. Everyone says that a little rice cereal in a baby’s bottle before bed will help them sleep through the night. Well it did the complete opposite for you baby. I literally would put a pinch of cereal in the bottle that you had right before bed only. You wouldn’t sleep for more than three hours at a time, and you would wake up starving because everything you were eating was just coming right back out. It was like we had gone back to how you felt when you were a month old. I had forgotten just how bad it had been in the early days of your life. Things are so much better now, and I don’t want them to go back to how they used to be. I wanted to keep trying rice cereal to see if your body would get used to it, but after 4 days of you just feeling horrible, we decided to stop. You had very bad diarrhea for about a week and a half after we stopped feeding you rice cereal. We had a few ruined outfits and we had to change your crib sheets almost every night. It was messy, and it was not fun. I don’t think we will ever try rice cereal again.
Peas: About a week after we stopped seeing the diarrhea from the rice cereal, we decided to try peas. We tried peas for three days in a row. You LOVED peas! You couldn’t wait for that spoon to get to your mouth. It was so fun to feed you and see your reaction to this taste. I was glad to see you getting some enjoyment from a flavor. We only fed you a few spoonfuls of peas trying to be as cautious as possible about a new food experience. You quickly developed a rash on your cheeks and chin. You have very sensitive skin, so I thought that maybe the food had just irritated your face. Then you also developed a bright red rash in your diaper area that was different from your diaper rash. You have had diaper rash with yeast since you were a month old so sadly diaper rash is part of your daily life. I know and am very familiar with your normal diaper rash so I can 100% say that the rash you have experienced in your diaper area after trying solid foods has not been normal for you. Peas gave you diarrhea and we continued to see it for 2-3 days after we stopped giving you peas. You had some strange dry spots on your body after you ate peas as well. I thought maybe this was just because the weather was cold and dry, but I always put lotion on your skin multiple times a day. It wasn’t normal for you so I did some investigating, and dry spots can be a sign of an allergic reaction.

