Monthly Archives: May 2013

Two Weeks

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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.

To See or Not To See

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Emmy is off bypass! Her heart is beating on its own!!!!!

Yesterday, it was determined that a surgical team would try and take her off bypass because she was bleeding. We were incredibly nervous. Last time she came off bypass, we ended up with 2 cardiac arrests and a very, very tenuous situation. One day, I’ll write about exactly what happened, but I can’t even go back there in my mind right now. I’ll put it this way — we almost lost her.

This time, she tolerated the move off bypass very nicely, and we had a beautiful night next to Emmy with her heart beating away at nice steady pace. Today, she is still sedated, and she is on a respirator to help her lungs. Overall, she continues to have steady progress in the right direction!

I’ve experienced many amazing things over the past week and, again, I’ll write about those at a later date. I’m still in a hospital room with her, and it’s difficult for me to really reflect on anything until we are home safe and sound.

But I’ll tell you a story from yesterday…

It was Charlotte’s 4th birthday, and her wish was to see her sister. Yikes. We hadn’t planned on having her see Emmy from the beginning of this journey because we were only supposed to spend a couple days here. But with the complications, Emmy’s stay got longer and longer. And Charlotte got more and more curious.

“Why can’t I see her?”

“Just send me a picture.”

“Put her on FaceTime.”

“I know she’s sleeping. I still want to see her.”

My gut told me that it was time she saw Emmy. We seemed to be doing more harm with all the secrets and avoidance. Charlotte has had a tough time the past couple days. She’s a girl who loves routine, so all the craziness has really had an affect on her. We tried to shelter her from it, but kids FEEL things. Probably better than adults.

Even though my gut told me to bring her in to see Emmy, my mind flashed back to a few days ago when my sister came to visit. Upon seeing Emmy, my sister fainted! I must tell you — it is difficult to see Emmy like this. It isn’t glamorous by any means. But here I was thinking, if my 28 year old sister fainted, did I really want to bring a 4 year old in to this situation?

Turns out that there’s a Child Life team at the hospital, and they’re excellent. They prepare kids for seeing their siblings in this state.

So for Charlotte’s birthday wish, I brought her to the hospital to see her sister. The wonderful woman from Child Life helped ease Charlotte into it. Before we went in, she gently asked questions about how Charlotte was feeling and described the contraptions that we would see in the room.

When we entered Emmy’s room, Charlotte’s eyes immediately went past all of the machines and landed straight on her sister’s sweet face. She was quiet, taking it all in.

After a few minutes, the Child Life specialist asked, “I see you’re looking at something, Charlotte. Do you want to tell me what you’re looking at?”

Charlotte nodded slowly and then said, “My baby sister Emmy.”

She barely noticed all the machines. She only saw her sister. It was beautiful.

We went into the waiting room to give Charlotte her birthday presents, and throughout the afternoon she kept asking to return to Emmy’s room — to see her baby sister.

Hope and Faith

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I am so touched by how many people read and forwarded my last post about Emmy’s complications after heart surgery. I felt support from everywhere. In my scariest and darkest time, I was lifted up by others. I’ve been writing about the power of support for a few months now, and I had no idea how much that would become true after Emmy’s surgery.

I’ve felt that support so strongly as I’ve sat next to Emmy in this hospital room. She’s sedated and on bypass, but I talk to her. I encourage her and cheer her on. I tell her about the people who are rooting for her. I am POSITIVE that she feels it too. Tomorrow they will test her heart a little more to see if it can withstand a gentle move off bypass, and I know I will continue to feel the faith all around.

I started this blog a few months ago and have been getting anywhere from 5 to about 50 visitors on an average day. The most I’ve ever gotten was about 108 visitors. I’m just happy to have 1 visitor!! I’m touched that people would come and check-in with my family, and writing is therapeutic for me.

