The Scar

TheScar

I have to be honest. Before Emmy had heart surgery, I was really worried about the scar. Baby skin is so pure and soft. It symbolizes newness and promise and possibility. Whenever they show diaper commercials on tv, they zoom in on the baby’s chubby, soft, flawless skin.

Babies aren’t hardened adults with tough skin yet. They don’t know about the world and its difficulties. So the idea of cutting into Emmy’s gentle skin just slayed me.

Plus, I’m squeamish. I can faint at the sight of blood or anything resembling an open wound. When I was in middle school, I cut my finger in Woodshop class. I looked down at the blood and fainted, falling backwards and hitting my head on a metal filing cabinet. I was taken to the emergency room for the major gash in the back of my head, not the tiny cut on my finger.

So I was nervous. But I was desperate to be there for Emmy and not let my embarrassing squeamishness get in the way.

When Emmy first came home from the hospital, I was so happy to have her home that I felt like I shouldn’t care about the scar. My head told me to just be thankful that she was alive. But every time I glanced at the scar, I thought I was going to faint. From what I’ve seen of other kids, Emmy’s scar is particularly noticeable. Her surgery was back in May, and the scar still looks reddish pink. (Don’t worry — she doesn’t have an infection.) I think it’s because she was on life support for almost a week, and her chest remained open during that time. It didn’t heal as cleanly and quickly as some other scars I’ve seen.

Also, when she first came home, every time I looked at the scar, it brought back a rush of emotions. It reminded of the tough time she had after heart surgery and the fact that she almost didn’t make it. I felt like I was reliving it again and again and again. Those feelings have subsided a bit with time, although I can still go back to that hospital room in my mind with a word or a smell or the sight of an ID badge that says “Parent Pass.”

Emmy, on the other hand, seems quite comfortable with her scar! She points to it and say “boo boo.” She lifts up her shirt for people to see. One woman remarked that she seems proud of it. I hope she is. She sure earned it.

I want her to be proud of it as she gets older too. When we’re young, scars can be a badge of honor. And later in life, we can get more self-conscious. I have a scar over my eye from when I fell on my lunchbox as a kid. I never thought twice about it until I got older and started to critically examine my face in the mirror. “That needs to be plucked…that doesn’t look good…and, oh jeez, that scar…”

I hope I can continue to foster Emmy’s pride in her scar. A nurse recently said that she doesn’t like the term “congenital heart defect” because it attaches a negative connotation to something that kids should actually be proud of. They don’t have the scar because they’re defective. They have it because they are downright amazing.

I joined a group on Facebook called “Mended Little Hearts” for families of children with Congenital Heart Defects. Every time they post a picture of a little boy or girl and I see that scar peeking out from the top of a shirt, I feel an instant connection with a stranger.

“Emmy has that too,” I think.

The scar didn’t mar her skin like I feared it would. It didn’t take away from her beautiful, soft, gentle baby self. She still is my snuggly sweet little girl, full of promise and possibility. And now she has a badge of courage too.

As Long As It’s Healthy

AsLongAsItsHealthy

I was at the salon the other day, making casual conversation with the hair stylist. She was asking how many kids I have and if I want another. I don’t normally venture into the Emmy story unless I know someone pretty well so I said, in a general way, “I have two kids, and I’d love to have another.”

She responded, “Do you want a boy or a girl? Though, I guess it doesn’t matter, right? As long as it’s healthy.”

That phrase stopped me in my tracks. She kept asking more questions, but I was still on the “as long as it’s healthy” statement, turning it over and over in my mind.

I used to think the same thing. When I was pregnant with both of my girls, I prayed every single night for a healthy baby. That was, in fact, my only wish. I was terrified of having a baby that wasn’t healthy.

And then, five weeks after giving birth to Emmy, we found out that she has Williams syndrome. (They don’t test for Williams syndrome during general pregnancy screenings because it is so rare.) In my mind, my worst nightmare had come true. I wondered what I had done in life to deserve such a thing. I had been a good person, right? It felt like a punishment. I racked my brain trying to figure out what I had done in my past to bring this diagnosis upon my entire family.

Those feelings were so real back then–so painful. And today, I can’t even put myself into that same mindset if I tried. I love this kid so much, and she has brought such incredible joy to my life. The way she crinkles her nose, and gulps down her milk (“glug glug glug”), and reaches for her favorite book, and gets her red shoes when she wants to go outside, and drops her toys into an empty bathtub for us to find later, and giddily throws balls to our dog, and says “Charlotte.” Even though I didn’t realize it at the time, this was the baby that I prayed for.

