Here is my newest project! Awareness Critters… you can check out the project HERE
When you become a parent you know you will make mistakes, it is human and there is a big learning curve on how to go from being an individual caring for and raising a little person.You just pray those mistakes won’t leave lasting emotional damage or that you will have saved enough to pay for a good therapist if they do (just kidding, shoot for the first one- no lasting damage!). What is horrible about making mistakes when you are an allergy parent, is that your mistake often directly impacts your child(ren) in negative physical ways. Sometimes in very serious negative ways. You now pray that your mistakes don’t cause serious health consequences or death. And sadly I am not kidding here.
The thing about it is, you are going to make mistakes. You are going to forget to read labels or think something is ok only to realize it really, really wasn’t. Allergy parents might be nearly superheroes but even super heroes have off days or get tired.
We had one of those mistakes this past week. I bought some of Zach’s formula from an elemental formula exchange group, I never thought to ask if the cans were the US version or the Canadian/European version. I had not idea that there was a difference. There was, in fact, a BIG difference, the cans we got featuring French and English on the label, and contain soy and coconut oil as some of the first ingredients. Ugh. The US version does contain coconut derived products but not as the top ingredients and it does not contain any soy at all. (Even typing this I feel like banging my head against the wall for not reading the ingredient list).
For three days we fed Zach this formula. For 3 days his symptoms started to come back, sleep was starting to non existent again, rashes, reflux, spitting up so much that he drenched several of my shirts, mucus in his stool, crying, not wanting to be put down, etc…. all of it was happening. I was worried he was failing his formula or the water we had gotten. Crap, crap, crap. Hubby and I were feeling the strain of very little sleep and a very unhappy baby (plus a toddler also reacting to something different too). What I didn’t realize was that he was failing his formula, just not his regular formula.
I was reaching for a new can of formula when my mama gut kicked in and whispered that I should read the ingredients. I did and was horrified by seeing “soy” and “coconut” clearly written. I rushed to the pantry and got the “new and improved” labels. No soy, no obvious coconut. I went through all of our formula and sure enough, I had 4 cans (well, 3 full cans and one empty can) of the bad kind of formula. I spent $100 on those 4 cans and now they were completely useless. I felt like a bad parent for hurting my kid and for wasting our family’s money.
Thankfully, no lasting damage was done. Now, 24 hours later, Zach started sleeping again, spitting up less, being happy to lay on a blanket and “talk” to us. The guilt for hurting my little one is heavy but I am so grateful that it wasn’t worse and that we caught it after one can of this formula and didn’t miss it and continue to feed him the other 3 cans.
There are some days when by 10 am I am wishing I had a big bar of chocolate, a bath, and maybe a glass of wine to decompress from the few hours that I have already had to deal with trying to juggle two children. Or if not wine than a big glass of chocolate coconut milk!
The jump from one child to two has been more difficult than I anticipated to adjust to. Learning how to judge who’s needs are the most important at that particular moment. Trying to juggle more laundry, dishes, feeding schedules, lack of sleep, and maybe throw a shower in there and time to brush my teeth too (ah the luxuries of being clean!).
Then of course add all of the health stuff that I deal with day to day. Making sure that E gets all of her meds and supplements, making doctor appointment after appointment, calling insurance companies and fighting for things to be covered (formula, regular ped visits, upcoming hospital visits, etc), researching- oh so much researching, calling doctors offices and insurance to follow up about past calls, calling companies to find out about their processing practices or about some ingredient that could be derived from some trigger food, figuring out what food to trial next, and so much more.
Some days I look at the clock and wonder- how on earth am I going to handle the x number of hours until hubby gets home?! How am I going to handle not pulling my own hair out or screaming? How can I turn this day around and feel like a decent parent by the end of it?
I often feel guilty during these days, because a lot of the time my children are just being wonderfully typical children. They are needing things from me at the same time and when I can’t magically split myself in two and take care of them both, one or the other loses it and starts howling like the world is ending. Yes, it is true that mama isn’t as magical as you once thought, my young ones. I can’t sit on the couch and feed brother his bottle AND get what sister needs from the kitchen- RIGHT NOW!- at the same time. It isn’t physically possible…but does that make a difference to either wee one? Nope. They are tired or hungry or need a diaper change and of course that makes them want to cry. And sometimes they just want to play with me. Of course not in the same way or together- at least the two year old doesn’t want me to play with or even hold brother, when playing with her. Little brother could careless as long as someone is talking to him and making faces.
My guilt comes from feeling like I am losing my sanity and have a very short temper. Not because I can’t be in two places at once or because it isn’t perfectly typical for a 2.5 year old and a 3 month old to act in such a ways, because it is. It really, really is very typical. But because we have MUCH harder days. Days were screaming is from pain, not from frustration. Where throw up and diarrhea almost run down the walls (and sometimes literally do). Days where we have spent countless hours at the doctors office and tired small people just can’t handle anymore.