My last post, in which I asked for support following Emmy’s complications, was passed around from person to person to person. People wanted to help and pray and think good thoughts and offer me hope and faith from across towns and states and countries. It felt like everyone had my back when I needed it most.

That night, I checked to see how many people visited my blog. Even seeing 1 visitor would’ve boosted me up and made me feel like someone was cheering us on.

The number amazed me.

1,079 visitors came to my blog that day!

And they came from many countries — Chile, Turkey, Malaysia, the UAE…

They came from everywhere.

That means that, all across the world, we want so desperately to connect with others–to be there for people in need. It brought tears to my eyes and love to my heart.

It brought love to Emmy’s heart too. I could FEEL it. Just when we needed you, you were right there. From my deepest place of gratitude, thank you.

With your help, I keep cheering her on. “GO EMMY GO!!!”

You can do it, Emmy!!!

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This is Emmy before surgery yesterday — happy, laughing; playful.

By all reports, her surgery went beautifully, and we all breathed a nice sigh of relief. She looked amazing right off the operating table.

A few hours later, something happened. She had 2 cardiac arrests and her chest was opened up again by a team of surgeons — right in her recovery room.

She’s back on bypass now.

My friends, I have an incredible amount of faith that she can pull through. She is incredibly feisty. She wants to play with Charlotte, blow bubbles, see her therapists, read books, and snuggle with Elmo. She wants to be sitting on my lap, pulling at my nose and tugging on my curly hair.

Please pray for Emmy to have the strength to pull through this.

You can do it, Emmy!!!!!!!!!!!! Mommy loves you so much. Please feel that love and start that little heart beating again with a nice steady rhythm. Thump, thump, thump, thump…

By This Time Tomorrow

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ByThisTimeTomorrow

Emmy’s heart surgery is tomorrow. In one sense, I am SO ready for this to be over. In another sense, I am SO NOT ready for this.

Confession: I’m not as strong as you think I am.

I look around at the parents I know whose children who have had heart surgery, some with three and four heart surgeries behind them, and think, “I am nowhere near as strong as they are.” Even in adulthood, I still feel like a kid in many ways. I have a little bit of an immaturity and naivety that has stuck with me all this time. I kind of like it because it makes me feel young and goofy.

But now I’m being asked to step up to the plate and be a strong woman and mother for my family. It’s a tall order for someone who still feels like a kid inside.

I’m also very much aware of how Charlotte is going to feel over the next few days. We have wonderful friends and family who have generously offered to take care of her, and for that I am so grateful. But while half of my heart will be with Emmy, the other half will be with Charlotte. I hope that she will feel our love from far away and won’t feel like we’ve ditched her.

Over the past few weeks, we’ve tried so hard to keep things “normal” around here, for Charlotte’s sake. We’ve been trying hard to remain calm, positive, and playful while dealing with a heavy situation. We’ve read her some really good kiddie books about surgery. She has asked to read them over and over again–several times a day. She is fascinated by the idea of being in a hospital. She asks questions like, “How did Emmy get the boo boo on her heart?” and “Will I get it?” No, it’s not contagious, sweetie.

Even though I’ve tried to stay composed, I’ve been more anxious and nervous than usual. It’s inevitable, I guess. I just hope that thirty years from now, Charlotte won’t hold it against me. I imagine us sitting together on a therapist’s couch when it all comes out: “I hate you for not being a perfect, carefree mom in the week leading up to Emmy’s surgery!” Oh hello, Mommy Guilt, it’s you again!

I’ve also been feeling very uncomfortable with the fact that Emmy has no idea what’s about to happen to her tomorrow. She only knows a few words at this point, like “more” and “open.” The concept of “heart surgery” is not in her vocabulary. In some ways, it’s a good thing because she won’t be afraid. However, I also feel like I’m duping her. She’s happy as a clam and totally oblivious to the major surgery and recovery period that’s right around the corner.

I told my friend that I feel guilty for unintentionally “duping” Emmy into thinking that tomorrow is going to be a perfectly regular day, just like any other. My friend’s advice was to tell Emmy about the surgery–to put it out there even though she won’t understand.