Carrots: You didn’t care for the taste of carrots and weren’t very receptive to trying them so we only gave them to you once. You developed a rash on your face, in your diaper area, and you had diarrhea for 2-3 days. I didn’t notice any dry spots from the carrots.
Green Beans: We tried green beans this past Sunday night. You weren’t that interested. I have to wonder now if you just knew that it wouldn’t make you feel good so you were trying to tell me that you didn’t want to eat it. I should have listened to you better baby. You are only five and a half months old, but you are definitely beginning to figure things out. I promise I will listen to you better from now on. Mommy was just so set on finding something you could eat because I want you to have a more balanced diet since I’m still not a big fan of the ingredients in your formula. Immediately after you ate green beans, you developed a rash on your face and a bright red rash in your entire diaper area. I mean it looked like you were on fire down there. We of course saw diarrhea and you had dry spots on your body again. Monday morning we experienced something new, though. I put you on the changing table to get you dressed for the day. Everything seemed normal. Then you started high pitched wheezing like you just couldn’t breathe. Your eyes got big like you were terrified. You looked straight at me like you knew you needed help. I quickly scooped you up and started patting your back. The wheezing didn’t last long, but it scared you. You sobbed uncontrollably. I just wanted to get you calmed down and make sure that you were okay. Once you finally calmed down you had pretty much exhausted yourself. You fell asleep, and I’m not going to lie, I (probably unnecessarily) worried you wouldn’t wake back up. Mommy was scared, but honestly it didn’t phase me as much as it probably should have. I didn’t immediately call the doctor or anything. We’ve dealt with so much that I feel like I’m immune to things that should cause me concern. I can’t say for sure what the wheezing was from, but it definitely got me thinking about how scary all of this food allergy stuff could potentially be.
We already had a doctor’s appointment scheduled for Tuesday afternoon to do a checkup on your head circumference and check your weight. I called the office on Monday just to verify that we would be seeing the doctor at that appointment. I went in there armed with my concerns and questions. The good news from your appointment is that your head has not grown at all since your last appointment, but your body has. This means that you are not so disproportionate now. Thankfully, we don’t need to get a CT scan of your head or anything like that at this time. You have also gained about two pounds since your appointment in January. This is great news. It makes me feel better about the decision to exclusively formula feed you. Then it was my turn to voice my concerns to the doctor. She listened, but had an excuse for almost every symptom I brought up. She told me you have sensitive skin, that babies skin gets dry at this time of year, that the diarrhea might mean that your intestines just can’t handle the solids yet, and that the wheezing may have been from some reflux that got caught in your throat. I understand being rational about all of this, and I do realize that sometimes I am irrational about things. But I know your normal baby which means I know when things just aren’t normal as well.
I told the doctor that at this point I think we need to see a specialist. She agreed to discuss with us the option of seeing a GI specialist or allergist, but she would not refer us to one just yet. She wants to wait a month and monitor how you do with just all formula bottles. She doesn’t want us to try any more solids for now. She wants to figure out what your normal stool pattern will be with all formula because we don’t know what that is. A specialist is definitely going to want to know what your “normal” is. We started solids while you were still having breast milk mixed with formula in your bottles so you’ve had a lot going on in your tummy this past month. You are up to about 7-8 diapers a day with stool in them. Usually it’s quite a bit of stool too. As I said earlier, we’ve been going through a lot of outfits and crib sheets this past month. You have a raw bottom with open sores that bleed from your diaper rash. Sometimes when we go to change your diaper, especially after a bath, you arch your back and scream in pain because you don’t want us to touch you or put a diaper back on. We’ve been having completely naked time every night to help you air out. I don’t want constant diaper rash or 7-8 stools to be your normal baby. So I am willing to wait a month to let your tummy calm down a little bit. We’ve put it through a lot the past month. We just weren’t prepared for any of this darling. Mommy read the baby books while she was pregnant. None of your experiences, from your birth until now, were ever mentioned in those books. Maybe mommy should write a new book. One that helps other mothers going through situations not mentioned in those widely accepted “normal motherhood experiences” books.
We did have to collect multiple stool samples from you Tuesday night to take back to the doctor’s office for testing. The doctor wants to make sure that there isn’t blood in your stools still. Sometimes blood isn’t visible, but is still present. If the test comes back that blood is still present, we may need to switch your formula. It is very rare, but some babies are allergic to even hypoallergenic formulas. I hope that isn’t the case because I just got everything finalized to get your formula delivered to our house and paid for by insurance, but if we need to try something else then that’s what we will do. We should hear the results today or tomorrow. There is just no way you can be allergic to everything baby. I mean that is so so so so very rare. I guess it’s possible, and really with you nothing should surprise me at this point.
So again we will wait. I’m sure mommy will work herself up with worry over this next month. I’m already paranoid about you getting your hands on a food that you shouldn’t. You try to put EVERYTHING in your mouth and you will soon be mobile. We saw how negatively you reacted to simple vegetables, so I can’t imagine if you ingested something with milk in it! Why does food have to be such a dangerous thing for you? I’m already worrying about how it will be when you are a year and a half old. Everyone around you will get snacks that you won’t be able to eat. How is that going to make you feel? How do you make a one and a half year old understand that they can’t eat something because it will hurt them and potentially be very dangerous for them? How do you make them understand that they are different, but that it’s not a bad thing to be different? I worry that you will need an EpiPen if your food allergies are deemed too dangerous. I worry that your throat will close up due to an allergic reaction and we will lose you. Your 6 month appointment will also be where we need to get tests done to make sure that the hole in your heart has closed up properly so that is just one more thing to worry about. I worry a lot baby. Now we have a whole month ahead of us for mommy to worry.
Sometimes I feel like I’m crazy or overreacting, but then I look at your sweet face and I remember why I’m fighting so hard for you. You are my little girl, and I only want what’s best. On the outside you look fine like a normal healthy baby, but something definitely isn’t right with your insides. I don’t want to settle for your normal to be feeling bad all of the time. There has to be an explanation and there has to be something we can do about it. Mommy will keep trying my sweet baby pie. Don’t you forget, mommy loves you always and forever.

The Fearless Formula Feeder Blog!

The FFF Quick-and-Dirty Guide to Formula Feeding: Recognizing Sensitivity, Intolerance or Allergy to Formula | Fearless Formula Feeder
If you have a few minutes, please read the blog post in the link that I have attached to this post. I know that some people feel like I am way over exaggerating our situation or even lying about some of this stuff, but the blog link above is so similar to what we've went through. It gives me some comfort to know that I'm not just crazy. I can't believe its taken me this long to find her blog. She also wrote a book about not feeling guilty about formula feeding. I can't wait to purchase the book and read it!

