We got some of Ava’s lab work back. She has some extremely elevated protein levels that indicate a metabolic disorder, and her glucose levels may indicate diabetes, however, we won’t know for sure until we see the specialist. We do know she is getting lots of milk from nursing (six to twelve ounces per nursing session) because we bought and infant scale to weigh her before and after feedings. But even so, she continued to lose weight, possibly due to an inability to process but a portion of what she consumes on account of the metabolic disorder.

Ava’s doctors were pushing an NG tube and supplementation with formula. Two weeks following her initial diagnosis, she dropped even more weight, going from 11 pounds and 8 ounces to 10 pounds and 11 ounces. She wasn’t doing well. She was starting to look scary. The skin around her hips, at the top of her thighs, her elbows and her armpits, it was wrinkling and sagging, much like an old woman’s would or an adult who lost weight much too rapidly.

It is scary.

I started panicking. I don’t want a tube shoved down my baby’s nose, and I most certainly don’t want a tube surgically placed through her abdomen. I also don’t want her on formula if I can help it. But when she dropped so much weight so quickly, I got scared. I started to consider formula, but had a hard time thinking that if she had a hard time processing breast milk, that formula would be any easier.

I didn’t understand why we were having issues. I was making a decent amount. She was eating often. Why were we having trouble? I mean, I used to be a milk donor even!

Then it hit me. Milk donors. I could try to supplement Ava with donor milk. I don’t know why it didn’t occur to me sooner, having been such a large part of my life in prior years, but it didn’t.

I found a local woman who was able to give us a small amount of pumped milk, and in the five days she was on it, she gained 10 ounces. I nursed her like normal, then offered her a bottle after a nursing session to make sure my supply wouldn’t take a hit. The rapid weight gain was incredible, but I was running low on donor milk. I found another woman about an hour away, funny enough, one of my husband’s former co-workers, and we were able to go pick milk up from her. It was, again, a small amount, but it was enough to hold us over.

Then, I got in touch with a couple of amazing women in Wasilla, where Ava was born, willing to donate milk for Ava. We had to do some planning and shuffling to make it work, but I drove to Wasilla and was able to get a 54 quart cooler packed full of donor milk, less the bag of ice to keep it cool.

All we can do now, is hope and pray that the weight gain continues and that this keeps working.