My Baby Was Diagnosed With Failure to Thrive

My baby was labeled: failure to thrive.

Whether your baby was diagnosed at 2 weeks old or 5 months old, the label can be scary, overwhelming and simply terrible. Perhaps you are nursing and your milk is not doing what it’s supposed to do. Maybe your baby is taking it in but the milk is not filling him. Or maybe your baby simply will not drink the milk for no apparent reason. That is where it all began with us.

After months of talk of being admitted to the hospital, it finally happened. We had to admit our sweet, little girl for “failure to thrive” at 7 months old. Even in-utero she had periods of growth and periods of weight loss; periods of eating and periods of eating next to nothing. My sweet girl possibly has something terribly concerning going on with her and yet we have no idea what it could be. After hooking her up to IVs for dehydration, we sat and waited.

And waited.

When the doctor finally came by, he only came to tell us we would be seeing a specialist soon. But instead we waited some more.

After finally seeing specialist after specialist, getting blood test after blood test, and having an intrusive Upper GI test, the answer was clear: it was inconclusive. Yet with more medication, she was eating once again and we were able to go home.

The fear of the unknown is overwhelming. Before every feed I question whether or not she will take the bottle. After every feed I add on the ounces she took to my daily mental counting, hoping and praying she reaches the right amount. Because if she doesn’t? Three days in a row and she is back to losing the small amount of precious weight she did gain. On top of this, I am constantly questioning, googling and ranting about it to anyone who will listen. What could my little 7-month-old be sick with? What could possibly be wrong? And why don’t the doctors and specialists know?

Failure to thrive. Failure. My sweet girl is not a failure. She is stronger and braver than I could ever imagine a little girl to be.

A few months later and nothing has changed.

 

Out of medication options we are down to using a tube to feed her — a piece of plastic on her face, into her nose, down into her belly giving her food that she otherwise has no interest in. The diagnosis? Still nothing. At 11 months old, our sweet girl continues to stay small, very small. And here I am. Still waiting. Waiting daily for the doctor’s call for next steps. Waiting for the next appointment with the naturopath, or the GI specialist, or the pediatrician. Waiting for the next weight check, hoping and praying she gained enough that week.

Constantly I am waiting. Waiting obsessively.

The future is unknown for my littlest. The future looks scary at times, worrisome at best. The unknown is so bold and brutal. Yet because of my faith, I am reminded of the One who does know. The One who is above the brutality of the unknown and the fear of the future. The One who has it in His hands and holds it close to His heart. The One I can trust and love and lean on and surrender to, even now. The One who has a love for my sweet Maia larger than even myself, her own mama, knows. Oh, what peace. Peace in the waiting. Peace in the constant unknown.

“Maia” means “close to God.” May I be reminded of the value and beauty of this again and again through my sweet, tiny Maia.

Follow this journey at A Beautiful Alarm.

A version of this post appeared on Her View From Home

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