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

Tuesday, August 30, 2011

9 Months



Happy 9 months to Julia!! Nine months ago I didn't sleep a wink watching the heart rate monitor. Nine months ago the nurses wheeled me in for a c-section, terrified but somewhat relieved this day had come. Nine months ago I did not know your diagnosis but I knew life for you would be a struggle. Nine months ago you were delivered via c-section and quickly whisked away for evaluation. Nine months ago I glimpsed your tiny little beautiful eyes as they wheeled you past me on your way to the nicu. Nine months ago I was in recovery and too weak and sick to make it to the nicu to see you. Nine months ago your daddy stayed with you while I could not be there. Nine months ago we awaited the news of your genetic tests and your ECHO. And, nine months ago I received the most unexpected blessing. Nine months ago the miracle of you came into this world. Nine months ago I became a mommy of three amazing kids.
Today I celebrate your 9 month birthday as a huge milestone. Instead of simply celebrating the day of your birth, I celebrate you and this day and the 274 days since you were born. Thank you for continuing to surprise us daily. Thank you for letting us love you! Happy 9 month birthday, dear one!

Saturday, August 27, 2011

Firsts

With Julia, the normal baby list of "firsts" during the first year does not really apply. We have experienced a few of those like first bath, first smile, first sleep through the night (just kidding! We wish!), and first cereal (in with her formula). Others such as first laugh, first roll over, first time sitting alone, standing, cruising, walking, talking -- some of those may happen on a delayed timeline and others may not apply. We have accepted that Julia's list of firsts will be different from Sydney's and Isaac's. Julia has had a very unique week of firsts that I think must be included. On Tuesday she experienced her first earthquake. For the east coast it was a significant quake. It was my first one, too. And today we are waiting for her first hurricane. Two big events in one week! My older kids don't have anything like that in their baby books! :)

Wednesday, August 24, 2011

Shaken

Yes, there was an earthquake here yesterday, and it was scary. But, it was over quickly and if not for the local news we would have almost forgotten. I wish I could say the same for Julia's cardiology appointment this week. It's not like we expected good news. We were just hopeful that things would be better than they are. Her last appointment with cardiology was 6 months ago. Since then, her lung pressure has increased, her left ventricle has continued to atrophy, and her oxygen sats in her hands and feet have decreased. Her heart has 4 chambers but functions as if there were three. So the blood pumped through her body is a mix of oxygenated and unoxygenated blood. At any given moment she could be getting a lot or a little oxygen moving through her veins. My sweet baby. How I want to make it better. This cardiologist does not see a surgical intervention that would help. We will get a second opinion, but we know her heart has a lot of problems. It's not just a hole here or there. The anatomy is completely off. Somehow, though, it still works. As disappointing as the appointment was, we have to focus on the fact that she's still here with us. Some wise words I read after she was born were "don't be afraid to love her." We do. So much.

Sunday, August 21, 2011

A Hipstamatic Week


These are random photos from our week taken with various Hipstamatic lenses on an iPhone. Even though this week definitely had its scary moments, we also shared lots of smiles. Their smiles are so good for my soul. And yes, that is Captain America.

Friday, August 19, 2011

Time: In and Out

This week marks another milestone. Julia is 37 weeks old, which means she has been here as long as I was pregnant with her. I know it may not sound like much, but when we were told we would only have days with her, 37 weeks seems like a long time! Although she's still a tiny sweet pea, we have noticed a lot of changes in her in the past 37 weeks. She has gained a few pounds and inches, she has a lot more hair, she smiles a lot, she eats a lot more, she looks around and seems to pay attention to things, she loves to hear Sydney talk, she wears bigger clothes and diapers (barely), she cries less in the car, she plays with her hands, she comforts herself, she makes different sounds, she can support her head a little bit at a time. She's taking her time, but she is moving forward and learning new things. And she continues to amaze us and everyone who meets her. Happy 37 weeks, my sweet Julia.

Wednesday, August 17, 2011

Scary Morning

Yesterday was an occupational therapy day for Julia. At her last appointment she was just not into it. All of the moving around and repositioning and a new therapist was just too much. Yesterday's session seemed to go well as Julia was very alert and cooperative. At the end of the session Julia was finishing a bottle when she started coughing and gagging. Its imoortant to know that she very rarely spits up. In 8.5 months, she has spit up maybe 5 times total. I don't know exactly what happened yesterday but she spit everything up and just could not breathe. It was terrifying. Her color changed, the therapist wanted to call 911, and then suddenly she started crying and breathing and pinking up. The whole episode lasted only a few moments but they were loooong moments. I remained calm during the episode but felt shaken for the rest of the day. Julia rested and ate more without incident. She is such a little fighter. And I am thankful she has strong reflexes. I pray this NEVER happens again.

