Just before bed the reaction started. Instead of laying on my lap, Little Cub 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. Little Cub 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 Little Cub 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 Little Cub’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 her 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.
Baby Bear’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. Baby Bear 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.
Baby Bear 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 Baby Bear 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.
Update: by the time we saw the specialist, Baby Bear's eyes were back to be responsive. The only thing we can think of is that it was yet another kind of reaction for him. I guess we will have to wait and see how he reacts in the future.
When I got pregnant with Baby Bear, I knew that there was the possibility of allergies, of FPIES, like with Little Cub. 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 Baby Bear 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. Baby Bear’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 Baby Bear 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 Little Cub… 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?
Baby Bear has been having increasingly worse mucus and blood in his diapers over the past two weeks. The “seediness” of his diapers is decreasing and more diarrhea like consistency is increasing. In the past few days he has been getting increasingly more fussy and uncomfortable. Yesterday, he allowed me to put him down for one nap, otherwise he would scream his small little head off, I held him all day. Even then he fussed and nursed continually. This wasn’t working. Not only am I touched out and stressed but poor Little Cub is reacting to Mama being grumpy, not being able to play with her, and having to deal with a screaming brother all day.
People keep telling me that everything I am seeing can be normal, that I am worried about nothing or to not stress about things yet, and to give it more time. I remember those same statements being said with Little Cub too. And they are true. Yes, mucus can be totally normal (or on a range of normal) for babies. Blood can be normal too. Fussing can and is normal. Eyes swelling up and congestion- all normal. But when you combine them all together? Not so normal.
It is possible that I am reliving more of the trauma that we went through with Little Cub? Yes. Perhaps I am seeing things where there is nothing wrong. It is possible. But my mama gut is telling me that isn’t the case.
The time has come to try an elimination diet. Time to figure out what was making him sick. Today, I start that diet. Ugh.
Last night I ate the last of my Enjoy Life chocolate chip cookies (top 8 free), I had chips, I drank chocolate coconut milk. I basically enjoyed a few things that I won’t be able to have for…well, I don’t know how long. It might be a week or it might be several years depending on how long I nurse this little man. It felt like my last meal.
I dread this diet. Being hungry and wanting to eat food you personally can eat but that makes your little one sick is just not fun. It is a pretty big sacrifice. But isn’t that what parenting is all about? Sacrifice, pain, hardship all mixed in with brilliant, priceless, wonderful times that fill your heart with so much love you had no idea that a human body could love so much.
So here’s to grass-fed beef, eggs, olive oil, salt, potatoes, zucchini, chard, a little bit of corn, and some yet undecided fruit or two, which will be my diet for the next week or two. Then if things are looking better I will start adding food back in. If things are worse, then I will switch out some items and try again.
I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.