So I sat her down, put my hand on my own chest, and said, “Emmy, listen to Mommy. You have a boo boo on your heart, and you’re going to go the hospital on Thursday to get it fixed. There are going to be nice doctors, and it might hurt a little afterwards. But you’re going to be just fine. Mommy and Daddy will be right there with you.”

She looked straight into my eyes. Then she put her hand on her chest and said “boo boo.” I’m so glad I shared that moment with her. I felt like she understood.

I hope I can get at least a few hours of sleep tonight.

I hope Emmy’s surgery and recovery go beautifully.

And I hope we all end up on the other side of this, stronger than I ever imagined.

Pre-Op

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This is a picture of Emmy at the hospital after 5 solid hours of pre-op. This picture was taken after a 1.5 hour echocardiogram, an EKG, a urine test, blood work, an X-ray, and a few consultations with various doctors.

If it were me, I would’ve been curled up in a ball whimpering and pleading to go home. Emmy, on the other hand, decided to run around the lobby for 25 minutes. As I ran after her, exhausted, I thought, “Kids are tough!”

When we drove to the hospital early this morning, I thought about the last time I was preparing for surgery. Back then, it was a c-section, and I couldn’t wait to meet my daughter. I was beyond giddy. Going to the hospital to have a baby is such a thrilling time. You don’t know who is inside of that belly, and you just can’t wait to see his or her little face.

Driving to the hospital for that same baby’s pre-op for heart surgery is a different feeling altogether. The excitement has vanished. In its place, are hearty doses of fear and anxiety.

“How did I get here?” I kept thinking.

It was a long, nerve-wracking day. I kept my eye on the clock, wanting to rush through it all.

And then I look back at that picture of Emmy who, after hours of testing, was dashing around the lobby. She was waving her hands over her head, saying “Hiiiiii” to anyone who looked her way.

And then I think back to our weekend when we watched this little girl, my oldest, run around happily. She knows that her sister has a “boo boo on her heart” and enthusiastically proclaimed that she would miss her when she goes to the hospital but would see her soon.

PreOp2

As much as I want to fast forward to the future, I am acutely aware of these fleeting moments in time.

I keep thinking, “I want this to be over.  I want this to be over.”

But if I keep rushing through the days leading up to surgery, I’m missing what’s right in front of me. There’s a sense of happiness and positivity radiating off my children, which I’d like to bottle and hold close to my heart.

One Week from Today

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In exactly one week, Emmy will have heart surgery. I’m still in denial. I keep waiting for the phone call where a doctor says, “Oh my goodness, I am so sorry for all the confusion! Emmy’s numbers were showing up backwards! Whoopsie.”

Or, when we go in for her pre-op on Monday, I’m expecting a nurse to say, “I have good news! The narrowing in Emmy’s aorta has completely disappeared. This kid is healthy as horse. Take her home, and we’ll see you…never!”

It probably won’t feel real until Emmy gets wheeled into the operating room and I’m left behind to obsessively stare at the clock.

There’s a chance that she might need a blood transfusion during or after surgery and, because we have the same blood type, I was able to give a directed donation earlier this week. Dan came with me and donated to the general population because he and Emmy aren’t a match.

The woman who worked at the blood bank was so unbelievably kind as she took down my information. I hadn’t told her who I was donating to because I didn’t want to cry, so I just acted nonchalant.

As she transferred my information onto the form for Emmy’s surgery, she saw her birthdate–July 2, 2011.

The woman looked back at me and, with tenderness in her voice said, “This is for a small child.”

I steeled my jaw, intent on not breaking down, and said, “It’s for my daughter.”

She was so kind and offered comforting words. As I was giving blood, she asked lots of questions about Emmy. It made me feel good to have support, even from someone I’d never met before.

After Dan and I gave blood, we sat down at the small snack table and made conversation. We dutifully drank our juice and ate salty pretzels.