Really, I can’t imagine that any pregnant woman wishes for an unhealthy baby. So it seems like a natural prayer. Who wouldn’t want a healthy baby?

But let’s look at the other side of that coin. What happens if the baby is unhealthy? Then what? Do we send it back? Do we ask for another? The “as long as it’s healthy” statement doesn’t allow for the other side of that coin.

Because what if it isn’t healthy?

Perhaps, instead of praying for a healthy baby, I should’ve asked “Please give me an open heart to love my child fully, no matter who he/she is” or “Please give me the ability to see how my child fits in perfectly with our family.”

Yes, I’d like to have another baby. At this point, I’m actually much more worried about carrying the baby than I am about who the baby will be.

I, too, was born with a birth defect but, surprisingly, I didn’t find out until I was thirty years old and pregnant for the first time. An ultrasound revealed that I have a bicornuate uterus, which means it’s heart shaped. It sounds lovely, but it can be very problematic. I also have a secondary issue with my uterus which resulted from my first c-section.

So my mind hasn’t even gone down the “I hope it’s healthy” road yet. I’m still wondering if my own body will be able to hold strong.

But if I were to get pregnant again, I hope I won’t obsess about the health of my baby for nine months, as I’ve done twice before.

I’ve learned that health isn’t everything. It’s the whole picture that matters more.

Our Emmy turns two years old tomorrow! I can’t wait to see her opening the mountain of Elmo presents.

I spoiled her this year. She deserves it.

Teresa B

Teresa

Photo credit: The Bartlinski’s blog, Our Place Called Home

I can’t stop thinking about this little girl.

Teresa B just went in to the Operating Room at the Children’s Hospital of Pennsylvania for another heart surgery. She had surgery a few days ago but then went into cardiac arrest for 30 minutes. She’s been on ECMO, which is the same life support machine Emmy was on, ever since.

I’ve been following her story for the past week, when someone from our Williams syndrome community posted it on Facebook.

Teresa’s story is different from ours, but it brings me right back to that hospital room. It’s as if I’m sitting in front of the life support machine all over again, praying for Emmy to come back to us.

There are days when I practically forget that Emmy was on life support a few weeks ago. And there are days when I am right back there — watching the blood pump through the tubes coming out of her chest.

Here is Teresa’s story. Please pray for this sweet little girl as she undergoes surgery right now.

(This blog has music, so you may want to mute.)

http://ourplacecalledhome.blogspot.com

She’s Home!

ShesHome

After spending 22 days in the hospital, Emmy is home!!

The best part is holding her whenever I want. When she was in the hospital, I would feel uneasy holding her. She was covered in wires, and I didn’t want something to come loose. Every time I heard a beep, I had a mini-panic attack.

One day, our nurse gently handed her to me, and it literally looked as if she were putting a bunch of wires in my arms. I had to search to find Emmy!

Now, I can scoop her up without worrying that I’m pulling out some type of important oxygen-thingie (to use a technical term).

Emmy is a totally different kid from the day she went in for surgery. It’s really amazing how much she’s changed!

First of all, she’s bigger. Her teeth are bigger, her hair is longer, and her face looks more like a toddler.

Second, her muscles have gotten weak from lying in a hospital bed, so she can’t stand or walk yet. When she tries to get up, her sea legs go in all directions. We’ll meet with her physical therapist soon to get her moving again.

Third, and most surprisingly, her vocabulary has expanded! I didn’t see this one coming at all. She’s throwing out words that she’s never said before, like “tree” and “house.” And she’s much more communicative about her wants and needs. The cutest word she’s picked up is “Yay!” When I give her something she wants, she thinks about it for a second, and then her little voice happily says “Yaaaay!”

Fourth, and most importantly, the original problem she had with her heart seems to be fixed, thanks to a wonderful surgical team at the hospital.

And, of course, there’s someone else who is over-the-moon to have her sister back home:

ShesHome2

Yaaaay!

Slow and Steady

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Emmy’s progress has been slow and steady. I had this image of the doctors removing the ventilator and Emmy jumping into my lap and saying, “Hi Mom!” It hasn’t been like that. It’s been much, much slower. But we’re moving in the right direction.

When Emmy was first diagnosed, I thought a lot about the developmental issues she would face. I thought about schoolwork and bullying and driving and independent living. I didn’t focus on the medical aspect of Williams syndrome. It seemed more distant. I could easily understand schoolwork and bullying. I couldn’t wrap my head around cardiovascular issues and hypercalcemia.

