Food Allergies Suck!

I guess I should say allergies SUCK! And so does asthma!

So I know I haven’t said much about what has happened to our sweet Josie on this blog (in the past). I have promised an update or story but never really did it. It was too hard for me to travel back down that road and re-live the events that occurred. It was emotional and terrifying. But most recently (a few days ago), we had her retested and this was my update:

At 9 months old she had an allergic reaction to diary and eggs. And days away from her 2nd birthday, she had an anaphylactic reaction to dates and cashews (tree nuts). I almost lost her that day (I’ll always and forever be grateful for the love and friendship of Shantel Brock-you are an Angel). While her lifeless body lay in the hospital bed and her lips blue and her lungs trying to pull in all the air they could, I lost myself that day. Since that moment, I’ve never been the same. I’m scared at every given moment. No one TRULY understands. It’s painful. Not only does she suffer, but I do too. I always try to get out with other moms to get Josie to play with others but most people don’t know that I suffer in silence. I worry. My anxiety has turned into panic attacks. I make myself sick. I worry about too many kids with too many food items and not being able to watch her every move. It’s literally drove me insane. To the point where now I am seeking help to be the best mother to her. Because that’s all I want. I want to be normal, too. I try to stay strong for her. It’s hard. And no one can tell me anything that will make me feel better. Only a parent of a child with allergies can explain or relate to the never-ending fear that lives inside. The nightmares. The “what ifs” that seems totally ridiculous (to most people). Well, my little girl got blood tested after her near death experience and PICU at children’s hospital (over a year ago). And the results were shocking. Almost unbelievable. And here we are, more than a year later with high hopes that maybe, just maybe something has gotten better. Maybe something she was able to out grow. I finally found her a fantastic allergist. Who sat with me today for 4 hours ya’ll! 4 HOURS!!!! Why? Well, here’s the story: I made the appointment because my sweet girl starts school in August (Pre-K). And also because I’m tired of harboring her from play dates. I make up excuses but never want to blame it on her allergies. Really, it’s my worry (is what I keep telling myself). I just want her to get out more! The allergist and I sat there and talked about blood vs. skin testing. Skin testing is much more able to tell you the truth rather then false positives. Her blood work could have very well had some false positives. The doctor and I were positive and sure that that was the case. She asked me if I wanted the “tree nuts mix” or each separate nut tested on her skin. I asked for each separate. We tested, dairy, egg, tree nuts (all), peanut and chicken via skin test. Prior to this we were both so excited that she may be able to try COOKED dairy and egg (it changes the protein), and she may eventually out grow this. Skin test usually take about 20 minutes to react. Josie’s took 20 SECONDS! Yup…you read that right! 20 seconds! My poor girl came back positive then ever to all the allergens that she once tested positive to. Only this time it was actually worse. The doctor lost hope at that point. Her face said a thousand words. Her voice changed. She seemed truly concerned. I asked if we had to go to the ER? Was it THAT bad? She said it was pretty bad but we would keep an eye on her, give her benadryl and all that we spoke of earlier was out the window. No cooked dairy or egg. No trials. No reintroducing foods. She even mentioned that the likihood of her outgrowing this is not likely and won’t be tested again until she’s 5 years old. My heart sank. I can’t help but feel immense guilt. What did I do to her? Why? What happened? I made her, why can’t I fix her? I tried to keep my composure so Josie wouldn’t read my emotions and get even more scared. The doctor knew it was happening…I lost it. If I could do ONE thing in this world it would be to take THIS away from her and give it to myself. I’d do anything to make this go away. So the entire point of this post? Well, because some people don’t take Josie’s allergies seriously. THIS FOOD IS POSION FOR HER! It’s immediate and it’s DEADLY! IT IS POSION! IT CAN AND WILL KILL HER! And I hate when people say “oh just a little tiny bit won’t hurt.” Or they let their kid sip on my kids cup (well, your kid just ate a cookie that contains eggs/dairy, whatever else). People don’t realize the seriousness of contamination. Did you know that when I almost lost her more then a year ago, she ate a teeny, tiny bite of a Lara Bar (dates and cashews)? Tenny tiny! That’s all it took. Seconds went by and BAM…ambulance, ER, PICU and almost intubation. FAMILY, FRIENDS: PLEASE, PLEASE, PLEASE take this serious. I can’t bear the thought of anything happening to my baby as long as I’m living on this Earth. I NEED you to understand the seriousness! I NEED you to respect my wishes. Understand why I clean like I have OCD! Because there ARE allergens in our home. THIS is why I have a hard time getting out. THIS is why I have a hard time meeting other moms and getting my child to play with others. She’s a great kid! She’s super sweet and smart and LOVES to play with other kids. I just don’t want to be the mom that looks like I’m crazy, or hovering or nuts. The PTSD from almost losing her was and has been hard on me. The nightmares still happen. It could be why my panic attacks are at night, randomly. I wake up crying some nights re-living that event. The images just don’t go away. So although I’d LOVE to meet up and have my kid play with a ton of other kids. I just can’t because of me. I’m grateful to the friends and family who understand. Who truly know that one teeny tiny bite can kill her. Who respect my “craziness” and know I’m not insane. I love my daughter. And without her, there’s no me. Everything I do and don’t do is for her (them). Below are the pictures from today. They are heartbreaking. They are scary. They are what they are. My girl is happy and healthy. What she eats, is all she knows. She doesn’t eat junk. She’s doesn’t live off fast food, she just eats to live…she doesn’t live to eat. We live in a society where eating is all part of socializing. So with me having celiac disease and Josie’s food allergies, we don’t get out much. And it’s sorta depressing at times. It’s a lot of work to leave the house to go somewhere. I always worry about what she will eat…what I will eat…it really IS exhausting. So this is the truth ya’ll. THIS is why I am who I am. Josie NEEDS a mom like me who is hypervigiliant. I am her mother and her advocate. Please understand…my daughters life is priceless to me.

