Sleepless

We have had several sleepless nights in the last week. Julia can sleep long stretches of 5-6 hours but she may not start that stretch until 2 or 3 AM. (Or later-- one night she was literally awake until 8 AM) Marc and I have been trying to share the wakeful hours so we at least each get some sleep.  On the nights when Julia is awake between 2 and 5, that does not work out so well.  And she is not a cry-it-out, self-soothing kind of baby.  (We also have never really been cry-it-out parents even with our other two.) Having her "regular" sleep pattern interrupted also disrupts her feeding which can lead to her being hungry and sleepy (fussy!) at the same time. Throw a little constipation and a couple of budding teeth into the mix and you have a rough set of days! I am hoping this all does not mean that she is again coming down with a cold, but we will wait and see.  Here's hoping that she will sleep well tonight and wake up ready to eat!

Sweet Things

I have several sweet keepsakes from when each of my children was born. My favorites are the handmade items such as blankets and quilts. The beautiful blankets we received make me wish I could knit, crochet, or sew. Maybe that will be in my future... When Julia was born, our life group from our church in Maryland got together and made a beautiful little quilt for her. It was super soft and embroidered with her name. Our friends made it the night she was born. They said it was kind of like an old-fashioned quilting bee. It was delivered the day we brought Julia home in a sweet basket. Also included were several extra quilting squares on which our friends wrote out prayers, scriptures, and letters for Julia. It was all so beautiful -- just thinking about it and the love that went into it brings me to tears. I have included some photos of the quilt and of newborn Julia in the quilt. We received a beautiful crocheted blanket for Julia from Marc's nurse and coworker. She worked on it for weeks before Julia's birth and then put in extra time when Julia was born to get it to us quickly. (Julia was born nearly 3 weeks ahead of her due date.) We were so surprised and overwhelmed at the gesture. We will treasure it always.

Julia and her blanket made by CRCC friends

Julia and her blanket made by Doreen

I also have baby name jewelry that I love. I started with a bracelet with Sydney's name on it and added Isaac's once he was born. I have a ring engraved with Julia's name. My latest is a necklace engraved with all three kids names plus my and Marc's initials. Can you tell I like jewelry?

Baby name jewelry

My other favorite keepsakes for all three kids are handprint and footprint art. There is a company called "Piggies and Paws" that specializes in this. I already had a few prints of Sydney and Isaac that are adorable -- race cars, dinosaurs, mermaids, and princesses. When Julia was born and we brought her home not knowing how much time we would have, I knew I wanted creative prints of her hands and feet done, too. I contacted my local Piggies and Paws representative/artist who I had met several times before. A mutual friend had already told her about Julia, and she came over as soon as she could to take Julia's hand and footprints. I just love these.

Julia's footprint as the baby, my handprint as the tree.

Julia's handprint as a garden

Photos will be our most treasured keepsakes of all of our children. Our next door neighbor is a photographer, and he came over the day after we brought Julia home to photograph her. Some photos from that day appear in the slideshow at the top of the blog. Julia is definitely a well-photographed baby! And it does not just end with taking photos. I used to scrapbook the old-fashioned way, but now I make digital scrapbooks each year for the kids. It is so much easier! Sydney and Isaac really enjoy looking at their books. I hope the books will be a treasure for them as much as me someday.
I am always looking for suggestions for favorite keepsakes -- especially if it is something I can do myself!

More Smiley Julia Photos

This particular day Julia was just full of smiles. She was enjoying playing pat-a-cake and watching us act silly trying to get her to keep smiling. She has also started making a kind of a laughing/raspberry sound when she is really smiling big. It is so cute!

Halloween Fun

Three Little Pumpkins

Halloween was a busy day here!  Isaac's preschool had a Halloween parade and then all of the kids sang us some pumpkin songs.  It was too cute. 


Isaac's parade

Sydney's school day ended early (not for Halloween, Mondays are always early dismissal), and we went to work preparing for the evening.  The pumpkins were carved, costumes assembled, candy was ready to give out, decorations lit, and the driveway was cleared of the many leaves that fall here daily.  Then we were ready to trick or treat! Isaac was Captain America, Sydney was Rapunzel, and Julia a pumpkin. Julia's costume was also worn by Sydney and Isaac when they were babies (see first photo above.)

The kids, my dad, and I trick or treated with some of our neighbor friends for two hours!  Our neighborhood is great for trick or treating.  There are tons of kids out and tons of houses participating.  Marc and Julia stayed home to pass out candy. They ran out before we got back! All in all, it was great fun.



Our littlest pumpkin

 

11 Months!

We just celebrated Julia's 11 month birthday!!! She had a really good day. Sydney requested a red velvet cake for Julia's big day, so that is what we had (no arm twisting here).  It was excellent!  Julia was sleepy when we sang to her, but she was a good sport! Eleven months...that means next month is the big one year birthday! I want to invite the world to celebrate our special girl!

Wedding Fun

Last weekend we took Julia on her first big outing in nearly a month! Out friends S and C were married in Washington DC. Everything was beautiful -- the bride, the reception, the weather, the cake -- everything! Marc went ahead to the ceremony and the kids and I met him at the reception at a fancy hotel in DC. It was fun for all of us to get dressed up and go out. Isaac even wore a tie for the first time! Julia had such a good day. She was full of smiles and seemed to really enjoy the music. 

Small World

Jill and Lily with me and Julia

The Trisomy 18 world is truly a small world. One in 6000 babies are born in th U.S. with Trisomy 18. In raw numbers, approximately 1200 babies are born each year with T18. Of those 1200 babies, approximately 5-10%, or up to about 120, survive until age one. (It's important to note that this survival rate could be higher if more docs were willing to treat each child as an individual instead of as a diagnosis.) In my county of over one million people, I have yet to meet or hear of another family with a child living with T18! Anyway, meeting another T18 family is a rare treat. We were able to do just that last month. The Smith family, with 2.5 year old Lily, was on vacation and driving through our area. They were so kind as to coordinate with our crazy and unpredictable "schedule" so we could meet each other. Lily's mom, Jill, and I have been emailing for several months. She is the mom who showed me the supportive online groups of T18 families that I have found so helpful. She has also been working on a map of T18 families in the U.S. so we can better connect with one another.
 
Jill and her family were able to visit with us in our home. Lily is such a beautiful girl! I was so encouraged watching her movement and interactions! She is such a fighter, like all of our T18 little ones. Lily and her family shared some of their joys and their challenges in raising Lily.  I was thankful to hear how another family balances life with this unusual journey. A big, huge thanks to Lily's family for visiting with us and encouraging us. Sharing this journey with other families, even from a distance, makes a huge difference.  It truly makes us feel less alone.  To learn more about Lily and her amazing journey click here.