I read a wonderful post early this morning and it has haunted me, in the best possible way, all day long. I kept coming back to THIS post, which has been in my drafts folder since I started My Little Poppies. I’ve never been happy with it and I don’t think I ever will be. The truth is, the emotions are still so raw all these years later. I decided to dust it off and throw it out into the ether because someone out there is going through this right now and she’s not going to care about what the post is lacking, she is going to know she’s not alone.
And that’s good enough for me.
My oldest son was a really hard baby.
An incredibly, unbelievably, heart-wrenchingly hard baby.
But, of course, I couldn’t see any of that at the time. It was my first experience as a mother and I had no frame of reference. I thought it was normal.
The sleepless nights.
He cried all the time. I could not put him down. Ever.
Bounce, shush, bounce, shush, bounce, talk, talk, talk, talk.
I have never talked so much in my life. And it helped, but it never helped enough. If I’d stop, if I’d slow down on any of it, he’d up the ante.
Don’t get me started on car rides. I had friends who would drive around the block to help their babies fall asleep. Mine would see the car and arch his back, already screaming. It was a fight to strap him in even as an infant.
Do you know that desperate, choking, gasping cry that makes you sick to your stomach?
He did that the entire time we were in the car.
I remember we went to the Cape his first 4th of July. We convinced ourselves that the three-hour drive would be worth it. As we sat in traffic that sunny day, I sat in the backseat, next to our son, bawling alongside him.
Please stop. Please, please, please stop. Oh my God, why aren’t we moving? I can’t do this. Can’t think. Can’t think.
My husband, our driver, tried to distract me but there is no way to distract a mother from that type of cry.
I dreaded going to the bathroom, showering, running a quick errand.
I dreaded the nights. If we were lucky, he would sleep from 6:00 until 8 or 8:30 pm. And then he was up hourly, and then every twenty minutes, and then he was just… up.
I remember people telling me that it would get easier. I waited and it didn’t.
I had friends who had babies that cried, but they never cried this much. My friends could put their babies down, even if only for a little while.
That’s when I started taking note of the differences. Their babies slept. Mine did not. Their babies seemed calm. Mine did not.Their babies seemed happy. Mine did not.
I started to realize that my baby was not typical. This did not seem like a normal experience.
Early on, he was diagnosed with silent reflux. He was put on medication. I told myself it would help. I prayed that it would help.
Had this been my second baby, I would have known that things were still not okay. I would have known that he needed a higher dose or a different medicine.
For a time, I believed it was helping. I needed to believe it was working.
I put on a smile and powered through. I have wanted to be a mother since I was a little girl and, come hell or high water, I was determined to love it. Fake it ’til you make it and all that jazz.
But things kept spiraling downward, especially when it came to the growth chart.
Feeling Like a Failure [Failure to Thrive]
At first, our pediatrician would just note the changes.
At the last appointment, his weight was at the 75th percentile. Now he is at the 65th. It’s just something to keep an eye on. He’s probably just finding his curve.
It’s funny to think that he was ever at the 75th percentile but he was. I remember it. I have it documented. I have every appointment for those first three years documented. When your first child is on a dizzying spiral down that growth chart, you remember where he started.
Eventually, when my son was in the 4-month range, it became more than just something to keep an eye on. Our pediatrician upped our appointments so that we had regular weight checks. He was empathetic to our situation, but he explained that we would need to see specialists if the pattern continued, just to be sure all was well.
We focused all our efforts on feedings in order to get that weight up. I couldn’t understand why this was happening. He nursed frequently. He never threw up. He was distracted, though. Any noise, any movement, and he’d pop off wide-eyed and stare at me. It was as if he was asking, “What was that?” (Of course, knowing what we know now about this little guy, that’s exactly what he was doing.)
My husband and I had a rule: NO talking. If I was nursing, no talking. If he heard my husband, forget it. Our best nursing sessions were just before bed when it was completely dark and quiet.
I’d get to every weight check a little early so that I’d have time to nurse him in the parking lot before heading in.
Please don’t pee, please don’t poop. Hang tight, hang tight.
When it came time to weigh him, my stomach would be in a knot. If I removed his diaper and it wasn’t bone dry, I felt a loss. As the nurse fiddled with the scale, I’d utter a silent prayer.
Please gain please gain please gain please gain.
Over time, the prayer changed.
Please don’t lose. Don’t lose. Don’t lose.
The scale was never kind to us.
At one appointment, just before my son turned 6-months, our beloved pediatrician informed us that our son was teetering at the edge of the growth chart.
If his weight isn’t up by our next appointment, I’m going to have to refer you to MGH for Failure to Thrive.
I must have flinched when he said the words because he made a comment about how the term was a terrible one.
His eyes were regretful.
I held it together in the office, just barely. Once in the car, I cried the whole way home. Just like my baby.
This wasn’t my first experience with Failure to Thrive. As a school psychologist, I had worked with many children who carried the diagnosis. These children were abused, severely neglected, medically complicated, or significantly disabled. How did we fit into that picture?