***The top left is PEANUT. The bottom left is CASHEW (what she had a reaction to in the Lara Bar a year ago). To the right is Chicken, Egg and Milk (top to bottom).

After thinking about this for the past several days/nights, I’ve determined that I’m not stopping here. We are going to see another allergist next Thursday. I want more done. More testing. Most opinions. I can’t stop and won’t stop at “well, we will re-test her again when she is 5-years-old.” At first that was okay. But the more I think about it…no! I am not done! What can we do?! There has to be more! I want blood work done. I want it all. I want her asthma reassessed. People seem scared to touch her. Tell me what to do-I’ll do it!

Josie: Things I Don’t Want to Forget

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It’s hard to remember but I wanted to get this blog post published because the pictures are just so adorable.

Just a few things:

“Why? Cuz!”

“Mere Momma, Mere!” -as you ask me to sit down next to you.

“Daddy UP!” -as you’re asking to be picked up.

When you’re on the potty and you ask “iPad on the knees” “Toys on the knees” for your toys to be put on your knees while you finish your business.

You’re potty trained! And now you even go out in public and use the big potty there when I hold you up! I am so proud of you! Now, we just have to find an overnight solution. You do awesome at nap with no wet diapers. You are so smart, my sweet girl. I love watching you grow but I miss my sweet little baby Josie. You were the BEST baby.

Juliette: 3 Months Old and First Christmas

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Dear Juliette,

I don’t even know where to begin with this blog post. I didn’t want to talk about this on the blog, only because it makes my stomach turn. And I haven’t wanted to sit down and type the words out. I didn’t want to remember. I didn’t want to recount the moments where I almost (or so I thought) lost you. Just like I haven’t wrote about the story of almost losing your big sister to anaphylactic shock back in April. Because it brings back horrible memories, I start shaking just thinking about it and I honestly feel like I’m going to have a panic attack. But here we go…

