The Roller Coaster We're On

A week ago today was my son's 18 month well check-up at the pediatrician.

When it was his turn to be seen, we took him to the exam room, undressed him down to his diaper, and, despite his many protests put him up on the scale. Red-faced and screaming, he did everything in his power to jump back off into my arms. The nurse turned to me, and, seeing my pensive face, assured me that he would be fine.

She didn't realize that I wasn't worried about his desperate attempts to get off that scale. Instead I was focused intently on the long black bar of numbers that shows how much he weighs. As she moved the weight down the scale, I prayed for a good number.

22 pounds, 10 ounces.  31 and a half inches long. Around the 30th percentile for both height and weight.  I felt tears of happiness and relief spring to my eyes.

You might think it's funny. A mom crying in the pediatrician's office over the fact that her son is now in the 30th percentile.

You'd understand if you knew just how hard we've fought for every ounce of that 30th percentile.

Up to this point, I haven't shared the struggle we've journeyed through the last six months. I think deep down I was really afraid of how it would turn out. I was afraid of dealing with a barrage of advice that well meaning people would give me, not knowing that I was already overwhelmed with advice from doctors and specialists. I was afraid that we wouldn't find an answer.

Beginning around my son's six month check-up, the pediatrician started noticing that, instead of progressing along his established growth curve, he had started a slow decline. Not wanting to overreact, she said they'd keep an eye on it and that it was probably just a lull before the next growth spurt. Being that he is my second child, and I assumed things would work out just fine.  They always had with my first baby, so I didn't think too much of it.

Then we had his nine month appointment. His weight, which had always been around the 50th percentile, had dropped to around the 20th. His height, which had been closer to the 70th, had dropped below the 50th. He had barely grown in 3 months time, and hadn't gained any weight.

I could tell that the pediatrician was concerned, but I could also tell she didn't want to alarm me.  She encouraged me to try and feed him as much food as possible throughout the day, so that she could determine whether he just needed more calories, or if something else was going on inside him.

I remember going home in tears. I was worried. I knew it wasn't normal for a baby not to grow at all in three months. I felt sick to my stomach, feeling like somehow it was my fault. Was I not paying enough attention to how much food I was offering? Was I too distracted by my three year old to take good enough care of my baby? Was something much worse wrong with him?

It's crazy how when you become a mom, suddenly you take the weight of the world on your shoulders. And it's crazy how much guilt I can pile on myself even when I have no control over the situation.

For the next three months, my entire life revolved around feeding Josh. Morning, noon, and night I tried finding ways to stuff him as full as he would let me. Rice cereal mixed with Gerber food in the early morning, followed by a snack two hours later. Then more cereal and meat at lunch. Then a full second lunch when he woke up from his nap. Then another snack, and then as much dinner as I could convince him to swallow. Then we'd wake up the next morning, and repeat.

As worried as I was that somehow this was my fault, friends and family commented on what a good eater he was. No one could deny that Josh could pack away even more food than his three year old sister. I crossed my fingers and toes that the next check-up would be better.

By this point, I had begun noticing that Josh's diapers weren't normal. To be blunt, he had a lot of diarrhea. It added to my worry and I suspected it was more than just not enough calories. 

We went in for the 12 month check-up, and I don't even remember what they told me he weighed. I just remember that, unlike the previous appointments, they didn't give me the little paper that told me what percentile he was in. It's never good when they don't give you that paper. Instead, we were sent home with a lab script. I took him the next day to have seven vials of blood drawn, and then we waited.

A few days later, I got the call. The doctor, speaking gently, told me that we needed to make an appointment with a children's hospital to see a specialist. The truth was, Joshua hadn't really grown since his last appointment, and now was only in the 2nd percentile for weight. The lab work was inconclusive, and needed the opinion of a pediatric GI specialist.

I felt like I had failed him. And I didn't know what was wrong. I was scared for my baby.

We immediately made an appointment with A.I. Dupont Children's Hospital. We met with the doctor, a man with kind eyes and a warm smile. He spent a lot of time with us, going over each and every test result, reassuring us that they would do everything in their power to find out why my baby had stopped growing. He talked us through the possibility of Celiac disease, food allergies, parasites, enzyme deficiencies, even the possibility of cystic fibrosis. At that point, the tests didn't show much of anything. All we knew was that he wasn't growing like he should be.

The diagnosis that day was "failure to thrive."

