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, February 29, 2012

Numbers

2/25/11

I have been thinking of how numbers played a big role in Julia's life. The obvious and most impacting numbers are 3 and 18, for trisomy 18. But there are many others...

1 in 880 - my "risk" for trisomy 18 based on my quad screen during my pregnancy with Julia
9% - Julia's size at 30 weeks gestation was estimated to be in the ninth percentile, which earned her the diagnosis of intrauterine growth restriction.
37 weeks - gestational age at which Julia was born
11/30/10 - the date of Julia's birth
5 lbs 1 oz and 18 inches - Julia's measurements at birth
3 - Julia is our third child
34 - my age when Julia was born (Her due date was after my 35th birthday which placed me in the advanced maternal age category.)

We counted her formula intake by milliliters for her first 4 months of life. I could always tell you exactly how many days old Julia was. Julia's weight gain was so slow that we rejoiced over every half pound gained (she averaged gaining a half pound per month). Additionally, Julia's heart function was measured in more numbers: heart rate, oxygen saturation, and lung pressure.

5 - the number of states Julia visited, plus the District of Columbia
110 - the number of episodes of Top Gear Julia "watched" with Marc in the wee hours of the night
11/30/2011 - the date Julia turned 1 year old!
10 lbs 3 oz and 24 inches - Julia's measurements at one year
10% - the number of babies born with trisomy 18 who survive to one year. Yay, Julia!
5000+ - the number of photos we have of Julia

The big, big unknown number was the number of days we would have with her. I counted everyday as an accomplishment, but a small voice would sometimes pop up and remind me that each day together brought us closer to the day she would leave us. I tried hard to push those thoughts away and focus on the present. Every single day really was a gift!

12 - the number of birthday cakes and birthday songs we sang to celebrate each month
382 - the number of days we were blessed with Julia on earth
12/16/11 - the date we lost our precious girl

Infinity - how much we love and miss our Julia cannot be measured!

And speaking of numbers...happy 15 months to our sweet girl...

Saturday, February 25, 2012

Sweet Face


How I miss this face...

2/25/2011

2/25/2011


Thursday, February 23, 2012

Word Collage



Wednesday, February 22, 2012

From Sydney



When I first saw Julia, I looked at her and smiled. ''She's cute'' is the first thing I said. I looked at her, my baby   sister, finally, wrapped in a pink blanket! Oh, how adorable she was! As she grew, she got pretty heavy.(At least to me she was.) Her eyes widened. Julia also got bigger of course. I thought her eyes were greenish brown later on. After her 1 year old birthday,I thought all those possibilities, the bad ones, were over. Little did I know, I was wrong. I feel like it's just been so long! Julia is Julia. She loves to touch bumpy stuff like mini pretzels,bracelets, and necklaces. She loves to snuggle! She does big hilarious stretches! When she sneezes, she puts her arm in front of her and then wipes her face and smiles. Boy, she sure likes a bath! Isaac and I both fight over who should pick out Julia's clothes. I love Julia!

Thanks to Sydney for sharing these thoughts and memories. Both of my girls are one in a million.  

Monday, February 20, 2012

Dancing in the Rain




Last summer when Julia was 6 months old we made the decision to stop hospice care. We wanted to focus -- and we wanted everyone else to focus -- on her life and not on the end of her life. That was a powerful transition for us. We were already celebrating and treasuring every day we had with Julia, and this decision meant that we were moving forward as a family with Julia a valuable and real member of our family. Let me back up a moment and add that after Julia was born we knew that we wanted another baby. Not to replace Julia-- she is absolutely irreplaceable. But I knew there would be loss one day and that another baby would go a long way in helping us heal. Julia's first 6 months kept us guessing so much that the thought of adding to our family was overwhelming. She had a good summer, though, and we seemed to get into a routine of sorts. As she approached 9 months, we decided that we were ready to consider another child. We wanted a sibling not just for Sydney and Isaac, but for Julia as well. I had already cared for a baby in the newborn stage for months on end. I felt confident that I could manage Julia and a new little one at home. Who needs sleep, right? Then in September we found out that we were expecting! We were cautiously happy and overwhelmingly anxious. I told Julia right away that she would be a big sister! :) We also let Julia "tell" Sydney and Isaac several weeks later. We used a sign that read "I'm going to be a big sister!" and held it over Julia's head to tell her siblings the great news. As crazy as this decision probably seemed to those around us, to us it is the epitome of "dancing in the rain."  Today this decision and this baby are a large part (along with Syd and Isaac) of what keeps us going. A new baby will not erase the sadness and grief that we feel without Julia, but I love knowing that Julia's life will always be linked with the life of her little brother. And she will always be our third child.

We love you and treasure you always, Julia!




Tuesday, February 14, 2012

Valentines Day 2012









Our Sweetest Valentine

Valentines Day 2011 in pictures...













Sweeter than chocolate. Prettier than roses. More precious than diamonds.
We carry your heart in our hearts. We love you forever, our sweetest Valentine!


