Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, November 30, 2011

Happy 1st Birthday, Julia!




Today is a day I did not expect.  Today is a day that seemed impossible.  Today is a day that I dared not prepare for.   Today, I am so thankful for you. Today, you, my sweet Julia, are one year old!!! Today is a day to celebrate!

Today we know that the many doctors we have seen were wrong. Today we know that we have made good decisions for you.  Today you are a very special part of our family.  Today is a day to celebrate!

Today we will eat cake.  Today we will blow out the candle. Today we will sing the birthday songs MANY times. Today we will take lots of pictures and videos.  Today we will open gifts.  Today is a day to celebrate!

Today we will have a family party at our house.  Today your Nana's church is having a party in your honor. Today our friends and family are sending birthday greetings from across the country. Today a big party is being planned for you for Saturday. Today is a day to celebrate!

We celebrate you, Julia! We thank God for each and every day with you! We love you so much precious daughter and much-adored baby sister! HAPPY, HAPPY 1ST BIRTHDAY!!!!


Tuesday, November 29, 2011

The Day Before and After

I am trying very hard to focus on the present this week instead of the events of a year ago. However, the memories are crowding my thoughts. I am also super tired after a few long nights, so efforts to direct my thoughts are much less effective. I hope in expressing some of these thoughts that I can focus on this week. 2011. Not 2010.

I was 37 weeks pregnant with Julia. My hospital bag had been packed for weeks due to concerns over placental insufficiency. I was in the perinatologists' office twice every week for monitoring and was warned each time that this might be the day for admission. We "knew" several things-- Julia had many heart problems, she wasn't growing well, she was breech, I had too much amniotic fluid, one of Julia's kidneys was abnormal, and one of the two umbilical arteries carrying nutrients to the placenta had closed. The doctors strongly suspected a chromosomal disorder and were "convinced" it was Down Syndrome we were dealing with (mostly due to a very small or absent nasal bone).

At this particular appointment, one year ago today, I had an amniocentesis performed to check for lung maturity. We were preparing for a delivery that week and wanted to administer steroids for the lungs if needed. After the test, Julia started having decelerations in her heart rate. We were admitted for delivery pending the amnio results. The results came back -- lungs not mature -- so we began steroid injections and scheduled delivery for the following day. Julia's heart rate decelerations continued on and off throughout the day and night. We were so afraid but ready to deliver.

We had one day of Julia's life when we did not know her diagnosis. The docs were pretty sure after examining her that she did not have Down Syndrome. The genetic tests for chromosomal abnormalities were performed. I was recovering from the c-section and was too sick to make it to the nicu to see Julia that day. I briefly saw her after delivery as they wheeled her to the nicu. Her little eyes were open and she looked right at me. I felt relief that she was here and intense anxiety over what was to come. And I felt love -- a love that felt both fierce and fragile. Marc spent most of that first day in the nicu with Julia. He kept me updated with pictures and with doctor consultations.

We received the diagnosis on Julia's second day. It was shortly after I visited her in the nicu for the first time. She was tiny and beautiful. The nurses made Julia a hat with a cute bow. Julia was breathing on her own -- no oxygen or bipap. Receiving the news was unimaginably difficult. Marc has described it as being hit in the face with a baseball bat. I had had a feeling for weeks that things were worse than we knew, and I feared we would not even get to bring Julia home with us. That was my sole remaining prayer at that point -- that we could bring her home and care for her. My intuition was both right and wrong. Julia's diagnosis was much worse than the docs suspected. But, we were able to bring her home and she has now been at home with us for 365 days!!! We were told she would live only a few days and we came home on hospice care. We stopped hospice care 5 months ago. Julia is here. She is a very real part of our family's life. She is the baby sister. I am holding her now and looking at her beautiful, pink face. She is contentedly taking her bottle. She is reaching out to me with her right hand. She is where she belongs. And now it's time to put away the tears and just celebrate.


Saturday, November 26, 2011

Thanksgiving

The cousins on Thanksgiving day

Since moving to VA our Thanksgiving routine has changed. Previously we would drive from Maryland to Kentucky to be with Marc's extended family. That was when Syd was in preschool and we could travel more freely. When we moved here, Sydney began kindergarten. That first year she was sick, and we had to cancel our trip. We discovered how nice it could be to relax at home instead of being on the road. Last year I was pregnant with Julia and on bed rest and unable to travel. We enjoyed a quiet and delicious Thanksgiving with my mom and some dear friends in our area. This year we just are not up to making the 10 hour trip with Julia over a four day weekend. And then there's the traffic in and out of the DC area to consider. It is truly a nightmare on a holiday weekend. While I'm a bit sad we have missed out on Thanksgiving in Kentucky for a few years now, I realize this is just another part of our new normal. We have gladly made and will continue to make the necessary adjustments to our life with Julia. Hopefully we can make a trip to Kentucky next summer sometime when school is out, the roads are less crowded, and it is not flu season.

