What is Reddit's opinion of Preemie Voices: Young men and women born very prematurely describe their lives, challenges and achievements?

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It is just tough. I read this a little later in my micro mom journey (my son is now about 2.5 and he was a 24-weeker; I read this when he was maybe 6 months adjusted), but I found Preemie Voices by Dr. Saroj Saigal to be the best thing that helped contextualize things for me. It’s a book in two parts. In the first part, former micro preemies from the late 70s / early 80s write first hand accounts of their lives at around 30. They have a wide range of outcomes - the foreword points out that ROP was less known in this era and there are quite a few ex-micros who are blind - but over all live delightfully boring lives. Even the ones who would be categorized as disabled or impaired in some way. The second part of more academic-ish. Some chapters talk about the history of neonatology, but starting around chapter five it gets into the stuff that really interested me as a parent:

• Chapter 4 Long-term outcomes of premature infants
• Chapter 5 The McMaster studies on the outcomes of ELBW infants: from infancy to adulthood
• Chapter 6 Quality of life: the perspectives of former premature infants
• Chapter 7 Differences in perspectives on Quality of Life: parents, health professionals and teenagers
• Chapter 8 Siblings of prematurely born infants with disabilities: their quality of life
• Chapter 9 Issues in childhood disability: A forty-year perspective on a changing field

There’s a lot of information there that comforted me, particularly in chapters 5 / 6 / 7. It’s one of the only things that made me feel like, okay, this is going to effect my son’s whole life. But that doesn’t mean he’s not going to have a good life.

He’s 2.5 now and we still live the therapy life. Sometimes my kid is so smart he blows me away. But he has a speech delay, no real words yet, and other areas he struggles with. I have had so accept that we are living in some in between state and might be here a very long time. Where in so many regards, he is just a normal kid, but in others I know he is behind and I don’t know what that will mean. Some days it’s maddening, some days are just really good and all this worry about the future seems beside the point. I don’t know when / if that changes. I am hoping by the time he’s five he’ll be more caught up and things may feel more normal. Or maybe this is just part of what being a parent is for me, and when I bring this up at his high school gradation someday he will roll his eyes at me and tell me to stop. Maybe both.

I do seek out success stories, but I have also modified my criteria for success somewhat. I think society primes us to equate success with achievement, but I am trying to remember that a good life is a balanced life, a joyful life. And you do not need to be a rocket scientist who was on the honor roll every semester as a child fo be a happy adult. It’s mad me think a lot about what lessons I want my son to learn. That I was him to value effort over achievement. I think a lot about, “how do I help him love learning even if school doesn’t come easily?” That kind of thing.

I am rambling. I guess the short of it is, this worry stays with you, but you find ways to cope. It’s not easy. When you get out of the hospital stage, it changes but it’s also just a part of life.

I’ll add - I did seek therapy for a while, just about a year ago, when the speech delay was really becoming apparent. It did help somewhat to talk through all those thoughts. I love my husband and he is amazing, but he was also going through his own feelings about all this and I didn’t want to dump every anxiety onto him. I could absolutely dump them all on my therapist, and she could help me sort of the legitimate worry vs me catastrophizing.

I hope your kiddo gets his act together and starts packing on the pounds 🤞🤞 hope the rest of his journey is uneventful and he takes to the bottle easily when the time comes!