Blogging Hallie and Lea's Life: PTSD

Tuesday, August 25, 2009

Not Merely Shameless Self-Promotion...

I did the interview for this piece by Laurie Tarkan that appeared today in the New York Times because the mainstream media is so much more comfortable talking about miracle babies when they do pieces on micropreemie parenting than they are discussing the realities that we and our kids face.

The article's author really 'got it' and I salute the extent to which she did not sugarcoat our experiences. None of what we went through back in the NICU or go through after our kids are home detracts one iota from the love we feel for our children, but it does change who we are as parents. Having the New York Times profile this is a very good thing and hopefully there will be more stories like this one.

About Hallie Rose and Lea Paxton

Hallie Rose was born on June 11, 2006 after her mommy went into pre-term labor at 23 weeks with Hallie and her twin sister, Olivia Skye. She spent 121 days at the Intensive Care Nursery at Pennsylvania Hospital in Philadelphia (one of the only places that will even dream of taking 23 weekers) where she got expert care from a team of Neonatologists, nurses, Physicians' Assistants, and Nurse Practitioners. Her mommies were constant fixtures in the ICN and have made a whole slew of lifelong friends there. Since her homecoming on October 10, 2006, Hallie has thrived. Amazingly, her lungs are developing well for a baby with BPD (Bronchopulmonary dysplasia) and she managed to avoid laser surgery for ROP (Retinopathy of Prematurity). She still has some reflux and delayed gastric emptying, but her food allergies and sensitivities are abating. Unfortunately, they did their damage, so Hallie has a lot of trouble eating but she's made great progress on solid foods during the final months of 2008 and the opening ones of 2009. She is finally making some progress in terms of eating solids and is now pronouncing lots of stuff (even if she doesn't really like eating it) to be 'delicious.'

Hallie also has an expressive speech delay, but this, too, is improving. She's got a huge vocabulary that is above her chronological age and is working on the pragmatic dimention of speech. Her voice is soft, mostly due to shyness and a paralyzed left vocal cord, but she has a way of making her needs known!

Hallie continues to have delays in her fine and gross motor skills and some raging Sensory Processing issues, all things considered, Hallie is doing miraculously well. She walks, she runs, she climbs, she signs, she talks a little, and is the most inquisitive person we know. While she was recently diagnosed with High Functioning Autism, Hallie has nevertheless managed to establish and maintain a lot of connections to the people in her world. Between Floortime/DIR, lots of OT, lots of speech therapy, and playdates with her favorite playmates, Hallie is making tons of progress. In other words, Hallie is our hero and this blog is mostly about her.

But not all about her: on 31 January 2009, Hallie became the big sister to a 39 weeker, Lea Paxton. Lea's middle name is rooted in the Latin for peace (Pax), and thus she honors her older sister, Olivia, whose name also stands for peace. Lea is a robust baby who is developing well and who is loved by all of us, and especially Hallie (who is very good at returning her blankets, burp cloths, toys, and 'blinkies,' but only after trying out the latter).

Hallie has lots of real life friends, but welcomes virtual ones too!

Blogging Hallie and Lea's Life

How Old is Hallie?

How Old is Lea?

Tuesday, August 25, 2009

Not Merely Shameless Self-Promotion...

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