So days like today? When there is nothing really wrong but my nerves are fried and littles are just acting like littles? Shouldn’t I just be grateful for days like today? I should be and I am. But I am also sad and pissed off that I have to be grateful for crazy days that make other parents feel just as out of control. I want to be able to not feel guilty for having a hard time during a typical new to parenting two children hard day.
Update: and then sometimes you later learn that part of that hard day with the toddler was actually her having a reaction build up. Pooping twice during the day, flushing all day, behavioral swings, hives that weren’t very responsive to meds, new-to-her rash on her bum that is quite impressive and painful looking, over sensitive to stimuli, etc… Oh well, I guess things make a bit more sense now.
Just before bed the reaction started. Instead of laying on my lap, E wanted to lay on the floor. She started saying her legs hurt. Then, she asked to go lay down in our big bed and snuggle, but as she got up to go she was limping, and saying “ouch, ouch, ouch.” My heart sunk. I knew what this meant. A reaction. My mind raced what could she be reacting to this time? I reviewed all of the food she had eaten that day, all of the things she had done. Nothing. Nothing stood out as a known trigger. Then my mind whirled to could I do anything to stop this reaction? I quickly grabbed her cup and put in a dose of her antihistamines. “Drink down your juice, honey” I asked, probably with more than a hint of desperation in my voice. Sometimes, just sometimes, if we can get the dose of antihistamine in her a reaction will stop or be less severe.
She lay in bed she kept begging for an ice pack. The first few times I told her no, it was ok, just lay down and mama would rub her legs. But it wasn’t enough. She kept begging. I worried that an ice pack wouldn’t help and would actually throw her over the edge histamine wise, since she reacts to cold with hives. However, it is hard to say no to a toddler in pain, so I went and grabbed an ice pack and wrapped it up in a receiving blanket. She made a small sigh of relief when her legs hit it. A few minutes later she said, “I have poopies mommy,” my heart sank more. E only goes poop every 3 to 4 days normally and then has to concentrate very hard to get poop to come. It is a process and at the end of each time we cheer for her and the “poopies.” For her to go poop without any straining or even any indication that she had to go… it only cemented the fact that a reaction was happening. I picked her up and went and changed her. Then we went back to the ice pack. It still wasn’t enough to make her truly comfortable but after about 45 minutes of her moving her legs and feet back and forth on the ice pack, me rubbing her legs, cuddling her, giving her space- whatever she needed at that moment. She moved the ice pack away from her legs and clutched it to her chest. Sighed again and was asleep.
My brain wouldn’t let me go to sleep as I kept thinking, what changed did we have? What new food? What old food that we thought was safe but might not be safe anymore? I cooked with our cast iron pan tonight- maybe that was it? Finally, I dragged myself to sleep. Only to have Emma wake up crying out two hours later. She was nearly inconsolable, mumbling and not making sense. Last time this happened, I wrapped her feet in wet paper towels and that helped some. This time, I tried to find wash clothes but since I didn’t have any luck (dang giant pile of clean clothes yet to be sorted), I grabbed a small towel and another bigger towel. I soaked the small towel in cool water and squeezed out the excess. I rushed back to E’s bed with her crying and moaning, tossing and turning, trying to find a comfortable position. I put down the big dry towel and then grabbed both of E’s feet and legs and wrapped them in the damp towel. She sighed “that good, that good mama,” tears still making their way down her cheeks but no longer activity crying. After a minute or two I asked if she wanted to lay down. “Yes, yes. Ok” And she laid down her body finally releasing some of the tension. Within moments she had fallen back to sleep. I got another clean towel and placed it over her legs so the damp towel wouldn’t get her covers all wet and then covered her up.
A couple hours later she woke up moaning again, this time all I needed to do was go over and tell her I was there, and remove the sodden mess of towels.
That was a very mild reaction. Yet, it was exhausting none the less. I wasn’t sure if we were going to have a mild reaction or if it would escalate to something more. I am never sure.
The next day, we are often hit with the behavioral reaction, today is not any different – a hummingbird that loses her temper at the drop of the hat, that cries equally quickly, that runs into things, that hits or hurts others not realizing that she is hurting people, that runs around in circles laughing a sort of manic laugh, who’s eyes never quite seem like they can focus on anything, just to name a few of the things that happen. Again, that is the “good” version of behavioral reactions.
In my past few posts I have talked a lot about fear, the unknown, and just trying to survive. Because, in truth, I have been in survival mode and haven’t been able to look too far ahead. I am scared for my child, for both of my children. We are in uncharted waters for the majority of the medical community. Which makes it pretty much terrifying as a parent.