What has happened over the past few weeks has made the medical issues very real in my mind.

Just last night, our tight-knit Williams syndrome community lost a beautiful 3 year old boy who had heart surgery on May 23. I am heartbroken for that family. It physically hurts.

People with Williams syndrome have a special smile. I see that little boy’s smile in my mind, and it will stay with me forever.

 

 

 

Two Weeks

TwoWeeks

It was exactly two weeks ago that we brought Emmy in for heart surgery. The surgery went beautifully, by all reports, and she was brought up to the Pediatric Intensive Care Unit to recover. We were expecting to be in and out of the hospital in about 4-5 days.

It was in the recovery room that she suddenly went into cardiac arrest — twice. People with Williams syndrome can have complications during and after surgery (problems with anesthesia, blood pressure changes, etc), but we thought we covered all of our bases and did all of our research. We thought we were beyond prepared. We thought all of the doctors with whom we spoke (prior to surgery) were beyond prepared. It turns out that, sometimes, parents can only control so much.

What happened next, though, was miraculous. The doctors and nurses saved her life. They acted quickly and smartly. They turned the recovery room into an operating room. They opened her chest back up and put her on a bypass machine called ECMO. At that time, Emmy’s heart wasn’t beating on its own. The machine was doing all the work.

I will be forever indebted to the people who saved her life that day. I am also indebted to the wonderful doctors and nurses who cared for her over the next two weeks. And I’m indebted to those to offered us prayers and support through my blog and Facebook and texts and emails and voicemails. I’m sorry that I haven’t responded to everyone yet! I’m still kind of in a fog.

Over the past two weeks, Emmy slowly recovered. One by one, the machines were taken off. It seemed to take forever. Two weeks felt like two years.

But we got our reward last night when Emmy opened her eyes for the first time in two weeks.

And, today, a music therapist came to visit — to see if we could pull Emmy out of her shell a bit more. Emmy still has a c-pap in her nose to help her lungs. She hasn’t spoken a word, though she’s tried. Her voice is very small and sounds like a wheeze. She hasn’t smiled yet.

But when the therapist started playing the guitar, Emmy weakly reached for maracas. She gingerly took one in each hand. And, with two little hands that have barely moved in two weeks, she shook the maracas to the song.

“Hello Emmy,” the therapist sang. “I want to say hello.”

This Part is Hard

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Compared to where we were last week, Emmy is in much better shape. She is making slow but steady progress, and every little win brings us one step closer to holding her.

She was on a paralytic, which didn’t allow her to move, since May 16. It pained me to see her on the paralytic because it seemed unnatural for a toddler to be still. I wanted her to MOVE. I kept asking, “When are they going to take it off??”

Well, they just took her off the paralytic, and she’s moving. It’s a good sign. She’s closer to coming home. But, wow, this part is hard. She has tubes down her throat and up her nose so, when she tries to make a sound, nothing comes out. She is sedated with morphine, but she still reacts to noise and touch. She has her eyes closed, and she opens her little mouth. Her forehead strains. She looks upset and, perhaps, in pain. The nurses have to suction old blood out of her lungs. And when they suction, Emmy looks so incredibly uncomfortable. She squirms away from the suction and seems to be saying “No no no,” but there is no sound. This is hard.

The nurses are excellent, and I know they’re treating her with such care. They give her baths in bed and even put little clips in her hair, which make me smile. So I know they’re gentle and wonderful with her. But I also know that when I see my kids suffer in any way, I suffer. I can’t even watch when they suction her. I have to put my head down.

There is a woman down the hall who has been living here with her daughter for 6 months. I have friends who have lived here for 1, 2, and 3 months. I’m in awe of the strong people who live and have lived on this floor.

This energy here is mixed. In one room, people are celebrating. In another, they are crying. Ten days ago, I was the mom kneeling on the floor outside her daughter’s room weeping and pleading and praying. Today I’m the nervous mom who doesn’t like to see a suction. You swing back and forth. One day you’re depressed and the next you’re panicking and the next you’re feeling positive.

At this point, I see the door. I want out. I am desperate for us to be able to lift the sedation, take out the tubes, and interact with Emmy. I want to see if she remembers me. I think she does because when she hears my voice, she starts moving. Her forehead strains. And I can almost hear her say, “Save me, mom. This hurts. Come save me.”

I’m trying, sweetie. I’m trying.