Category Archives: Children

Teresa B

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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

Being Present During The Bedtime Routine

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Beingpresent

Things with Emmy have calmed down a bit. She’s feeling much better, though she can turn SUPER cranky on a dime. I’m a worrier by nature, so I’m constantly checking her incision (It’s quite a sight. Eek!) and watching her closely on the monitor during naptime. Because she’s doing so well and is generally happy, it feels as if the past month were a dream.

I can’t believe that happened… Did I watch a movie, or was it real? I’ll think about snippets of scenes from Emmy’s time in the hospital and it’s as if I’m struggling to remember something that happened 10 years ago. I think my lack of memory is my body’s way of protecting myself from going back there. At some point, I want to write it all down. I just can’t do it yet.

One ongoing lesson that really hit home during that insane experience is that I need to be present with my kids. I’ve known this for a while now, but it’s difficult for me to put into practice. I’m a multi-tasker. I want to do, do, do. It’s hard for me to sit and just be.

But time with my kids is so precious. Sometimes I have to just be and not think about my never-ending to-do list.

I read a quote recently that stuck with me. I wish I could remember the author because I want to give him/her credit. But my brain is fried…

Here’s my paraphrase of that lovely quote: When you’re spending time with your kids, don’t rush through it to get to the thing you have to do. Your kids are the thing.

That quote speaks to me at bedtime. We have a routine, and the routine has gotten very long and multi-layered. Emmy is easy to put to bed. She drinks her milk, says “night night,” gets 2 books and a song, and falls right to sleep. Charlotte, on the other hand, likes to stretch out the bedtime routine. It has gotten longer and longer and longer…

First it was a bath, book, and bed.

Then it was a bath, 2 books, and bed.

Then it was a bath, 2 books, think-about-a-story-in-your-head, song, water, two clips in hair, and bed.

Now it is a bath, 2 books, think-about-a-story-in-your-head, song, water, two clips in hair, hug from me to you, turn off and on the light to test darkness levels, turn off and on the colors of the ladybug night light to find the perfect color, and bed.

Once we manage to say “Night night” and close the door, Charlotte still cries 3-4 times for us. We have to go back in there and often replay parts of the routine (maybe an extra hairclip or a different color on the ladybug).

The problem is that, during all of this, I am thinking of the things I have to do! And there are many of them! After we put the kids to bed, Dan and I spend at least 2 hours getting chores done and cleaning up.

So, while I would like Charlotte to be the thing that I am focused on, while I would like to just be and enjoy this time together, I can get increasingly frustrated at the long list of add-ons to the routine.

I know she does it on purpose. Of course she doesn’t want to go to bed! I’m a night owl myself, so I can’t blame her. But it’s hard for me to cut the routine short because I am so very conscious of the fact that, when she’s a teenager, she’ll probably be stomping around the house in all black and ignoring us.

I know I will eventually long for this endless nighttime routine. I just know it!

I’ll catch a glimpse of my future self asking, “Hey, honey, would you like me to think of a story in my head?”

And I’ll see teenage Charlotte roll her eyes and say, “Get a life, mom. No one has time for that.”

It’s true. One day, she won’t have time for me. So I’m conscious of the fact that I have to treasure this time with her instead of getting to that next thing. (Though I maintain the the bedtime routine has gotten a little out there. She’s a smart girl, and I’m a sucker for “Just one more hug from me to you!”)

She’s Home!

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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!

In Love

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Love

I learned something really incredible over the past three weeks. I am so in love with this kid.

I used to think it was weird when people said they were in love with their kids. It seemed like a strange turn of phrase. I used to think that we are in love with our spouses or partners — but we love our kids.

I found out what it meant to be in love with my oldest child when Charlotte turned 1 year old. That’s when I felt it for the first time. She turned from a little baby into my little buddy. She was fun to interact with, and I saw her personality start to emerge. I remember taking pictures of her eating blueberries outside on the grass. She put a play phone up to her ear — upside down. And, as I snapped away, I thought, “Wow, this is it. I am in love.” I finally understood what that phrase meant.

With Emmy, the road has been different. I was overwhelmed with a lot of information early on that scared me. She was only 5 weeks old when I found out that she has Williams syndrome, and I was really intimidated by what that meant for her future and ours. And then there was a lot of work to do. We had to arrange doctors and call physical therapists and organize medical bills. There was a lot of stuff getting in the way of my connection with my daughter.

These past three weeks have changed everything. When her heart stopped beating and the doctors were trying to save her, all of the other stuff disappeared. I was so purely connected to my daughter, and I wasn’t even in the same room as her. I couldn’t even see her. The doctors and nurses were inside her room, trying to save her life. And I was in the hallway, kneeling on the floor and sobbing.

But the other thing I was doing was talking to her. I named all of her favorite toys and activities. I named family members. I named friends. I begged, “Come back. Come back to me.” There must’ve been twenty people between us and around us, but I felt as though it were only the two of us. That connection, that bond, was so strong and so pure.

As special needs parents, and parents in general, we have many hurdles to overcome and struggles to deal with. Over the past two years, I felt that stuff getting in the way of a pure connection to my child. It felt like baggage, and it was heavy.

Being in this position with Emmy made me realize that I need to focus on keeping a pure connection to her. Yes, she has special needs. And it is important for me to help nurture those needs. I actually love that she has Williams syndrome. The diagnosis has brought many, many wonderful qualities with it. And I love so many of the people I’ve met that Emmy has brought into my life — caring doctors, incredible nurses, excellent therapists, sweet teachers; supportive friends. I would never have met them otherwise.

But, at the end of the day, when I tuck her in at night, the only thing that matters is that Emmy is my daughter and I’m her mom. And that connection is so very strong and pure.

I am absolutely, head-over-heels in love with her.

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

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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…