Sunday, February 12, 2012

Valentine's Craft

For Valentine's Day last year the kids and I made fingerprint hearts.  We used stamp ink from a craft store. For Sydney and Isaac, we used the index finger and made two  prints which together made a heart.  Julia's fingers were so tiny that we used her big toe instead.  As tightly as Julia liked to keep her hands closed, her toes were also much easier to print! I am thankful to have this and so many other precious keepsakes. Thanks to my kids for putting up with all of the craft projects and photo sessions that I ask you to do.


Friday, February 10, 2012

What to Expect...



...when you're expecting a baby after a loss. Hope. Tears. Anxiety. Joy. Life. We are blessed to announce that we are expecting our 4th child, a precious baby boy, in mid-May.  Please keep us in your thoughts and prayers as we travel down this familiar yet new path.  More on this journey to come...

Thursday, February 9, 2012

Julia's Heart



February 7-14 is officially designated as CHD Awareness Week.  CHD, or congenital heart defects, are the most common birth defects.  Heart defects are commonly associated with the three most common trisomies (Trisomy 21,18, and 13) but often occur without a related syndrome. When I was pregnant with Julia, a heart defect was found at our 21 week ultrasound and was the first indicator that something was wrong.  Later ultrasounds and echocardiograms revealed several more abnormalities.  Julia's particular heart defect, or series of heart defects, was rare and would be considered life-threatening even without a chromosomal disorder. I thought I would try to explain her various heart issues since it is CHD Awareness Week.

Definitions* of Julia's Various Heart Defects: 
VSD: A Ventricular Septal Defect (VSD) is a hole in the wall separating the two lower chambers of the heart. If the hole is small, open heart surgery is not always required. The hole may close on its own or may be patched through catheterization. If the hole is large, open heart surgery is required and is usually performed in the first year of life. This is the most common congenital heart defect. 

ASD: An Atrial Septal Defect (ASD) is a hole in the wall separating the two upper chambers of the heart.

Coarctation of the aorta: A narrowing of the major artery (the aorta) that carries blood to the body.

PDAA Patent Ductus Arteriosis is an unclosed hole in the aorta. This hole usually closes soon after birth.  Julia's remained open throughout her life and was a blessing in that it lessened the effects of the coarctation.

Overriding aorta: The major artery (aorta) is located usually located over the left ventricle to carry fully oxygenated blood to the body. With an overriding aorta, the aorta is located partially over the right ventricle instead of over the left ventricle. This means the blood leaving the heart will come partially from both chambers and not be fully oxygenated. In Julia's case, this helped compensate for her hypoplastic left ventricle. 

Hypoplastic left ventricle: An underdeveloped left lower chamber of the heart. This was Julia's most severe defect.  Because of her large VSD and PDA and overriding aorta, Julia's right ventricle managed to do the work of both ventricles. The surgeries required to address this defect are complex and difficult even in a child with normal chromosomes. The single ventricle repair surgeries have not been performed in children with trisomy 18.
*From www.americanheart.org 

With all of this going on plus the unknown effects of trisomy 18 on Julia's respiratory system at birth, it is easy to see why her docs thought she would live only a few days.  Somehow, though, her heart managed to find its own balance. Her oxygen saturation levels were lower than what is normal, but her body did not feel a lack of oxygen (no ischemia on multiple electrocardiograms). Over time, her heart worked so hard that it caused the pressure in her lungs to increase.  This combination made each of her colds/respiratory viruses so difficult for her.  She fought so hard.

We are so thankful that her beautiful little complicated heart gave us a whole year with her. 

Wednesday, February 8, 2012

All in Pink

Julia, 2/8/2011


These pictures were taken a year ago today.  We discovered that Julia liked laying on Sydney's giant pink bean bag.  We could prop her up comfortably so she could look around. It was also a good place for her to nap. Of course when I saw how cute she looked sitting there, I had to take a "few" photos! Isaac was my photography assistant that day and his hand can be seen in the picture below reaching out to touch Julia's cheek. This was his special way of showing affection to her when she was still tiny.  He would lovingly reach out and touch her cheek so gently and talk to her in his baby voice.  It was the sweetest thing...



A Wave

This week there have been several losses in the Trisomy community, and several more are fighting illnesses or undergoing major surgeries. My heart is truly broken for the families of Caitlyn, Alexandria, Jovie, Grayson, and Mohamed as they mourn. I don't know why these things seem to happen in waves. The same was true back in late August when several beloved children with t18 passed away, and then sweet Lilly went to heaven just 12 hours before Julia, and little Madeline not long after. I feel the grief of these families as if it were my own. Yesterday the feeling of helplessness that I have felt so often since losing Julia was overwhelming as I learned about three year old Caitlyn's passing. (She developed RSV that progressed rapidly over a couple of days.) I found myself unable to concentrate on anything. Even though this is not about me, I can't stop thinking about Caitlyn's mom. She fought so hard for more than three years for her girl. She was her biggest advocate. She made sure Caitlyn had heart surgery. She has been the sole caretaker while her husband has been deployed. She did everything for her daughter. As empty as my days feel without Julia after a full year, I have a small sense of what Caitlyn's mom feels after three years. It is devastating. It is crushing. It is beyond sad. It is hard. As another mom of a t18 angel said, we don't move on. Instead, we carry on, keeping our little ones very close...always.