Tests go well

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Veta went through the double doors of the Rascal Flatts Surgical Center around 10:30 this morning. She surprised us all by remaining more tranquil than many of her doctor visits. I’d like to think she knew that she was sparing us, hanging in there tough just to make this easier for us.

They gave her an oral sedative first to relax her, then a little more through a mask before any pokes. That makes the process easier on the patient and all loved ones.

Five hours later, we met with Dr. Jansen who had a smile on his face. All of the tests went smoothly and the results were good.

There was one surprise. One artery was discovered that was causing some of her blood to bypass her lungs. All along Veta’s blood saturation levels have been very good considering her unique anatomy. The doctors think this artery was tiny at the time of her last surgery and has grown since then.

They were able to close it off this afternoon. It would have been more challenging tomorrow due to some scar tissue in that area of her chest.

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Veta’s pumping chamber looks strong and her valves are not leaking. Everything they examined indicated that she is ready for surgery tomorrow.

So we can exhale for now as we wait to see her this evening. We won’t know when she is scheduled to have surgery until tonight.

Tomorrow will be a very long day for us all.

A fun day, now the process begins

Yesterday was Veta’s day.

We headed out a little ahead of Ben, Mysti and Charly and had time to wander around Target’s toy department before heading to the Nashville Zoo.

Fortunately we had great weather just before the storms blew in. Papa took a ton of pictures as Veta enjoyed giraffes, macaws, meerkats and some sleepy kangaroos.

Last night we had a party with lots of fun new toys, puzzles and activities. I’m not sure who was the most tired at the end of the day.

This morning began with a zillion bubbles and Veta stayed pretty calm in the waiting room. She is a real trooper, perhaps more so than her Papa.

Ben, Mysti and Veta went back at 10:36am. Mysti came out once to tell us the nurses gave Veta some markers and told her she could color all over the sheets. It’s the small things that make this a very special place.

Veta will have a sedated echocardiogram and heart catheter procedure this morning. Her surgery is tomorrow.

As Doc McStuffins plays on a TV above my head, I draw a tiny bit of comfort from the dialogue, “This is the only hospital that’s fit for a king.”  Vanderbilt is that and more. Still, I can’t wait until these two days are behind us and we can start making plans for our next zoo day.

 

A Sunday Science Lesson

It was a beautiful spring day today. Warm sunshine and a steady March breeze created the perfect kite flying conditions. As Veta’s blond hair waved in the breeze, she became fascinated with the sky. “Look at the clouds Papa.” “I see them. Do you know what kind of clouds they are? They’re cumulus clouds.” “Cumulus clouds,” she repeated with a smile.”

Sundays are our fun days and I try to sneak in some science whenever I can. Bird watching, wildflowers, kites and clouds were today’s topics. I wanted to tell her about barometric pressure and why the wind blows, but we’ll cover those meteorological tidbits on future adventures.

Our kite flying diversion was brought back to earth by another observation. “Look, a helicopter.” Sure enough, a LifeForce helicopter was heading west across the cloud-dotted sky.

Some 1,587 days ago, Veta’s journey began aboard LifeForce. Tomorrow we are heading back to Nashville.

Many people have asked about her next surgery, the third in a comprehensive arterial re-routing that will allow her unique heart to perform the best it can.

It’s a pressure problem on one level. A challenge to help her heart distribute blood and oxygen throughout her body by optimizing her arteries and blood pressure.

This graphic explains the three steps better than I can.  At face value it’s a complicated open-heart procedure. And, Veta’s heart is actually facing the “wrong” direction compared to you and I. So there’s another level of difficulty.

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We will spend tomorrow having fun at the Nashville Zoo, then Ben and Mysti plan to take Veta to the hospital just to look around. They feel like she’ll be more comfortable with the atmosphere when she goes in for her sedated echocardiogram and heart catheter procedures first thing Tuesday morning.

We’ll probably find out when she’s scheduled for surgery on Wednesday after her tests on Tuesday. If the literature I’ve read is correct, the surgery will take at least five hours.

I don’t think anyone will be surprised to hear that we’ve all been thinking about this, or more appropriately trying not to think about this, for a long time.

While it is a bridge we must cross, it isn’t easy for any of us. We all know that Veta is in the best hands possible. We know that she is amazingly strong and resilient. But sometimes you look in the mirror and have to admit there’s fear in the face looking back at you.

This time she’ll know what’s going on but won’t understand. That makes my chest ache in a way I’ve never experienced.

But the wind that tussled her hair and kept her kite aloft today also lifts my spirits.

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The wind also spreads a million wishes across the land after the spring sunshine encourages another crop of “wish flowers” to bloom.

I’m using all mine on Wednesday.

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“Two.” Happy Second Birthday Veta!

