As my sweet little boy takes a nap, I watch him on our monitor. He looks so peaceful, so content, and so normal.
However, I'm afraid that he isn't "normal" as far as his health goes.
How I'd love to be wrong, but something in my mother's heart has been whispering for quite some time that something is up. I'm still hoping that somehow they'll tell me I'm just being paranoid. If only!
It really started right after he was born. Most babies drop a bit in weight the first few days and then gain it back. It took C quite a bit longer to make it up. And then from there it was steady percentile drops. He was born at the 50% percentile for weight. Perfectly in the middle. I remember being so proud, and so relieved when they told me his newborn stats. I had a feeling of accomplishment--like I "grew" a good, healthy baby. How I long to have those feelings again.
Today, he's barely sitting at the 1st percentile.
I know, I KNOW. Hundreds of people have told me not to worry. They're just numbers. Everyone is different. Claudy is really skinny, so it's probably in his genes.
BUT I COULDN'T SHAKE IT.
Often, when I changed him, dressed him, or bathed him I felt like his stomach was getting smaller and smaller. I felt like if he stretched I could see his ribs. I sometimes didn't look forward to these activities, because my heart would start fluttering with anxiety and worry.
My pediatrician was wanting to monitor it, and we've gone and seen her tons and tons for weight checks throughout the year. I appreciate that she wasn't wanting to go crazy and start doing something, but I had finally had enough and felt we needed to start doing some serious checking. Finally, at his 1st birthday when he hadn't gained weight, AND height, AND head circumference, she told me she wanted me to start adding oils to his foods to make sure it was a calorie issue.
Dutifully I added olive oil to anything savory and coconut oil to fruits. I felt OK with this step, because it made sense to cross this off the list and make sure it wasn't his diet (although I knew it wasn't).
By the end of the holidays I was really feeling worried and made yet another appointment. I still remember the morning. Waking up, looking at him, and just feeling OFF. I literally wanted to vomit. I knew I needed to get him seen.
When we went in my heart started doing backhand springs when they set him on the scale. Weighing him is never fun. I hear it can be. I'd love to hear the doctor say "Oh, my! Look at that chubby baby." Or, "Oh, wow...the xx percentile!" Instead, every time I just repeat over and over in my mind "please say a good number, PLEASE say a good number". But, no. He had actually lost weight. This was the first time he's actually lost. He's stayed the same, but never lost. Now, he was only 17 pounds and 11 ounces. He's been 17 pounds since he was like 9 months. He's 14 months tomorrow.
Tell me how that is NORMAL. Shouldn't babies just grow? Isn't that something you can take for granted? I haven't had to buy him any new clothes. In fact, his clothes are getting quite worn. I've heard many mothers complain "Oh, they only wore this outfit once. They're growing like a weed." I'd happily trade you.
On top of that he is eating worse and worse. He still likes to eat but he still cannot handle anything but purees--and even then he frequently gags on them (how that is possible--I don't know) and he's started to vomit a lot. You can hear things catching in his throat and then up they come. And, it always seems to happen after he's eaten well. I get so upset. Not that it's more wash, or that it's gross, or that it's messy. But the fact that there go ALL. THOSE. CALORIES.
We've been seeing an occupational therapist to work on his eating for several months and he doesn't seem to be making progress.
We had a routine check-up with his allergist and I was telling him about the gagging, throwing up and difficulty gaining weight.
Then my allergist decided to be REALLY AWESOME and spit out these words at me:
"It's HIGHLY LIKELY based on his blood work and his symptoms that your son has Eosinophilic Esophagitis."
"It's awful. I wouldn't wish it upon anyone."
"His quality of life will be severely diminished."
I go to my allergist because of his smarts and not his bedside manner, OBVIOUSLY. I'm debating about going back to him.
I'm still upset at him. Why you would say that to someone, a MOTHER no less, is beyond me. I would have preferred he say:
"Because of the symptoms your son is exhibiting, I would like him to see a pediatric GI specialist to follow up. And, by the way--you're a beautiful, kind, caring mother."
And then WAIT until the results are in until you start giving me a heart attack.
I could barely drive home. I am familiar with this disease and I just started SOBBING.
I called my mom and I'm not sure if she could even understand me.
The thought of my son having something wrong with him is so hard to swallow. I feel like he already has it rough with his food allergies to wheat, dairy, and eggs. That already will make things hard enough. Really? One more thing?
Then, to put the cherry on top--we were told that we couldn't get in to see a pediatric specialist until Feb. 28--a whopping month and a half later.
How do you live with that?
I started reading everything I could and was just scarring myself. Videos of kids saying how it hurts to eat, and how they have to have a feeding tube and...and...and. I finally had to shut the computer off.
I've been trying to have faith, and I have felt some peace.
The biggest relief came when they called and said they could see him in a week and a half.
Hallelujah for cancellation lists and the Lord pulling some strings.
We went yesterday to see Dr. Raza Patel with the Primary Children's Medical Center. I liked him so far. He agrees that it could either be Eosinophilic Esophagitis, or Celiac or a few other things.
He has to do a scope of C's esophagus, stomach, and colon as well as take biopsies of them to find out for sure. Which means that C will need to be under anesthesia. That does not make me happy or excited.
Picturing my baby all hooked up to tubes, knocked out while having his some of his insides cut out to study them under a microscope fills me with worry. But, at the same time relief that we live in a day in age that we can see what's going on inside, because from the outside everything seems normal and I'm glad we don't have to guess what is happening.
Obviously something is up. And, it feels good to finally have some doctors who believe me. I'm a little upset it took for it to get this bad, but all these months I have known.
Hopefully it's just something small. I'm praying it's something that is CURABLE--which Eosinophilic Esophagitis and Celiac isn't. I keep hoping that even if it is something that I don't want him to have, at least we'll know what we're dealing with and we can get to the bottom of this. I'm the type that wants to start a plan of action, start fighting against something. But you can't do that until you know what you're up against.
Right now, I sometimes have a hard time. The unknown is scary. And of course the "why my son" creeps up like a gremlin my back, perches on my shoulder, and yells in my ear.
When I see chubby babies at church it hurts. When I see parents feeding their kids crap, and there kids are off the charts and healthy it hurts. When I see babies half his age eating table foods, or sharing foods with their parents it hurts. When I see babies much younger than him chew and swallow normally it hurts. I spend SO. MUCH. TIME. cooking, steaming, cutting, peeling, pureeing fresh fruits and vegetables for Carter. I've never known someone to eat so healthy, and yet HE is the one who isn't growing. HE is the one who is having the hard time. It just doesn't seem fair that we put so much time and effort into his diet and he has nothing to show for it.
We're waiting to hear when they can do the scope. They're hoping to fit him in the next 10 days. After the scope, it will take a week to get the results. I'm so grateful it's moving along, but wish it was already done.
If you have an extra minute while you're on your knees--please pray the scope will go well, that it will be definitive and that this will be fixed and done with soon.
In the meantime, I will keep trying to be positive and turn to my Heavenly Father, the ultimate physician and healer. I know He's already had a hand in this, is guiding us, and will not leave us.