We took feedings to a new level. I moved a chair into our closet. It was the darkest place I could find in our house. I nursed him all the time, in that closet. I started doing dream feeds, waking him on the rare moments when he was actually asleep to squeeze in more calories.
Meanwhile, our next appointment loomed on my calendar. It felt suffocating, there wasn’t enough time.
I couldn’t FAIL this.
Failure to Thrive is a gut-wrenching term and one that makes you feel like a failure as a mother.
At our six month appointment, we were no longer on the growth chart at all. When our pediatrician handed us the referrals for GI, nutrition, and endocrinology, for the first time in my life I felt like a failure.
I felt that I was failing at the one thing I had always dreamed of doing, at the one thing I assumed I’d be naturally good at: motherhood. I couldn’t hide the tears this time. He assured me it was just a precaution. My son was developing well otherwise, my husband had been small, we were just being cautious. We wouldn’t want to miss anything. I nodded through my tears, embarrassed and sad.
On the drive home, while my baby wailed, I wondered: How could I fail at feeding my child? Feeding is the most basic of needs. How did I mess this one up?
Once home, with referral slips in hand, I let myself have a good, hard, long, ugly cry. And then I took a shower and got on the internet. If there was one thing I knew how to do, it was to be a student. I ordered books. I read every article I could get my hands on.
I was determined to be the fastest-resolved FTT case the folks over at MGH had ever seen.
The appointments and testing started right away. He was tested for everything, from allergies to celiac to Cystic Fibrosis. We saw more specialists in those first FTT months than I care to remember. I spent hours in the car, stuck in traffic in and around Boston, with a wailing baby.
How many calories do you burn, crying like that?
We saw a nutritionist at MGH who I began to despise with a fiery passion. She required us to keep a food journal. We also needed to chart dirty diapers. We did this religiously, and we asked anyone who cared for him to do the same.
I was still working at the time. I had a new job and I was not making a great impression with all of these appointments and sick days (because when you take a teeny tiny little peanut to a million doctors’ offices, they get sick all the time). On my drive home from work each day, I would think about calories in and calories out. What would the log say today?
You gave him Cheerios? I don’t mean to sound crazy, but could you please not give him those anymore? They don’t have enough calories. Our nutritionist said to avoid them.
I sounded like a crazed new mom.
And I guess, in retrospect, I was a crazed new mom, made crazier by the specialists at MGH.
I hated our GI/Nutrition appointments. I’d drive all the way to MGH Waltham with my screaming baby and then sit in a waiting room forever. Once our name was called, we would need to weigh in. I would need to strip my already-angry son naked and put him on the scale. At this point in his young life, scales made him angrier. They made me angry, too.
Once we had finished the weigh-in battle, which of course we had lost, it was time to sit down with the nutritionist. She’d flip through my food journal, calculator in hand, tallying calories in as if they were points earned.
We never had enough points so she would lecture me. She would repeat what she had said four weeks prior as if I hadn’t clung to every word of it the first time around. As if I was ignoring her advice. As if I didn’t understand that this was serious. She’d give me another handout filled with helpful suggestions, all of which we had already tried.
I wanted to scream at her, to shake her, to drag her home with us and have her try to get calories into this child.
Everything got worse as my son got older because he never stopped moving. I’d watch him climb, run, jump, and tantrum and all I would see was calories expended. It was impossible to keep him calm. And he was always too busy to eat. And, believe me, I tried all the tricks in all the books.
I need to remind you that watermelon is an empty calorie. Do not give him watermelon.
The nutritionist said this as she pointed to a day that I remembered well. We had been at the beach all day and, but for a few Town House crackers (one gram of fat and 18 calories per cracker), he had eaten nothing. We had, of course, offered him everything. Everyone we were with offered him what they had, too. People were always trying to get our son to eat. They were well aware of how our life revolved around calories in and calories out.
But did you look at that entry? Did you see all the attempts and refusals? It was 4:00 pm and watermelon was the only thing he would eat. It was 80 degrees. I was happy he ate something.
She’d write a note and pop some numbers into her godforsaken calculator. No smile, no reassuring comment, no acknowledgment that this was hard.
I wanted to pummel her and her calculator.
And let’s not even get started on the renowned GI specialist with the non-existent bedside manner. We saw this man every four weeks for far too long and he never remembered:
- My name
- My son’s name
- What tests we had taken recently
- Which formula we were currently on
- Which weight gainer powder we were currently on
And, because he was a renowned GI specialist at MGH, he was always running behind and rushing. He’d start our appointments already behind, rifling through our file, searching for the information he needed.
Hello Mrs…….. Curley. How is……… Leo today?
No eye contact, he was already shuffling for the next piece… which he also didn’t have.
So we tried the…..
I would interject, frustrated:
We tried the Alimentum. It made him throw up and then refuse all liquids for 48 hours. I called the office about it.
I wanted to pummel him, too. I didn’t understand why he couldn’t just take a minute outside our door to review our file. It was maddening, insulting.