Tuesday, August 16, 2011

A Kind Doctor

On Monday we had our first appointment with the geneticist. This geneticist diagnosed Julia after birth but had not seen her since then. Since we changed our approach to Julia's care this summer this is one of many appointments we have coming up. I was very apprehensive before the appointment not knowing if this doc would be supportive or not. We were pleasantly surprised and more than a little relieved at how things went. This doctor marveled at the miracle that is Julia (my words -- hers were more along the lines of "extremely rare" and "unexpected"). After asking us tons of questions and examining Julia, the doc's recommendations going forward were the very same as our plans. It is encouraging to have an ally in her as we see various other specialists in search of surgeries and therapies that some may not see as necessary because of Julia's diagnosis. Some friends in the trisomy community have recently experienced a brutal appointment with a doctor who just could not see past the diagnosis enough to care for the living child in front of him. Walking this road is difficult enough without having to protect our children from the doctors who should be helping. Next up for us is the cardiologist in a few days. I am nervous about this one. The last time we saw him he did not think Julia was a surgical candidate. She was 2 months old then. Now she is 8.5 months and we are hoping for a more open evaluation. We already have an appointment scheduled with a second cardiologist from another hospital, so even if this one will not consider surgery maybe the next one will. Wish us luck!

Monday, August 15, 2011

Faces of a Well-Loved Girl



Thursday, August 11, 2011

A Day in the Life

Life with any new baby requires a new normal. Before Julia we experienced "normal" new normals when we had Sydney and Isaac. With Julia, our new normal is obviously different. And it changes. So, here is an example of a day in our current normal.

1:30 AM Marc and Julia come upstairs to sleep (marc gives me a couple hours head start so I can have a little cushion in case Julia is up for hours at night.)
2:30 AM Julia wakes to eat
3:30 AM Julia back to sleep
6:30 AM M to work
7:00 AM Julia wakes to eat
7:30 AM Sydney and Isaac wake up
8:00 AM Julia back to sleep
8:30 AM breakfast for S&I
10:00 AM Julia wakes up, takes a bath, gets dressed
10:30 AM Julia eats
11:00 AM my shower time
12:00 PM load everyone into the van, grab lunch on the go. Julia upset, park in parking lot to calm her
1:00 PM drop off Isaac at a friend's house for a playdate, Julia still fussy. Hoping she will fall asleep in the car
1:30 PM run errands with Sydney and Julia. Feed Julia in the car.
3:00 PM arrive home. Julia is very tired, finally falls asleep in my arms. Successful transfer to pack and play bed.
3:30 PM Isaac gets home.
4:30 PM I take a nap
5:00 PM Julia wakes up, eats. Yay for her 2 hr nap!
5:30 PM Marc gets home.
6:30 PM Dinner
7:30 PM Julia smiles lots at Syd and Isaac. Julia eats.
7:50 PM Julia pees on daddy :)
8:00 PM S&I get ready for bed/bedtime
8:30 PM Julia falls asleep, but it's a restless sleep, and I'm holding her.
8:50 PM j awake again.
9:00 PM M is tired and heads to bed
9:30 PM J back to sleep
10:30 PM J wakes up and eats.
11:15 PM J to sleep. I will soon follow.

The most significant thing about today is that we all left the house at the same time. Sometimes Julia will fall asleep in the car, but other times, like today, she fusses when she is not being held. Once held she calms immediately.
The other thing I notice looking at today's events is that it's not such an unusual day for anyone with a 1-2 month old. Julia is 8 months old but functionally still at 2 months or so. Exercises like this help me see that we are doing okay. The mental and emotional aspects of living with a child with trisomy 18 (or any special needs child) can't be well-represented in my list and can vary from day to day. Today, though, we did okay. Yes, it wore me out to have all the kids out and about for a few hours, but we will get better at it. Things are already so much better than they were 6 months ago. One day at a time...

