Again, going back in time to earlier this week, when we met with the GI doctor and recieved a HUGE diagnosis:
Dairy. Eggs. Tomato.
Dairy. Eggs. Tomato. We found out today that Max is allergic to dairy, eggs, and tomato.
Max has projectile vomited HUNDREDS of times. Since he was days old. He had trouble nursing, trouble with formula, lots of spitting up, and lots of vomiting. And his pediatrician took one look at his smiley sweet face and reassured us “He’ll be fine. I mean, he’s not a ‘failure-to-thrive’ baby.” And when we begged her to help us figure out why he throws up every time he cries, and sometimes for no apparent reason at all, why he doesn’t sleep, why he has eczema, why his eyes were swollen and red….she suggested “You might want to try some soothing music and maybe a pacifier at night?”
So we had to figure it out on our own. Night after night we held our sweet little boy over the sink as his tears mixed with the food from hours before as he threw it up. Not even digested. And he choked and gagged and begged us with his eyes to FIX IT. Day after day, as he would wake up screaming from a nap that was about an hour too short, Sean would say to me “This is NOT normal”, and I would second guess myself because of course, I’m a first-time mom and maybe I just didn’t know how to get my kid to sleep/eat/digest food???!! And for the most part, Max has been a happy, charming, healthy little boy. Who is developing ahead of schedule, interacting wonderfully with the world around him, and shining his bright little personality on anyone who looks at him for even a split second.
Of course, I figured that I must just be a terrible mom then. I drive my kid around to get him to go to sleep. I don’t let him cry for longer than 60 seconds because he’ll vomit. I rarely leave him with a sitter because they wouldn’t possibly know how to soothe him, feed him, or put him to sleep. The voices that chastised us were SO loud. If only you had let him cry it out. If only you had left him with a sitter sooner. If only you had nursed him for longer. If only you had given him a chiropractic adjustment and burned sage by his crib and tried fish oil supplements and then co-slept and maybe tried a sippy cup and you know you should really play some soothing music at bedtime. Then, the whispers of the “tsk, tsk” mommies who didn’t really know us but would overhear us talking in playgroup, who were sure that this was such a nightmare for us because of something WE did, some catastrophic failure that would have been alleviated if we had only followed Dr. Spock/Weissbluth/blah blah blah because of course if you can just blame us then it could never possibly happen to YOU. Like the “Sleep Expert” who taught a class that I actually paid money to go to, who said “Look at him, he’s EXHAUSTED. You have to learn to let him cry.” I cried big fat tears in the back of that swanky baby clothes store where she had her “professional” seminar.
Finally, after a Candyland cast of characters that stretched a mile long, we finally have an answer. 2 Pediatricians, an opthamologist, a sensory specialist, two feeding specialists, an allergist (who missed it)and 2 GI doctors later (the first one missed it), we have an answer.
Last week the GI doctor at Stanford, who was the first one to take us seriously, found some major swelling of the lymph nodes in Max’s belly (the Duodenal Bulb). Dr. C, whose response to our initial visit was to ask “So what’s been done about all of this up until now?”, and then we had to say “Um, nothing. Because our pediatrician told us that Max’s throwing up was just “a laundry issue” since he was gaining weight.” Dr. C, whose eyes grew big and concerned when we described Max’s symptoms, suggested that we put him under anesthesia and put a breathing tube in while he did an Upper Endoscopy. And extensive lab work. And allergy testing. And biopsies of Max’s insides. He was that concerned. And he kept repeating to us “You’re right. This is NOT normal”.
And when all of my “Mommy instincts” were screaming that SOMETHING IS WRONG with this beautiful baby, and all of our lives have been turned upside down for 17 months by not knowing how to help Max feel better, I find that while I am SO relieved to have an answer I am also SO angry that it has taken this long.
I’m angry that we let Max down. I’m angry that there is no way for parents to know what direction to go in unless they have skilled medical professionals helping them, and that no one we’ve encountered until now has been skilled. I’m sad that he will have to re-learn how to fall asleep, stay asleep, and how to eat, because it’s been such a struggle up to now.
We will all have to re-learn how to eat. Dairy and eggs are in EVERYTHING. Dr. C had choreographed the sharing of these results like it was a death sentence. He spent long minutes explaining that the biopsy results were normal. Max was a little bit anemic, but no big deal. And then he said “Drum Roll, please” (no kidding), and as he was showing me the list that said Dairy, Eggs, Tomato, the nutritionist made a grand entrance and he started soothing me by telling me that she (along with a pediatric allergist) would be walking us through what life would be like.
Thank god that Scott was there to watch Max while I tried to soak everything in. I opened up the food diary that I had been keeping for Max, and didn’t know whether to laugh or cry as I shared it with the nutritionist. Cheese, cream cheese, yogurt, scrambled eggs with cheese, egg noodles with tomato sauce, quiche with cheese…and of course, 24 ounces of dairy based formula EVERY SINGLE DAY.
Dairy, eggs, tomato. Now we know. Thank god we know.
Max, I am SO SO sorry that we didn’t know sooner. I am SO sorry that you had to be hurting for this long. We will do everything in our power to help heal your belly. We will learn a new way to eat. We will take care of you, and make sure that you can still enjoy the deliciousness of life. We will search for every bit of information that we can so that all of this makes sense, and we will be your chefs, your soldiers, and your protectors….helping you to grow and blossom, eggs, dairy, and tomatoes be damned.