So rice cereal is not agreeing with your tummy at all so far. It upsets your tummy so much that you won't sleep for more than about 3 and a half hours at a time at night and I've had to change your clothes and crib sheets several times from blow-outs in your diaper. I literally put a pinch of cereal in your bottle last night and your crib was a mess. I know the only way test if this is just your body getting used to a food change or an intolerance to rice is to keep giving it to you in small doses, but this is exhausting. Might try it just a few more nights and then call the doctor for some guidance because I don't think how this cereal is making your tummy feel is normal.

On a sad note, your daddy is having a very rough day today. One of his waitresses had a baby around 8:30pm last night and the poor sweet little boy passed away around 1:30am this morning :( Your daddy is very upset about this and the whole thing just makes me feel terrible. That is so heart breaking. The issue had went undetected during the pregnancy so this couple had no idea that their baby wasn't healthy. If you have a moment today, send some positive thoughts to this couple that I will leave unnamed out of respect for their situation.

It is situations like this where I take a step back and think that no matter what we are going through right now, I have you baby. I can hold you and kiss your sweet face. It makes me sad for parents out there who aren't able to do that. I love you my baby girl, always and forever.

Baby Food

Well sweetie I haven't written an update in far too long. You had your 4 month visit at the doctors last Monday and of course it did not go exactly how I expected. Nothing with you has so far, and I think I just need to get it in my head that nothing with you ever will. I need to start expecting the unexpected with you. That way I won't keep getting my hopes up.

At your official 3 month visit (I say official because we have been to the doctor so many times its hard to keep track of exactly which visit I'm talking about) your weight had gone up to the almost the 50th percentile because we had finally gotten some control over your food allergies. So you were about average for your age at that time and that made me feel so hopeful because we've had so many issues with your allergies and weight. On Monday we learned that your weight has dropped back down to the 20th percentile for your age :( This is frustrating and confusing for mommy. So mommy has made a tough decision this week. Once we can get you on a more balanced diet with your formula, some baby cereal, and some fruit and veggie baby food I am going to stop breastfeeding. So I will still be pumping for at least another month, but the end is in sight. It makes me feel relieved and yet so very guilty at the same time. Obviously what we are doing right now isn't working for either one of us darling so mommy needs to do what is best for the both of us. I know that some of our readers will be surprised at the decision I have made, but I feel like I fought a good fight and now I need to accept defeat. Please don't think that I made this decision without weighing my options. There is only so much I can put my baby and myself through before I need to re-evaluate her feeding situation. I tried my hardest and made so many changes to my diet and lifestyle, and I'm honestly very proud of myself for sticking to this for as long as I did.

So now lets talk about baby food. We finally found a brand of packaged rice and oatmeal baby cereal that you can eat! Almost all packaged baby cereals have soy in them, but a brand called Beech Nut (http://www.beechnut.com) makes their rice and oatmeal cereals dairy and soy free! So if you have a baby with food allergies or know someone who does, please suggest this brand to them. A lot of their foods are soy free, dairy free, gluten free and/or vegetarian. It is more expensive of course, but well worth it if it gives you an option for food for your baby. I thought for sure that we were going to have to make all of your baby cereal from scratch at home. I started looking a few weeks ago at our normal grocery store places for things that you could eat and I was so discouraged because I hadn't found any options. There is one Kroger in the area that has a great allergy section. It is two whole rows of foods that are mostly gluten free, but they have a lot of soy free and dairy free options too. This is where I get a lot of my food these days, but we have to make a special trip to this Kroger so I decided to take a look at their baby food selections while we were there last week. I was so excited to find something you can eat! We tried the rice cereal last night and you were not a big fan of the texture! It was funny to see you try a "solid" food. Hopefully soon we can introduce your baby oatmeal and single fruit and veggie options. We have to introduce new foods very slowly to make sure that your tummy can handle them. I hope as long as we keep dairy and soy out of your diet for now, we won't see any more allergic reactions from you.

The doctor did discuss trying to get some soy back in your diet at around 6 months just to see how you would react to it. If that went well, we could try dairy some time after that. Children can start outgrowing their childhood allergies as early as 6 months, but usually it takes longer than that. I'm really hesitant to introduce dairy back into your diet until you are at least a year old I think. I'm open to trying soy before that, but I just don't want to rush the dairy side of things. You are still at such a low weight that I don't want to chance you not being able to gain weight again due to allergic reactions.