Tuesday, August 9, 2011

A Year Ago and Today

I thought today would be much more emotional, much more difficult. I thought my mind would be driven back to that day, one year ago, when the perinatologist first found a heart and kidney abnormality in Julia and first uttered the words "likely chromosomal abnormality." (Of course at that point he thought it would be Down Syndrome.) The date has obviously crossed my mind, but thankfully my thoughts have been more consumed by the everyday care of three children, including one very special infant. After such a difficult year (giant understatement), I mostly feel grateful to have Julia here with me.
Today Julia and I had an appointment with an ENT doc and an audiologist. She never had a newborn hearing screen in the chaos surrounding her diagnosis, so I thought we'd better catch up. The ENT doc was great-- so kind and non judgmental, and also from Alabama. The audiologist was equally kind. Julia's ear canal is, as we would expect, tiny. (All of her is tiny!) When we went to perform the hearing screen, Julia's noisy breathing (just like big sister's) got in the way. Usually the back up plan would be a sedated hearing test but because of her cardiac status Julia is not a good candidate for anesthesia. So we will try the hearing screen again, perhaps during nap time. Then we will see how things go with the cardio docs and their plans before making more ENT plans.
I could easily reflect on all of the ways our lives have changed since August 9, 2010. The most important change, though, is still the addition of our daughter. Our miracle girl. And that, for today, is reflection enough.

Monday, August 8, 2011

Newbie



I am very new to blogging. Before I was pregnant with Julia I never "followed" anyone's blog. Sometimes I would check in with the few friends I knew in real life who blogged but it was never more than that. After Julia's birth and diagnosis, I turned daily to the blogosphere for comfort, encouragement, perspective, and understanding. I don't know personally anyone who has been through something like this, so I found many bloggers who are brave enough to share their journey through difficult life situations whether it be loss of a child or spouse, a poor prenatal diagnosis, a child with special needs, a difficult illness, or a child with trisomy 18. Through their experiences and reflections I found a community of sorts where one can freely share sadness and joy, frustration and celebration, grief and healing. Blogging through a difficult diagnosis or loss seems to be a very helpful way to process grief and struggles. I hope to find it helpful in that way, too, and I also want to share my journey with others in similar situations and pay forward what I received and continue to receive from so many.


Saturday, August 6, 2011

July Beach Photos



Quality of Life

The term "quality of life" doesn't sound threatening, right? As a pharmacist I can tell you that many medications are covered by insurance just because they can improve one's quality of life. That's a whole other discussion, but I bring it up to say that I am familiar with the term as it is used in medical decision making. However, when it comes to children with conditions such as Trisomy 18 or 13, the quality of life position is often used to prohibit therapies. The argument that because our trisomy children may never walk, talk, or function independently they should be denied life saving therapies (such as heart surgery) is an unacceptable one. Our children are loved and they can show love, too, in their smiles and laughter, in the recognition in their eyes, and in their reaching arms. Such a person is hardly a "vegetable" unworthy of vital medicine. The fact that only 10% of t18 kids survive past one year does not change the more important and compelling fact that this 10% represents living children! Approximately 1100 babies with t18 are born each year, meaning that about the number of children living with t18 increases each year by about 110!
A good "quality of life" is very subjective. Ask a mother in the US and then one in Haiti or Afghanistan or Sudan. The overall quality of life in these places would vary greatly and would be directly related to geographic location and access to food, water, and healthcare. From our wealthy US households we may struggle to understand how a mother of four in poverty stricken Haiti could be happy. This may be similar to a physician in the US using clinical judgment trying to understand how families with trisomy kids can be happy. We must seek better understanding. Our daughter is here and living despite great odds. It shouldn't be so challenging to find physicians (healers!) to support the life that she has.


Tuesday, August 2, 2011

Reaching Out

We are not alone. There are many other families living with trisomy 18 scattered around the country but until recently we had little to no contact with any of these families. I finally found the blog of a mom with a 2 year old precious girl with t18 and an older and younger child. I emailed this mom and we began communicating. She has been very patient in answering my questions and helping me to see things in a better light. She also "introduced" me to some other t18 moms who then led me to some online support groups. These groups have been an amazing source of information and encouragement so far. I can't believe it took so long to find them! While on one of the boards one day I found a mom who also lives in Virginia and has an ELEVEN YEAR OLD daughter with t18! This family lives a few hours away but happened to be in our area for a sports tournament this weekend. I immediately invited them over for a visit and they were gracious in coming. Their youngest daughter was not with them but we were thrilled to meet this strong mom and her 2 great teenagers. They shared their story and it is definitely one with a lot of hope, joy, and love in addition to the challenges. The dedication and strength I have found in these fellow t18 moms is infectious, if that's possible. I am still overwhelmed much of the time with all of the what ifs and challenges ahead, but we are not alone.