My tweets

May. 9th, 2015 12:00 pm
celeste_noelani: (Default)
[personal profile] celeste_noelani
  • Fri, 12:01: I was having a tough enough time with Mother's Day weekend as it is, and this is just making is so much shittier.
  • Fri, 12:23: Had a chance to step away and have lunch with the teenager so I feel less totally triggered, but I'm still livid and reeling.
  • Fri, 12:25: Triggery, #pregnancyloss #stillbirth #NICU #grief tweets ahead, so be gentle with yourself okay?
  • Fri, 12:27: And here's the NYT article that has me all freaked out: http://t.co/n2xiUhTPVG
  • Fri, 12:28: My oldest, who I just had a lovely lunch break with, was born at 26 wks and was in the #NICU for 16 wks. He's so gorgeous, you guys.
  • Fri, 12:28: But the road of being a NICU Mom, and of being a NICU survivor, is long and arduous and leaves lasting impressions. Many of them traumatic.
  • Fri, 12:30: His issues are minor. He has asthma (been hospitalized for related issues after leaving the NICU) and has moderate vision issues.
  • Fri, 12:31: He also has some developmental and learning disabilities / delays that are not as clearly related to his prematurity, but it seems to fit.
  • Fri, 12:32: We are SO fortunate that we have the resources to tend to his special needs. Now. I wasn't always so financially stable.
  • Fri, 12:33: He was born with his TEETH, you guys. His gums hadn't formed over his tooth buds, so his baby teeth were exposed. It was SO creepy looking.
  • Fri, 12:34: His gums did, of course, develop and his teeth were covered up. Yay! Except when they came in, they were malformed and prone to decay.
  • Fri, 12:35: We were on state dental at the time and the dentist we saw lectured me about my neglectful parenting. Mentioned CPS.
  • Fri, 12:36: Wanted to pull most of his baby teeth. Baby teeth! At five! Fortunately I saw a better dentist & we got his teeth fixed. But it was a ROAD.
  • Fri, 12:37: the fact that typical health care providers aren't knowledgeable about lasting impacts of prematurity is a real problem NICU parents face.
  • Fri, 12:38: Of course, lots and lots of providers are knowledgeable, caring, and super on top of it. But still. Luck of the draw?
  • Fri, 12:38: Parents of preemies have so many parenting obligations and challenges that parents of non-preemies just don't face.
  • Fri, 12:40: FFWD to 2009, when my second son was #stillborn at 22 weeks gestation exactly. My water broke 2 days before, at 21 wks 5 d.
  • Fri, 12:41: I'm sorry, I need a moment.
  • Fri, 12:44: So I've held a dead 22 week old baby in my hands. Viability of 22 weekers is of signifant importance to me.
  • Fri, 12:46: The night my water broke, I knew my son was too small to survive. I held on to hope like the motherfucking warrior I am, but still. I knew.
  • Fri, 12:47: My husband and I discussed "heroic measures" at length. Could we be mico-premie NICU parents? I mean really?
  • Fri, 12:48: HOW could we make that work, even if the slim chances of his survival were offered? I knew intimately the struggles of premature babies.
  • Fri, 12:52: Our choices were: induce labor and fight for heroic measures or stay pregnant and hope for the best. Those were the only two options.
  • Fri, 12:53: I chose, *I* chose, to remain pregnant and to give my son as much time in utero as possible. I was at risk of infection the whole time.
  • Fri, 12:54: It didn't work, my son died, I fucking miss him and grieve him desperately over five years later.
  • Fri, 12:56: And I STILL, with everything I have in my being, don't understand what the *possibility* of viability for 22 wk babies has to do w abortion.
  • Fri, 13:00: I don't understand why anyone would look at a "tiny minority" of babies who thrive after micro-prematurity and immediately think abortion.
  • Fri, 13:01: I mean, I don't understand anti-abortion politics in general, but this is a specific issue I can speak to at some length.
  • Fri, 13:03: Anyone who looks at advancements in any kind of pre / neonatal care and immediately sees it as a crack to challenge Roe v Wade is scary.
  • Fri, 13:05: But even more importantly, they are WRONG. Pregnancy termination must remain a protected choice. Period.
  • Fri, 13:06: We need to take the concept of anti-termination legislation completely off the table and focus on the real issues people are facing.
  • Fri, 13:10: We need advancements in medical care AND in social services. Complete systemic support for the people facing *any* reason for termination.
  • Fri, 13:11: *Including* empathetic and patient focused after care for those who find themselves needing any kind of termination procedure.
  • Fri, 13:12: We need advancements in termination methods AND advancements in methods used to avoid termination.
  • Fri, 13:14: But what we 100% don't need is every advancement in pre/neonatal care fuelling anti-abortion policies. You fucks.
  • Fri, 13:27: I wish there was more support for the parents who *do* raise these babies born so early, often with significant needs.
  • Fri, 13:30: My son, the NICU survivor, has special needs that impact his daily life. It's hard to get him the support he needs at school.
  • Fri, 13:31: Sure, I could find him all sorts of expensive private schools, tutors, therapies. Jump through thousands of hoops.
  • Fri, 13:32: But I already have to spend so much time / enrgy tending to my son's needs. Why make it that much harder for special needs parents?
  • Fri, 13:38: Anyway, that's (some of) my beef with viability politics. Now I have to go see to the four year old, who had a tough day at the dentist.
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