Kiera has a new trick: she pretends to be asleep. I'm not sure if she thinks we'll leave her alone when she does this or if she's playing. She's been caught peeking when I turn away and then shuts her eyes when I look back at her. Hmmm.

Kiera's tummy isn't quite working properly right now. She's having reflux problems and being fed through a tube through her nose into her intestines instead of her g-tube into her stomach. Her pulmonologist is still cautiously optimistic about her outcome given the info from the heart catheter. She is still very sick and fragile, and we must pray for no pneumonias which would set her back. We are in a wean and wait mode in which we try to wean some of her support and see how she does. She is still on pretty high settings on her ventilator and must get much lower before she can transition to a home ventilator and work towards coming home on equipment. The doctors have prepared us that it may very well be Kiera's first birthday (in August) before she comes home.

By the way, Kiera is 13 lbs 5 oz now. She's always hot, so half the time I visit her, they have her in just a diaper, which drives me crazy since she has such a great assortment of cute clothes to outgrow. I feel like I'm missing out on her baby time.

Therese

brought to you by Great American Steakhouse http://steakandwine.com

A Really Good Day

Kiera went in this afternoon for a second crack at her heart catheterization. They "float" a sensor into her heart to measure the pressures in individual chambers and the arteries and veins surrounding the heart. She had no issues for the procedure The pressures in her heart are still a bit higher than normal, but nothing like the rates that she had a month ago. Her arteries to the lungs were showing pressure almost twice as high as they should be, but her heart doctor assured us that this is not at a dangerous level.

Second good news is that the veins into her lungs were looking normal, healthy, and had a good blood flow. Hurrah! She still has chronic lung disease, but hopefully, with time, her lungs will grow stronger and new alvioli. We will probably have to wait until next week to talk to her lung doctor to see what this means for her long-term outcome (he wasn't around to give his opinion).

Jer

ps: feel free to leave a note in the comments section!

Christmas 2006, before Kiera got the trachiostomy. She's sleeping, but still sucking on her binkie.


Kiera, late Feb 2007, when she was still in the medically induced coma.

and a link to the biz that will be paying for Kiera's hospital bills (those not covered by Insurance & Medicare!) http://steakandwine.com

I will be throwing in this link occasionally in the hopes the Steak & Wine site gets higher in some of the search engines!

Jer

March 20

Kiera

This is a blog for the friends and family for Kiera Rose Wright, to keep you up to date on how she is doing. It will be easier to update, we can include pics faster than just e-mailing them out. We'll try to update once a week at least.

The pic to the right is from last August 2006, when Kiera was about 2 weeks old.

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This pic is from February 2007. Our Michellin Girl has gotten a bit bigger!

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Here's the news since the last e-mail: Kiera was 7 months old last Monday 3/12. Kiera was scheduled for her cardiac catheter last Friday 3/16. After 4 hours of waiting, the doctors came back to the room with Kiera and had been unable to find a vein for the catheter insertion. They are contemplating having a different heart surgeon try again this Friday 3/23, and depending on the results, we may still be looking at a transfer to another hospital. We will know more later this week. Kiera has been weened off her Nitric Oxide since Sunday. So far she is doing okay without it. She did have an irregular EKG this week and they will be watching it for the next 3 days.

She is getting full feedings of Neocate formula because it is easier for her to process than the carbs and lactose in breast milk right now. Sooo, I am storing breastmilk in our freezer for later.

She is getting Occupational Therapy again and handling it fairly well. She has some delays that were not there before her pulmonary episode and drug induced coma. She has lost her suck reflex and a tongue reflex but it will hopefully come back with practice. Her eyes wander a little when she is tired, but it may be the drugs she is still on affecting her eye muscles.

She has been laughing with mommy and daddy this week. Although she doesn't make sound because of her trach tube interferring with her vocal chords, you can see her laugh, and she laughs whenever daddy and I laugh with her. It's incredibly cute although tricky to catch on film.

That's all for now. I'll keep you posted.