So at your 4 month well visit, the doctor wasn't as concerned about your weight because you've always been low weight. She was very concerned about the size of your head, though. You have always had a big head. Your daddy has a big head and your uncle Alex has a big head so you get it from both sides. Your body had been growing proportionately, though, until this last visit. Your head had always been in the 70th percentile range for your age. Well Monday we learned that it has jumped up to the 95th percentile! This is not good. So your weight for your age is at the 20th percentile, but your head is in the 95th percentile. I'm not sure how you can hold your head up child. We had to set-up another doctor's appointment on February 12 just so that the doctor can take a closer look at your head. If she feels like it is still continuing to grow at the rate that is had from 3-4 months, she is going to have you get a CT scan. The concern here is that you might have swelling of the brain or too much fluid around your brain. This news made mommy scared. Thank goodness for other mommies writing blogs out there because I turn to them anytime we get scary news about your health. It is comforting to know that other moms out there have gone through the things that we have. So of course I Google and blog searched for babies with big heads and found out that in most cases things end up okay. My fingers are crossed for you baby! I keep telling telling myself that we can't take anymore discouraging news yet we still keep hearing it. One of these days we will go in for a doctors visit and hear good news I just know it. Or maybe that's just a dream of mine. Again, I need to start expecting the unexpected with you so then I won't be let down.

I do want to say a few things about these "well" visits at the doctors office. When I was calling around to other pediatricians offices to get a second opinion on you in December, it became very clear to me that you are not considered a "well" baby. I guess I knew this in my own mind, but to have someone else actually say it to you kind of makes the realization sink in. There are a lot of pediatricians out there who only deal with "well" children. These are the kids who come in for their scheduled visits and shots and maybe occasionally if they get a cold, but other than that don't have any other health issues. I guess we are lucky that we got into our doctors office when you were only four days old because I was denied by almost every other pediatricians office for a second opinion because you are not a "well" baby. I understand why they do this. Pediatricians are busy and most do not have time for hour long office visits and that is how long ours last most of the time because there is always something that comes up at these visits. Its just kind of sad for mommy that you are labeled that way right now.

Well dear I should get off of here. I am glad that you are feeling better after last week's shots. You are back to being my smiley, cuddle-bug baby. Just know that I love you always and forever and want what is best for you my darling baby girl.

Is medicine failing breast feeding moms?

Is medicine failing breast-feeding moms?
This is an interesting article that I read today.

