Sunday, January 18, 2009

Because indoctrination can never start too soon

Two big events are happening this weekend. The first is the MIT Mystery Hunt, which Ben and I have been doing for something like 10 years. It's an annual puzzle event (think crossword, not jigsaw) that gathers over a thousand of the country's best puzzle solvers on the MIT campus for a weekend-long extravaganza of fun, frustration and sleep deprivation. The second is a Steelers play-off game. (I hear we're also inaugurating a new president or something.)

Even though we postponed our honeymoon to do Mystery Hunt, we couldn't delay parenthood for a few weeks, so we're not very involved with it this year. Still, we've explained Hunt to Blaise and she seems excited about helping next year, when she's healthier and knows some words.

As for the Steelers game, Ben's parents are visiting this weekend and brought Blaise a Terrible Towel. She has a strong grasping reflex and can wave her hands around, which is about the level of skill required for using a Terrible Towel. Not to be outdone, Blaise's Uncle Jim, who is also here this weekend, brought her a little Royals hat. Having been born less than a mile from Fenway, Blaise's first allegiance is to the Red Sox, but the Royals are a nice second team to support. We're planning to keep her an AL baby at least, so we've explained several times why the DH is a good idea. Photos with her visitors and their sports-related gifts will be up soon.

And now for the medical update: Blaise is gaining weight from her IV nutrition at a nice pace. She was born weighing 3 lbs 14 oz (1760 grams), but lost a lot of weight that first weeks. She was down to about 1500 grams (3 lbs 5 oz), but now she's up to 1665 grams (3 lbs 11 oz). It's great to see her gaining weight. She's also doing very well with the minimal oral feedings. In fact, she LOVES the oral feedings. They're also continuing to build up the amount she gets through the tube in her stomach. We'll hit a ceiling on that at some point, but the important part of that exercise is to keep her small intestine active and healthy while she grows on the IV nutrients.


Gib and Abby Brogan said...

Reading your blog reminds me of Ellie's first few months. It sure is a roller coaster ride. You all are doing a great job and your daughter is beautiful. If you ever need to talk to some one who has been through this before, feel free to contact us.
-Abby Brogan

vicki said...

Hi Erin & Ben, I just learned of your blog last night. As I read your accounts of events I treasured every word. I can only imagine how exhausted you must be at the end of the day and yet you take time to share you precious gift with us. Erin reading your entries I can’t help but reminisce of the times I held you as a baby and how you “played” your parents and any one else you could. (Your cute little cheeks helped you immensely.) All the knowledge in the world can not prepare a parent for the incredible ability a tiny baby has to capture a heart. I am so thrilled that you both have such a cherished little Blaise to experience that with. I regret I am not there to hold her and rock her myself. Kiss the bottom of her feet for me. I love those piggy toes. To me the fact that a baby toe toe nail exists is proof there must be a God. Thanks for the pictures. She is a beauty! Of course you can count on being in my thoughts and prayers. Love to you all, Vicki

Sheri said...

i have not met you, but my daughter was born at 33w6d on 6/28/09 with a midgut volvulus. we didn't know it until she was 30 hours old. she had an ex-lap ans about 2/3 of her ileum removed with 68cm remaining. she had her reconnection surgery on 7/28/09 and had grown an additional 16cm but lost her icv in surgery. she came home orally fed on 10/2/09 and has made fantastic progress. blaise's story is eerily similar. hope you don't mind if i continue to follow this blog for feeding tips, etc. thank you for sharing your story. feel free to contact me if you want to.