However, not all of it is bad or scary. In fact, a lot of it is good. I have two beautiful children, for whom I would move mountains and cross oceans. They are the biggest blessings God has ever given me. Their challenges, as much as they stretch me and make me think I am going to break, make me stronger. Make me feel deeper and want to help others in need. Make me research more now as a parent than I ever did when I was researching for my MA program. Each day, no matter how tired I am, I feel blessed that my children chose me as their mama.
So here are some of the good things:
Emma is speaking in full sentences and is now using adverbs. You might not always understand her because she often speaks at the speed of a hummingbird and her moods often change equally fast. She may be throwing a raging two year old temper tantrum one minute and the next be cuddled in my lap telling me how much she loves me. Sure, it might make a mama’s head spin but it also melts a mama’s heart when those little arms surround my neck and she kisses me on the cheek.
Her laugh is contagious and wonderful. She laughs with her whole body, head thrown back, eyes shut and mouth open in a glorious grin. Sometimes she will even stop, say, “I laughing” and then laugh some more.
She is completely unafraid of any animal out there. Which is a bit nerve wreaking for a mama, but she truly believes each and everyone of them are meant to be her best friend. It takes some convincing that animals, like humans, need their space and not everyone wants to make friends at that very second; but that we can enjoy their beauty from afar. We are still working on that lesson.
Zachary’s personality is just starting to emerge. Now that he isn’t in constant pain, he is such a sweet and happy boy. He spends most of his time awake doing his best to sit or stand and will smile and laugh along with anyone who is willing to say something silly or smile at him. He hates lying down and not being on the move. If we are driving and the car stops, he wants to go, go, go! And his cries will let you know how much he hates stopping. Even when he is in pain, he will look up at you and do his best to smile through his tears, showing you in his very special way, how much he loves you. He has his own special smile for his daddy, big sister, and mama. Letting us each know that he adores us.
He looks at me with such love on his little, wonderfully chubby, face. My heart soars each time he does that. He is just such an amazing little guy!
Being the parent of a special needs child is hard. Having two special children, well, I feel like I am being asked to stretch further than humanly possible. And I honestly don’t know how I haven’t snapped yet, (chocolate helps, a lot) but somehow make that stretch each day. I am certainly not a perfect parent, not even close. I have days when I go to bed feeling like I have failed them and that I was the crappiest parent ever. Other days are better and I go to bed feeling like not only I survived the day but we did some good that day. That we made good memories.
So here is a toast to the good memories and the smiles, and to the chocolate on the days that were harder!
Zachary’s trial of Neocate formula was going well. Things were looking better and he was acting like a “typical” baby. Laughing, babbling, and only crying when appropriate. I was beyond elated. I suddenly understood what it was like to have a “typical” baby.
The only symptom we were having issues with was constipation. Turns out that it is very important to put water in a bottle first and then put the formula powder in, otherwise you will have a concentrated version of the formula which will cause constipation, especially in a baby just transitioning from breastmilk to formula. I am not sure if this is true with any other formula but it is with Neocate.
We had a few great days. We even had the chance to go out to the local putt putt golf course and have some playtime as a family. Zach didn’t want to be in the carry but just wanted to be held and see what was happening, so I spent the time playing “soccer” putt putt. We laughed and I felt like this giant black cloud that had been surrounding us had lifted and the sun was finally starting to shine down.
And then everything changed again.
Zach started crying more. Then he started screaming again. He became paler and paler. Reflux came back with a vengeance. He was still constipated but when he finally went it was full of white mucus globs. He was puffy looking and looked dazed and out of it. I broke down and lost it. How could my baby be failing this formula? I had heard of it happening but it just couldn’t be happening to us! Where would be go from here?
In my panicked and emotionally broken and raw state, all I could do was imagine losing my baby. I wept for hours with my husband patting me on the back. I had reached my breaking point.
I searched my mind for anything that had changed…anything! The only thing I could think of was the water we were using. Water?! Could that possibly be the problem? I had, again, heard of children reacting to certain kinds of water (processing plants use a lot of corn products which can cause major issues for children who are extremely sensitive to corn), but could that really be it?
I went back to boiled water. I also decided that it was time to get some help. I planned a visit to see my family 3+ hours away. I needed to be around people during the day. I needed someone to help give me perspective and tell me- Yes, that is a typical baby reaction or No, that is not typical at all, we need to see a doctor ASAP.
A day on the boiled water and he started doing a bit better.
Two days on it and he had stopped screaming.
Three days on it and you couldn’t tell there had been anything wrong. He was a smiling and laughing baby again.
Water was our issue. Mineral water and spring water were BAD. Distilled water or boiled water was better. Reverse osmosis water? We need to give that one a trial.
