Faces of a Well-Loved Girl

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...

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.

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.

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.

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.