It was a Friday and everything was as normal. I was giving you a bath around noon. Afterwards I took you to your crib where I would get you dressed and put on a clean diaper. It’s during that time that you usually cry because you hate it. You cry differently, though. It’s a mad cry. But you mad cry a lot. You get mad VERY easily and you’re very temperamental. I was just taking my time because I know that letting you cry isn’t going to “kill you”. At least that’s what I’d always say. But then your cries turned into silence and choking and you stopped breathing. You were stiff as a board and eyes were a steady gaze. Almost like you were having a stroke or a seizure. You wouldn’t flinch when I’d touch them. You were making this God awful grunting sound and starting to turn blue. When seconds felt like minutes, I ran out of the bedroom and into the living room to Facetime your daddy. I was in a panic and screaming “she’s not breathing!” He said “CALL 911!” So I quickly hung up and did so. 911 was awful! It makes me seriously scared of anything ever serious happening again. This woman I was talking to was an absolute idiot. I repeated myself over and over again. My address, my situation, my name. I BEGGED her to tell me how to do CPR on an infant. I’m a registered nurse for God sake, where was my brain? GONE! Everything I knew was gone. I was blank! I was out of body. I was having a panic attack. I couldn’t catch my own breath. Sobbing on the phone to this stranger, begging her to help me! You were not breathing. Time is brain, time is brain, time is brain…that’s all I could think. “HELP ME!” I kept screaming to the 911 lady. “TELL ME HOW TO DO CPR!!!!!” She never answered me. Not once. I started pumping your chest with my fingers, I laid you flat on the ground. I tilted your head back and stuck my finger in your mouth. Were you choking on something? Nothing was there. I was crying, begging you to stay with me. You were turning pale. I was terrified. What seriously felt like hours, was simply seconds turned into minutes. Time was at a stand still. You were starting to turn blue. “BREATHE!” I was pleading to God to please not take you. I’m so sorry I let you cry. I’m so sorry I didn’t pick you up. I’m so sorry, Juliette, I’m so so sorry. I had no idea what was going on. I had no idea what I was doing. Giving you CPR was terrifying. As Josie stood there and watched, all I could remember was her saying “oh no, baby sister!” I heard sirens (finally!) and 10 men ran into our home. They took you out of my arms and hooked you up to an EKG machine. At this point, you were breathing again. Your color was starting to slowly come back and you were so completely and utterly exhausted and fatigued that you could not keep your eyes open. You were pale. Almost lifeless. What the hell just happened? I didn’t know. But you were breathing now. Shallow. You were okay. Thank God! I was devastated, trembling. Josie was crying and hid behind her easel in her playroom. Scared. Scared of these men. The machines, the noises. We were both scared in tears. What just happened? What just happened to my baby? Your daddy took an emergency helicopter home that day. He came home that night about 5 hours after you were taken to the hospital. That’s as quickly as he could make it. And honestly, very fast considering his circumstances. EMS took you to the hospital. Josie and I followed after I packed and pumped my extremely engorged breasts (because I was trying to quit producing so much at the time). When we arrived at the hospital you were fine. Normal. Vital signs stable. As if nothing ever happened. The only thing that changed, leading up to this event, was that I gave you Earth’s Best dairy based baby formula. But you were fine. I had given you that several days before this. It’s the only thing I could think of that may have caused this. The doctor came in when I got there. He was a fantastic doctor. He truly listened. He cared. I told him what happned. But then I also showed him the videos. Thank goodness we have cameras all over the inside and outside of our house. These were life savers at the time. As Bobby was able to watch what was unfolding from hundreds of miles away, it was also recording important information. As I told him what was happening, he was convinced you were having a seizure. But after showing him that actual video and the events that occurred, he later changed his mind.

Diagnosis: Breath holding spell.

WHAT? Why? Babies do this? What do you mean she held her breath?

Yes. As much as that was a relief to hear, it was that much more concerning too. How often will she do this? Why does she do this? What do I do? The doctor says: “you walk away.” WHAT? NO! How do I just walk away when your child isn’t breathing, turning pale, blue and stiff as a board for up to a minute? How does a mom just do something like that?

You.just.do.

“Blow in her face” he says. “She got really, really mad.”

