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#tbt to when my studio wasn’t just a storage unit
I haven’t really known how to talk about what’s happened in the past month. I’m just starting to process it, and it’s extra hard because I don’t have many answers. Where to begin? We’ll start with the good. Mira is in a much better place than she was 4 weeks ago. She has doubled her weight since birth, on her way to a hefty 4 pounds. She’s as feisty as ever, asserting her opinion with karate kicks and grunts. She is a fighter, which is good because she’s had to fight a lot. Four weeks ago, Mira became sick with an infection called NEC. This is when bacteria proliferate in the bowel, leading to tissue death and rupture. It’s common among very young preemies, and many do not survive. Of course, we did not know this at the time. Within 12 hours, Mira went from cranky and fussy to gravely Ill. She was transferred to another hospital and had 2 emergency surgeries that saved her life, but also removed most of her small intestine and some colon. It is likely she will live with a condition called short bowel syndrome. This is when there is not enough intestines to properly absorb nutrients to support the body. Often people with this have to rely on IV nutrition or a feeding tube in the stomach. Mira is on IV nutrition now, and will likely be on it when we get to take her home. But, her gestational age is only 35 weeks. Her due date is November 3rd. She has a lot of growing to do. I am researching ways to optimize her nutrition through the small amounts of breast milk we can give her in hopes of stimulating her remaining gut to adapt as best it can. I am looking to connect with other families and folks who have been through similar gastrointestinal issues to learn everything I can. Same goes for people who are using nutrition to heal the body. If this sounds like anyone you know send them my way. Obviously this is not how one imagines bringing a child into the world. You never want to think about your baby being anything less than whole. But this is where we’re at. And I have to keep reminding myself we’re damn lucky to be here.
Conspicuous camouflage #tbt
Two weeks ago, the doctors would not even talk to us about Mira’s post op future. Today the surgeon discussed with us some future milestones that we will slowly be working toward. Very slowly. Which feels difficult, but then I remember that Mira should still be in my womb right now. She has already been through so much in her month here on earth it’s kind of unbelievable. So we will be taking it slow, trying to find the balance of being grateful for every moment we have, while hoping for the future.