But the most annoying part of the appointment was the end. It was at this point that I would inquire, every single visit, if it was possible that all of this was somehow related to silent reflux. I would explain how he still cried a lot. Maybe eating was painful? Perhaps his baseline was belly pain? Could it be related?
Without fail, he would tell me that it was impossible for it to present this significantly. And then, as a way to wrap up the appointment, he would take note of my child as if for the first time. My son, who had now been in the car, in the waiting room, and in two appointments, would be climbing the walls at this point. He opened cabinets and drawers, clung from cabinet handles, pulled on cords.
Wow. Is he always this active?
He asked this question every single visit. And he smiled when he said it. I had all I could do not to seethe, “Put it in your file!”
And so the appointments with GI and Nutrition continued. So, too, did the weigh-ins, high-calorie formula, weight-gaining powders, and tips and tricks. We put oil, butter, cream, Duocal in everything. We recorded it all. Calories in and calories out. And still he did not gain.
I worried about what we were creating. Would he ever emerge from FTT and eat normally? Or were we creating irreversible and unhealthy habits? Would we ever have an answer?
In August of 2009, when my son was just shy of 1.5 and I was 7-months pregnant with our daughter, the GI specialist recommended an endoscopy and abdominal ultrasound to try to get at the cause of our continuing issues. I had to be in Newton, MA at 6:30 am. My son screamed the entire drive there. He cried while waiting for his procedure… until the anesthesiologist appeared. The anesthesiologist that morning was fantastic with my son. He had him laughing the entire time. He explained the procedure to me and said that, typically, moms come into the room and sing to their child until the anesthesia kicks in. He explained what this would look like… and then he noticed my belly.
You’re pregnant! Congratulations! I’m just going to need you to check with Dr. [GI Who Shall Remain Nameless] to see if it is safe for you to be in there since you are so far along.
Then he gave my son a balloon glove that looked like a rooster and took off with a wave and a cock-a-doodle-doo. When our GI doctor appeared, I told him that the anesthesiologist had asked me to check with him about entering the room before the procedure. He seemed perplexed and asked, “Why wouldn’t it be okay?” and when I told him he blinked and asked, “You’re pregnant?”
Folks, I had been seeing this fellow monthly since my son was 6-months-old and I was noticeably pregnant. Once again, I wanted to pummel him. And not for the last time.
They ended up letting me in the room with my son, where I sang You Are My Sunshine to him, along with a chorus of happy nurses, until his little body went limp in my arms just as they told me it would.
I started sobbing.
Do you know that uncontrolled ugly cry of late pregnancy? The one where you start and cannot stop? I did that in an OR at Newton-Wellesley until a very kind nurse gave me a hug and took me to the coffee cart where I drowned my sorrows in more coffee than is recommended for a pregnant woman.
My son recovered from anesthesia almost immediately and was back to his usual wild self. The anesthesiologist cautioned me to keep him calm for the next 12-24 hours. That comment made me laugh for the first time that day.
Together, my son and I drove back to NH. One would think that after such an early and stressful morning that had included anesthesia, that he would fall asleep for part of the drive home, but he screamed until I pulled into the garage and turned the car off. I was relieved that it was over and hopeful that we would have an answer soon.
When the GI called to tell me that my son did, in fact, still have silent reflux that had irritated his esophagus, I wanted to reach through the phone and strangle him. Our son was put on medication to treat the reflux and his weight gradually climbed until he was finally, blessedly, back on the growth chart.
I still remember the day, March 11th, when MGH Waltham told us we no longer needed to come back. What a Kenny Hour we had that day!
This post has been in my drafts folder since I first started blogging…
… and it’s been in my heart and mind even longer. Every time I would sit down to write about this experience, I would be transported back to those early years. They were so hard. Years have passed and these emotions are as real and raw now as they were back then.
This morning, I read this article on Coffee and Crumbs and to say it resonated with me would be a gargantuan understatement.
My son was a really hard baby. He cried a lot. He never let me put him down. He was never calm.
It’s okay to say that it’s hard.
It’s okay to say that it sucks.
It’s okay to reassess the starting line, multiple times if need be.
It doesn’t make you a bad mom. You are not failing.
Our failure to thrive years were, by far, our darkest days. Part of the reason why this post has been in my drafts so long is because it’s extremely hard to describe, in words, what it feels like as a mom to be told that your child is not thriving. The diagnosis implies that you are failing at meeting a basic need. When you think of motherhood, you never think that meeting basic needs could be an issue.
Well, I’ve come out of it and we’re on the other side. My son is anything but a failure to thrive. In fact, I can barely keep up with his boundless enthusiasm and insatiable curiosity most days.
If you are a parent of a child diagnosed with FTT, I want you to know these 5 things:
- You are not failing.
- You are not alone.
- The term failure to thrive is a TERRIBLE one.
- Even if you are a first-time mom and you are dealing with a highly recommended specialist with years of experience, go with your gut because you know your child better than any physician ever will.
- Find someone who has been through it already. You will feel better. I am eternally thankful for my friend K8 who supported me through it all.