It's a One-derful Life

And just like that, Verity is ONE year old! The days (and nights) were long, but this last year really did seem to go by in a whirlwind.

After a whopping ONE hour of snoozing tonight, I gave up and brought my fussy girl downstairs so my hubby can sleep alone in our comfy bed. (He had Verity starting around 2:30am last night.) As I snuggled her on my shoulder, I marveled at how solid she feels now, all 13 pounds, 14 ounces of her. I am thankful for how she holds her head up so well I don't have to support her neck with my other hand (which makes carrying the feeding pump on a pole that much easier). I am thankful that her feedings are manageable and no longer causing her to vomit multiple times a day. I am thankful that on the whole, she is a fairly content, happy baby--something I honestly did not think we would be able to say when we were struggling to keep food in her belly and sleep longer than 45 minutes (or less) at a time.

We really have come a long way.

A snapshot of Verity at ONE year, ONE week, and ONE day:

• 13 pounds, 14 ounces
• 25 inches long
• Fed via g-tube 24 hours a day, soon to be a ratio of 1/2 breast milk and 1/2 Nourish (an organic, whole foods formula)
• Starting to try purees--we are not having luck with liquids, but two days of smushed avocado on a spoon have been a decent start to oral feeds! I have no assumptions or expectations, only excitement and gratitude.
• Rolls from back to sides and sometimes from tummy to sides
• Reaches for toys
• Tracks people and toys visually
• Loves bright lights
• Smiles and chortles
• Does silly things with her mouth: blows raspberries, sucks in bottom lip, etc.
• Loves her pacifier and holds it herself with her hands (still has a weak suck)
• Is not on oxygen at night...long story, but bottom line is we value sleep, and we think the reflux had much to do with the obstructive apnea. Waiting for another sleep study...meanwhile, the pulse ox assures us that her sats are great.
• Has physical and occupational therapy sessions once a week at home.
• Gets her workout from her day nurse, who faithfully helps Verity stretch and use her muscles throughout the day.
• Has a night nurse Sunday and Monday nights for 8-hour shifts. (Yay, sleep for Mom and Dad!)

I'm sure there are other highlights I should list, but it is nearly ONE in the morning, and since Verity has drifted off to sleep, I am going to lie down next to her on the couch and see if I can get some rest myself!

Book Project

**Update**
I am so thrilled that we have mailed books for FREE to 15 Trisomy families so far. I now have a waiting list of families who would love a copy.

Looking for people who want to be a double blessing! Our family would like to attend the SOFT (Support Organization for Trisomy) conference this summer. I’ve been pondering ways to raise money to help cover the conference fees and have an idea that could benefit lots of other people as well! Last year I wrote a book to help Verity’s siblings prepare for her arrival—the arrival of a baby sister who was different. An artist friend beautifully illustrated my text and helped me put together a professional, finished product. When someone purchases a book, I receive a small royalty that we are setting aside to help pay for the conference. I realize that many of my friends and family are not directly touched by a Trisomy situation…thus the dilemma of spreading the word to ask people to order a book.

HOWEVER! There are many folks who WOULD be blessed and encouraged by this book! Here are some ideas…
• Order books to be given for free to families with a Trisomy 13/18 diagnosis. (You can have them shipped to me and I’ll cover postage to mail to families who join the Trisomy Facebook group. I will also take some to the SOFT conference to hand out.)
• Donate copies to a local crisis pregnancy center. (You can write a personal message inside for extra impact!)
• Donate copies to your local library.
• Donate copies to hospital resource centers, genetic counselors, palliative care teams, NICUs, etc.

Books are $15 and can be ordered at the following links:
Boy version
Girl version

Would you help in some way? Even if you aren’t able to order any books to give away, would you please share this post and spread the word? Please pm me with questions or to ask for my address if you’d like to have books shipped to me.

I would love to see many families blessed with the truths that are shared in this book…our babies may be different, but they are loved, special, created in God’s image with a purpose. Thank you in advance for helping to bring truth and peace (“Verity Irene!”) to others!

Verity: Latin, meaning "truth"
Irene: Greek, meaning "peace"