All of a sudden, Dan’s face turned grey. His breathing got shallow, and his eyes weren’t focusing.

“Are you ok?” I asked, stunned.

“I’m…having…trouble…breathing,” he managed to get out.

I jumped up, still woozy from having just given blood, and hobbled over to the kind woman. I choked out, “My husband…”

She called out to her coworkers, and a swarm of people descended on him, putting ice packs on his neck and keeping his head down.

“This can’t be happening,” I thought, as I stood back from the crowd. My mind flashed to Emmy’s surgery. “This can’t be happening.”

The kind woman who took my blood looked over at my panicked face and said, “He’s going to be just fine.”

I didn’t believe her.

They put Dan on a stretcher with his feet in the air as I nervously looked on. It took him a solid fifteen minutes to regain his color. Finally, he climbed off the stretcher and came to sit back down with me.

“That was really scary,” I said.

“I don’t know what happened,” he replied.

Dan is a strong guy, which is why he is my rock. To see my rock go down left me feeling completely helpless.

We’ve had a stressful week trying to get our ducks in a row before surgery, and I think the weight of it all has taken its toll. As nervous as I am for surgery, I just want to get it over with so we can finally exhale.

Meant to Be

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It’s Williams Syndrome Awareness Month, so yesterday we met up with a bunch of other families for a beautiful walk to raise money and awareness.

We were at the same walk last year, which made me realize how much Emmy has grown. Last year, she was a baby, so we pushed her along in a stroller while she snoozed. I remember looking around at the other children who had Williams syndrome and just taking it all in–trying to figure out what my little girl would be like. I had read all the literature, but I still didn’t know what to expect. I still didn’t fully understand what the diagnosis meant for Emmy and for our family.

My experience has been that I can read all I want but, until I’ve lived it, I don’t truly comprehend it.

This year, Emmy wasn’t snoozing. She was dancing and laughing and eating burgers and tackling her sister and giving hugs and trying to make friends. She’s just so much fun to be around.

By all accounts, Williams syndrome is a completely random genetic occurrence. It could happen to anyone. I think the word “genetic” can be misleading because it sounds like we had Williams syndrome in the family prior to having Emmy. On the contrary, I’d never even heard of Williams syndrome! It was a total shock to everyone.

But spending time with Emmy over the past 1.5 years has made me wonder…

Was this really random?

I can’t help but think that this was meant to be…

She has taught me so much about myself and others. I’ve learned that I’m much stronger and more capable than I ever thought. I’ve learned that other people, whose brains are wired differently than mine, see the world in a special way. And, best of all, I’ve learned much more about what these words mean: love, acceptance, and authenticity.

And one more thing…

Before Dan and I had kids, we talked about what we wanted for their future. Because we’ve both been painfully shy in the past and had to work hard to push through that, we had only 1 wish: That our kids would have social personalities.

When we found out that Emmy had Williams syndrome, we immediately looked it up online. And here’s what we saw:

People with Williams syndrome have “highly social personalities.”

Gives me chills every time I think about it.

Yes, it was meant to be.

We Have Each Other

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I’ve been at a loss for words this week. My friend has experienced a tragic loss that defies words and explanations.

There are many thoughts that have gone through my mind over the past few days. Why do bad things happen to good people? How can life be so fragile? Where are the miracles that I’ve dreamed about?

I’ve been thinking, thinking, thinking. And then something so strong came into my head, as if I didn’t even think it myself: “We have each other.”

Even if my questions do not have answers, we are standing strong together. Our hugs have been so tight. We’ve felt other people’s tears against our own cheeks. We’ve grasped hands and rubbed backs. We’ve leaned on one another.

We can’t predict the future, but there is comfort in knowing that we can rely on others to help us get through the tough times. These personal connections are essential.

This is what I know: It is my honor to support my friends. Yesterday, today, and tomorrow. We have each other.