Diet Changes

Wow sweet baby B. It's finally time for mommy to write a post about all of my diet changes. We are now past the holiday season where I was around a lot of good food that I mostly could not eat so hopefully things will get even easier with my diet from now on.
So as I've said before, I have had to cut out all foods with milk products, milk protein and soy from my diet so I can continue to provide breast milk for you even if it is just part time. Right now your bottles are half breast milk and half special formula. You are starting to eat more at one time, but less times a day. This has been a challenge since I'm not producing more breast milk during the day than I used to, so sometimes your bottles are a little more formula than breast milk. This bothers me, but it is the best that we can do right now. I'm trying to stress less about pumping every so many hours or a certain amount of times a day. I just need less stress in my life right now.
Mommy has never been able to stick to a diet on her own baby. If I was making all these diet changes for myself, I would have cheated on my diet so many times by now especially with all the holiday food I've recently been around. Since I am doing this for you, though my darling, I've been able to stick to it. I have to say I'm pretty proud of myself. It has been extremely hard, costly, and caused mommy quite a bit of stress. I feel like I'm hungry most of the time these days, but every day I'm learning about new foods that I can eat or trying new recipes using milk free/soy free butter substitute and almond milk.
I don't branch out with foods a lot right now. I'm afraid to branch out too much at this point because I'm fearful we will find something else that you might be allergic to. Right now the foods that I've been eating have helped you feel better so even though a lot of what I eat is not extremely flavorful, as long as you are happy that is all that matters to me. I eat a lot of pasta (egg or whole wheat noodles) with pasta sauce and bacon pieces in the sauce for some added meat protein. I have to be very careful about what pasta sauce I choose. When I go grocery shopping these days I literally have to examine every single food label. Every Kroger brand pasta sauce has milk in it, but there are some Prego options that I can have. I used to always just buy whatever was on sale. Cheap was my motto when it came to grocery shopping. I would say all these diet changes have made our grocery bill go up about 200%. I'm not even exaggerating about that number either baby. Eating healthier and having to switch to these different foods is definitely not cheap. I also eat a lot of rice, veggies, and imitation crab made from other fish. Sometimes it is the little things that you might not think about that will get you too. Most taco seasoning and spice mixes/rubs will have either a milk or soy ingredient! I would have never guessed that, but we figured it out the hard way. My diet really is limited at this point. I hope to add specific recipes to some upcoming blog posts soon so that if any other mothers out there are going through the same thing, they have some recipes to start with. It has been difficult for me to find resources online about milk free/soy free diets. There was a mom who created a spreadsheet of foods that she liked to eat when she was going through the same diet changes for breast feeding purposes. I have found this spreadsheet to be very helpful for grocery shopping. I think that I may create a spreadsheet of my own in the next few months with some of the foods that I have found as well. Here is the link to her spreadsheet: https://spreadsheets.google.com/pub?key=tSt1VyIgb6Li5FMjMer6xZA&single=true&gid=0&output=html
I am grateful for companies like Lays who do fry some of their chips in sunflower oil instead of vegetable oil which almost always contains soybean oil. Regular Lays BBQ chips or regular plain Sun Chips are my junk food go to right now. It is just nice to have at least a few options of things that I can quickly put in a bag and take to work. I don't have the option to order Jimmy Johns or grab Arby's if I don't have time to pack a lunch in the morning because there is really nothing that I can eat at restaurants these days. I have to plan every meal and every snack. Sometimes this is very difficult especially when I work both of my jobs in one day and I'm out of the house for over 13 hours. That's a lot of food to pack and carry with me!
I love breakfast foods, but my breakfast options are very limited right now. I cannot just throw a yogurt or breakfast bar in my bag to eat on the way to work. I ALWAYS used to eat breakfast on the go because I value my sleep, but now I have to plan breakfast time into our morning routine. I do have some cereal options. Mini wheats and Honey Nut Cheerios are two of my favorites. I now use almond milk as my milk substitute. I have tried coconut milk before and I find it to be just a little too sweet for my liking. I do like SO Coconut milk coffee creamer for coffee when I drink it, though. I can also make my own oatmeal or cook up some eggs in the morning if I have time. Eggs now have to be cooked in olive oil or my milk free/soy free butter substitute because pan spray has soybean oil in it.
Next week I want to try to make no cheese lasagna. If I can find some almond milk cheese at a whole foods in the area I may try that on lasagna, but I'm really starting to feel ok without cheese. I used to love to eat cheese baby. I would eat it all the time on everything so it was a big change to cut that out. I have been missing sweets lately too. I want to try to make some milk free fruit pies soon. Your daddy made me some no bake cookies last week with 100% cocoa, natural peanut butter because regular peanut butter has soy in it and a milk free/soy free butter substitute. They are really quite good!
As I'm getting used to all these diet changes, things are getting easier. I'm craving less of the foods that I used to eat and I can tell that my taste for things has changed. I have just been craving fat lately. It is hard to explain, but I can tell that my body just wants fat. Not necessarily sweets or junk food, but fat. I used to eat a lot of fat in my diet, more fat than I needed. Honestly, I did not eat well before I changed my diet and to be truthful, my diet is not very well balanced right now. I'm glad that I'm still taking a prenatal vitamin since I'm breast feeding so I at least get the vitamins I need daily for you. I need to eat more fruits and veggies because I don't feel very healthy right now. I had you in September, but I weigh about 15-20 pounds less than BEFORE I got pregnant with you baby. So I've already lost all of the baby weight that I gained with you plus 15-20 pounds more on top of that in just a few months. It has been a rapid weight loss. I thought for awhile that my weight had kind of evened out, but I can tell that I'm starting to lose weight again in these past few weeks. You just keep gaining weight and mommy just can't stop losing it! Everyone tells me that I look good, but I just don't feel healthy. I know I shouldn't complain about losing so much weight, but I'm really not trying to lose weight right now.
I know my blog posts always seem negative and I feel like all I do is complain. I hope that everyone reading our journey can understand that mommy has had a very rough past four months. My body has been through so many changes. I had you baby. That's a huge adjustment to a woman's body to begin with. Then I've felt more stress than I could have ever imagined in these past four months. I've had hormone changes, diet changes, sleep deprivation, and depression. Physically I'm not sure how much more I can take and mentally I just feel kind of numb. I know that you are feeling better baby so now mommy needs to start taking better care of herself. You are my number one priority, but now that I have you taken care of, mommy needs to take some time and focus on myself. I made all of these changes for you my sweet girl and I wouldn't have it any other way. I would do absolutely anything for you. I love you so much and will always and forever.