This year my sister and her kids and my mom and stepdad joined us for Thanksgiving.  It was so nice to be at home and to not feel rushed to visit lots of people on the big day.  We did, however, overdo things a little by cooking for way more than the five adults and four children (plus Grady and Julia) who would be eating Thanksgiving dinner.  Everything was delicious, though, and we are working our way through some yummy leftovers.  The kids had a blast playing with their cousins, and the weather here was in the 60s and sunny (usually it's pretty cold by this time of year). 

We have much to be thankful for this year.  Mostly we are thankful to have Julia here with us.  I do feel a bit like I imagine the settlers did at the first Thanksgiving -- thankful to have made it through a very difficult year.  Its more like marking the passage of this year than a celebration.  We of course celebrate each day we have with Julia.  The accumulation of a year's worth of days is weighty, though, and I have felt that weight alongside my thankfulness this holiday .  I want to focus on the good of this year, but I feel that the good in this year cannot be seen or valued without noting the struggles.  Hopefully these ramblings make some sense.

We ended our week of Thanksgiving fun with an early birthday celebration for Julia before everyone had to leave for home.  Julia was a good sport as we sang happy birthday twice, made her wear a party hat, and opened her presents!  Of course she had a lot of help from her siblings and cousins!  We look forward to celebrating Julia's amazing birthday all week!

Tuesday, November 22, 2011

Report Card Time

We had Julia's six month assessment with the early intervention program recently.  Her therapist and case coordinator were present.  It was the first time the case coordinator had seen Julia since our inital enrollment when she was four months old.  We know how much Julia has changed in that time, but she was blown away!  You have met several of the goals we set back in April!  We still have a few more months on their schedule for the other initial goals.  In April I had no idea what to expect.  The goals set seemed like a lifetime away.  Julia had not even smiled at that point! Now here we are and she is making definite and measurable gains! The therapist and case coordinator both think she would make even quicker gains with a few more pounds, and I hope we can work on that, too.  I am so very proud of my sweet Julia!

The therapist brought a chair and oversized tray for Julia to try to work on sitting and playing.  For so long we were told she was too small for any of the chairs, but she definitely is not too small! Although she was not too sure of the chair at first, I hope she can get used to it and enjoy more play time.  Many thanks to Julia's therapist for bringing this to us!

Monday, November 21, 2011

Fall Activities




With November nearly over, our lives will be settling from some of the kids' fall activities.  Isaac had his final soccer game of the season a few weeks ago.  This was his first team sport, and he loved it.  One of his friends from preschool was on his team, and they had a blast.  We had a lot of rain this fall and a few cancelled games, but the games he played in generally had perfect weather.  By that last game, though, the cold weather had arrived.  It was time to be done!  He was excited to get his first trophy.  As fun as it was for Isaac, I am glad to have our Monday nights and Saturday mornings free again...for now.



My oldest daughter performed in her first Nutcracker ballet this weekend after preparing for the last two months. There were four official performances. The shows were beautiful and the dancers on pointe were so impressive. Sydney had a small but sweet part as a snow angel, and she did a fantastic job! We had many talks about how important it is to be willing to do any part in a show and to give it your best. She did just that. I am very proud of her. Last week alone she spent more than 20 hours at rehearsals in addition to the four shows. I volunteered for a little less than half of that time, and I was worn out. Sydney had a lot of fun and now is very happy to be done!

Wednesday, November 16, 2011

The Calm

After last week's sleepless nights, this week is much better. It turns out that Julia was very uncomfortable and not sleeping because she was very constipated. She was still eating okay, which is why we were not certain this was the cause all week. On Saturday while I was at dance rehearsals with Sydney, Julia's little body finally decided to get through this constipation. Marc had lots to clean up after the "explosion" and Julia felt MUCH better and slept. She has been feeling much better and sleeping much better!
Julia impressed her OT yesterday with her interactions, smiles, and responsiveness. She was extra cooperative but she let the OT know when she needed a break. As soon as the OT sat her in her lounger pillow she looked up at the therapist and smiled. It was great timing!
Julia has also been imitating us with hand motions and mouth motions this week. It is so encouraging to see her accomplish these little things! She surprises us constantly.
Today begins an 11 day stretch of house guests. The Illinois grandparents arrive today for the weekend and to attend the Nutcracker. Then the cousins and Alabama grandparents arrive for Thanksgiving week! The house may not be calm for the next week and a half but I hope Julia can remain her calm, sweet, pleasant self!


Thursday, November 10, 2011

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!

Tuesday, November 8, 2011

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 Community Group
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!


Friday, November 4, 2011

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!

Wednesday, November 2, 2011

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.