Update on us- AW and LONG

I have been doing pretty well emotionally, managing the grief much better and feeling so much more joy than I had anticipated since placing my beautiful daughter.  I get pictures by text and updates several times a week and have been visiting once a week for a couple hours when I take breast milk I am pumping for her. I honestly couldn't imagine going through this grief without the regular reassurance that my daughter is doing well and that I get to be a part of her life forever. The hardest part is missing her, and knowing my next visit isn't months away eases that pain significantly. Because my daughter's parents are so loving and open to me, I make a point to be conscientious of their privacy, independence as a family, and needs. And when we're together they say how happy they are she has so much love and they have someone who wants to listen to their parenting wins and woe's. I know this doesn't work for everyone, but I thought I'd share from my perspective for those who are on the fence. I love pumping for her and nursing when I visit because she still needs me and it helps her health significantly.

She has had some pretty significant digestive issues and every formula, store-bought and home-made, have made her very ill. Fortunately she is getting better every day since they stopped mixing in formula and she gets 100% breast milk. Part of her newborn screening came back abnormal, so they think that either she or I could have a metabolic disorder called carnitine uptake deficiency.  I've been praying that I have it, since she couldn't (it's autosomal recessive) and it can be very serious for infants and children, but it seems that's mostly if untreated. It would explain some of my health issues through life, but could also explain her digestive issues. The waiting game for tests to come back has been scary, but her mom and I have found so much solace in each other since getting the initial results.

I'm at a place where I enjoy talking about my experience and want to use it to help others, so if anyone has any questions feel free to post or PM me. Prayers would also be appreciated as we wait for her test results to come back.