On day two of the boiled water trial, drove down to see my family and made an appointment with the family practitioner who we adore down in that area. She is wonderful, supportive, and will listen. She won’t pull her punches though or sugar coat things, which is a good thing. But she will also be more than will to tell me if she doesn’t know something, which is a very good thing!
We sat in her office on some big couches, we were the last patients of the day so we had the place to ourselves and we talked. We talked for an hour and half. It was so nice to be validated as a parent. Told that I was doing an impossible job but that I was doing it and doing it well. Told that, No, I was obviously not crazy and that while she might not understand what was going on or even know how to help us there WAS something and something serious going on. I breathed with relief.
She checked Zach over and noticed that his pupils were not responding to light stimulus. Crap. At times his eyes had looked different to me but I had thought that it was just my imagination playing tricks and when your kid is screaming and pooping blood and mucus, well, his eyes are not something you focus on. She gave us the number to a pediatric ophthalmologist and said she hadn’t ever seen anything like that before when a child could obviously see.
Still, despite this new shock and possible visual issues, I was still relieved that my baby was starting to act happy again. That we weren’t failing formula. Thank God!!! The problem with his eyes? I have no idea what to think about that, so that is a problem for another day, when we can get in with the specialist.
When I got pregnant with Z, I knew that there was the possibility of allergies, of FPIES, like with Emma. I prayed they would be simpler, easier, one or two foods tops. Him being worse, well that couldn’t, wouldn’t happen. Not to us.
Something that never entered my mind was that I wouldn’t be able to breastfeed him. Nursing was one thing I was good at. I had an abundant supply, an oversupply actually, of milk. I made chunky babies from my boobs. It was like magic. It was my superpower! When sick, mama’s boob was a cure-all! Pinkeye – BAM gone! Diaper rash – Pow! Ear ache – Zap! Throwing up and can’t take anything else…There’s a boob for that! It was the one thing I could control and do for my child when everything else in the world was out of control with their allergies.
So when I nursed Zach for the last time in the doctors office yesterday, holding back tears (not well, mind you). I couldn’t believe we had gotten to this place. How could all of my work to keep him safe and fed and happy, be failing?! How could I have failed him? I had cut and cut and cut foods. I could cut more, I told myself. But in truth I couldn’t, my body and emotional state needed the possible quick fix and true help that formula could bring. I was a mess emotionally and was struggling with out having much of a support system. Zach’s health was failing, rapidly. Caring for one child with special needs was hard, caring for two? I was drowning. Formula was a life preserver to help me be the mama that I need to be for both my very special children and the possible healing that Zach so desperately needed. Already his doctor was referring us to the Children’s hospital, talking about seeing a team of specialists and getting scopes. If the formula helped, we could postpone that trip- for now at least.
This time around, at least I know it isn’t actually me he is allergic to. I didn’t have a doctor telling me that my baby was allergic to me. I had a doctor that had been fully on board with me trying to do an elimination diet. With trying holistic approaches and healing technics, who, in fact, encouraged it. But despite all that we tried and did, I still couldn’t get my milk to a place where it was healing him or even keeping him stable. It wasn’t me, but it was something in my milk that was making him sick. What that is I don’t know. Corn, beef, zucchini? The list is only comprised of a few more items and yet every diaper comes away positive for blood and in the last week visible blood stains the diapers. Mucus, more and more of it happens. Diarrhea. Reflux. Spitting up to full projectile vomiting. Cough and congestion that lingers from a cold. Something was seriously wrong with my baby. It couldn’t be FPIES, I told myself. It wasn’t this bad with Emma… thus it had to be something else. Maybe something easily fixed? But then story after story of other children who also had it this bad, and worse, flits through my mind. It could be FPIES.
My heart was, and is still in tatters. My breasts ache and every time he cries I have a let down. When he was crying today I almost unconsciously pulled out my breast and latched him on. I stopped myself before I actually did it but that is how intense, how primal, the urge is to nurse our young. I still have moments of bawling from grief so intense that I feel like I have lost a limb. That my heart is missing. That a part of me that was “mom”, or the mom I had imagined I would be, is gone.
I know that will change. I know that my bond with my littles will be special still. That my love for them won’t go away or even vaguely diminish. But this is a loss, plain and simple. It is also a healing, but for now I will honor that loss and know that I will be glad of the healing soon enough.
Parenting is all about sacrifice, for a “crunchy”, hippy mama that used to believe that “Breast Is Best,” this is a pretty big sacrifice. But I would give up more to keep my little man safe.
Plus, when your little smiles up at you when you are feeding him, be it at your breast or from a bottle, it is hard not to feel like you heart is lifting out of darkness and know that everything will be, has to be, ok; because how can a smile that wonderful be anything but a good thing?