When he said those words, this hard lump formed in my throat. Failure to thrive. It might has well have been a sucker punch right to my gut. As a mom, literally, my life's work is spent helping my children to thrive. If I could summarize my one heart's desire it would be that my children grow and thrive. It's a cold medical term that really just means "we don't know what's wrong." To me, it felt like I had failed my son.

I walked away feeling a jumble of emotions. Ben tried to remind me of all the positive things the doctor had said. But, somehow I  only remembered the negatives.

The next few weeks were spent meeting with a nutritionist, keeping a food diary of everything I fed him all day long. I remember the nurse telling me, "Don't feel like you have to fill up the page, some parents think they have to add more than they really fed their child. Don't worry. We know you're feeding him."

But I still felt like I was on trial. Like they were looking at me under a microscope. I felt like they were thinking, "What is she feeding him? Is it healthy? Is it enough? Is she really taking good care of him? Is she a good mom?"

After I completed the food diary we met with the nutritionist. Her eyes grew wide at how much I had written down. She asked, "Wow! Does he really eat all of this?"

"Yes!" I replied. "He eats all the time! I don't understand why it's not translating to him getting bigger."

She sent us home with instructions to try and maximize his calories at every meal. What that meant  was cooking everything in butter, heavy cream, and adding oil wherever I could. It went against every "healthy" instinct I have in me, but I forged ahead, trying to fatten him up. We also had to start giving him Pediasure several times a day. The stuff stinks like chalk and the list of ingredients is anything but organic... but I had to do it to help my baby.

We embarked on a round of blood tests, stool tests, a test for cystic fibrosis.  I was a certified wreck. I remember the morning the doctor called after the cystic fibrosis test to tell me Josh had passed the test with flying colors and did not have CF. I let out a breath that I realized I had been holding for days. I was so relieved, but desperate for an answer. None of the blood or stool tests showed much of anything either.

Except for one test.  The test showed he had extra sugar that he wasn't processing. It could be any type of sugar (lactose, sucrose, etc), that was not being absorbed properly. The doctor told us to try a lactose-free diet for a couple weeks to see if that helped. I prayed with all my might that it would help. It would be such an easy fix. Two weeks in to the lactose free diet, and we didn't see much change in the diaper department. I remember we went out for ice cream as a family at the end of the two weeks. Since Josh was still having some messy diapers despite the change, I let him indulge in the ice cream. Ben's mom took him home that night. Unfortunately, his body reacted pretty strongly to the ice cream and he lost it all at Grandma's. We went right back to avoiding lactose, and slowly his diapers began to improve and look more normal. Never did I think I would have to pay so much attention or have so much emotion over someone else's poop!

For a couple of months Josh began improving. His weight and height started to slowly climb back up the charts. I became the lactose police, making sure nothing passed his lips that had even a trace of lactose. The doctor was encouraged by his progress and we were allowed to space out our appointments to every four months.

Then, about a month ago, the diapers started getting sporadic again. I hoped it was a fluke, or that someone had fed him lactose when I wasn't looking, or maybe he had a virus. I was on the fence about whether to let the GI doctor know. We went to the 18 month pediatrician appointment and heard the fantastic news about his weight gain. I was so relieved, and yet still holding my breath.

After his appointment he had 7 straight days of diarrhea. The poor boy.

I'm so relieved he is growing again. But I'm worried about what is wrong with him.

I spoke with his GI doctor tonight. We're headed for another round of tests, looking for allergies, viruses, bacteria. Anything that will give us a clue. I'm so incredibly grateful for the care that AI DuPont has provided to us. I had a full length conversation with the doctor over the phone and did not have to even drive in for an appointment. His goal is to do every non-invasive test available before resorting to an endoscopy. The relief that gives me is indescribable. He reassured me that the most important thing is that my Joshua is growing again, and growing at a fantastic rate. He also reassured me that he knows I'm doing everything I possibly can to help Josh.

God knew I needed to hear that from him tonight. That I'm a good mom to my baby and that despite the setback with these diapers, my little boy is growing again. It doesn't drown out the sound of my worry, but it does give me reassurance.

It takes a lot for me to put this out there. I still don't have the answers and I still don't know the end of the story.

But I decided that I've been carrying this pretty close to the vest for six months, and I could use some prayer. 

Pray that we can find a definitive answer. Pray that we can get off this roller coaster. Pray that people don't say insensitive things to me because my mama heart just can't take it right now.


And pray that my little boy keeps growing and thriving.