That came as no surprise to me honestly. Because you do get mad at EVERYTHING. You cry over everything.  And it’s never just a simple baby cry. It’s a scream, yell and mad cry.

Oh boy! This is different. This is going to be a challenge. You are going to be a handful, sweet girl. God is really giving me a run for my money this time, isn’t he?

Sometimes I feel like life is all a test. How far can you press me? How far are my limits? Nothing seems easy. Nothing seems like it’s just day to day and I can relax. I’m always uptight. I’m always so aware and my senses are heightened when it comes to my surroundings and my children. Since having children and almost losing both of them, I cling to home. It’s terrifying. And even more so when you’re experiencing these events all alone. With no family around. I should mention though, that I do have a wonderful neighbor. She was there when I needed her and came over to make sure everything was okay even though she was so busy planning her daughters 2nd birthday party. She even came up to the hospital to see us. I am so grateful for her and her friendship. It means a lot to me.

I can’t write anymore than that about that particular situation. Luckily, you haven’t done it again…yet. But I’ve been told you will. Even the pediatrician, that next day, told us you would. She told us to blow in your face, walk away and let you learn to be without me. I can’t though. As much as these moments of anger that you constantly express, I hold you. No matter how stiff your body becomes once you’re mad (which is almost every single cry), I try to bend you and sit you on my lap. I put my face next to yours and say “it’s okay”, “I’m right here, baby.” It’s terrifying.

God always gives me these situations. I know it only makes me stronger but I don’t want another reason to lose sleep. To keep one eye open. To have you stay in our room longer. To feel like I can’t walk away. To be terrified just to let you cry just a little. I jump at every whimper. It’s truly hard. You are so different, Juliette. Nothing like your big sister. It’s fascinating to me how different you both are. She was so easy. You are such a challenge. I’m grateful I’m not working because you take a lot of my energy. Most of it, actually. Some days I feel like I’ve given Josie about 2% of me. Some days come and go and I feel like I haven’t even acknowledged her. You require me in sight at all times. I can’t put you down without a cry and scream. And it’s always a mad scream. If I walk away and am out of sight, you scream. A part of me thinks that you’re a needy baby. But a part of me thinks this is because of that particular event. You are terrified. You don’t want to be left alone. As much as it scared me, it scared you, too. I just don’t know. All I know is that motherhood is tough. I don’t have it easy with you two girls. It’s always something to worry about. You keep me on my toes. Both of you. And at any given moment when things start to seem out of the ordinary with either of you, I jump, shake and start to breathe heavy. I feel like a panic attack is setting in. I’m learning to talk myself down. Learning to breathe and convincing myself to calm down.

Oh a happy note, you’re growing so fast. You are such a chunk! You’re gaining weight so quickly and you eat a ton! You’re a very gassy baby though no matter what you eat. And I am having a hard time getting you out of that Rock n Play. I wish I never would have bought it, honestly. I know it’s the feeling of being cradled that you love.

Your head control is awesome. Much more advanced than Josie’s was at your age. You’re strong! So strong I almost feel like you could get up and walk away when you have your moments of stiffening your legs in a rage.

Your smile is contagious and adorable, though. You do have a sweet side, believe it or not. I didn’t want to sound like you were an awful, terrible baby in this post, because you’re not. You’re a sweetheart. I think you are just trying to figure out this world. Figure me out and figure out how to be independent without my arms holding you 24/7.

I’ve been struggling to get my milk supply down. No matter what I’ve tried or how hard I try, I can’t get it to stop producing SO much! It’s definitely painful and stressful. I’ve dealt with clogged milk ducts, engorgement and lots of pain. I will be happy when it’s decreased.

I don’t have much more to say. Other than I can’t wait for you to grow out of this phase. And I do hope it’s just a phase.

I love you sweet girl. I can’t wait until you start crawling, mommy needs a break from holding you all.the.time. Despite all that has happened and just how much work you are, I truly do try to enjoy these moments because time goes by so quickly. Heck, your sister is potty trained. When did this happen? What happened to my baby Josie?

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