Happy Birthday Veta! You are officially entering your “terrific twos.” This has certainly been an incredible year – full of exploration, giggles, hugs and learning.

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Even though Sandie and I have tried to spend as much time as possible with Ben, Mysti and Veta, 2014 has blown right past us. Time really does fly when you’re having fun. So we cherish every moment, thankful for the way Veta’s face lights up each time we see her again and grateful for her progress.

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Veta is like a little sponge lately. She’s already counting to 20 and reciting her ABCs. (I think it’s because she has pretty amazing parents.) Sometimes she’ll just blurt out, “two,” which sometimes sounds like, “too-eww.” As if to remind us that she’s no longer a one-year-old. “Uh-oh” is another popular phrase that’s frequently a post-nap or early morning greeting. (We’re working on, “Good morning everyone!” Or at least Papasaurus is hoping Veta will pick up on Mr. Cod’s line from Bubble Guppies.)

While we keep fueling her desire to learn, I feel like we’re being taught something as well. Lately I have been thinking about the many wonderful lessons that are ahead for her, and us. I enjoy her toddler stage, but I’m anxious to discover what she thinking about. I believe there’s an insatiable curiosity within her, just like her mom. Mysti was always full of questions and I can’t wait to be quizzed by Veta in the same manner.

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Sandie has a list of things she’s learned from Veta. I’m reposting this now, hopeful that one day Veta will see this and appreciate the joy found in her grandma’s words.

Tomorrow Veta will be 2! Here are a few important lessons I have learned (or re- learned) over the last two years:

1. To be more compassionate. To realize that just by looking at someone, you cannot know what they are going through or have been through.
2. That you can dance even with no music.
3. That Papa’s lap is the best seat in the house. She comes from a long line of little girls who figured this out (me, her mom….)
4. That you CAN physically feel love in your heart. I knew this, but I think we take it for granted.
5. That 10 is followed by “ellellen” and V is followed by “uba-yoo” Oh, and twelve is (sometimes) a “secret” number and should be whispered. But not always.
6. That you can take the cardboard tubing off of hangers and use them to make music on a brass headboard, and it will bring you lots of joy.
7. That it takes 310 3″ balls to fill an inflatable ball pit that is about the size of an inflatable kiddie pool, but that it’s SO much fun!
8. That we should be more patient and kind to one another.
9. Almost anything can be made into a hat. One simply needs to place it on top of their head.
10. That peas, carrots and beans are better than any cupcake or cookie. I am still questioning that one!
11. That clapping and yelling “yay” is grossly underrated.
12. That muddle puddles, sticks, dirt and leaves provide hours of fun.
13. That girls don’t necessarily have to like only dolls and princesses and boys don’t have to like only trucks and race cars. That we should allow their own interests to develop and let them enjoy what makes them happy.
14. Little white socks from Walmart: 1.99, ruining them by splashing in mud: Priceless.
15. That little kids CAN be our heroes.
16. That you should always hug a heart baby’s parents.
17. That we should all try to find something to clap and yell “yay” about every day. Even if it’s just the fact that you can make music with cardboard tubing from hangers and a brass headboard!
Happy last day of being one, my love!

 

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Veta has been surprising us with the ease at which she takes her medications. And, her progress has been surprising her doctors. While she is a good patient at home, that’s not the case when she has to go into a hospital setting for a checkup. Although I haven’t witnessed it first-hand, Mysti says Veta’s volume definitely goes past 10. I think her protests are understandable given her experiences. I only wish there could be a way to explain to her how much we appreciate her doctors and surgeons and how much they want to make sure she continues to grow and progress. Her next cardiologist appointment will be in March. Hopefully she’ll come home with another great “report card.” But, we have been told that her next heart surgery will be sometime between ages two and three. Between now and then she’ll continue to grow bigger, stronger and smarter. She definitely keeps us moving as she stays constantly in motion.

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We would also like to express our gratitude to everyone who follows Veta’s progress and shares messages of support and cheer at her achievements. We always have much to celebrate during Thanksgiving because of you and an incredible team of medical professionals.

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Each time I see this smile, I think about how “this is gonna be the best day of my life.”

 

Happy Birthday Veta! – day 365 of life – November 20, 2013

A first birthday smile

I don’t recall how many times I’ve heard someone say, “Veta sure is a happy baby.” Every time I hear this it makes me smile. “Yes, she really is,” I tell everyone.

I’d like to think that Veta’s happiness, bubbling forth each time we’re with her, is her way of making up for some lost time. I also think her giggles and beaming face are reflections of being surrounded by love. Her loving parents are amazing. When the chips were down, they held each other up – and together – like nothing I’ve ever witnessed. (Next to Veta’s laughter, I love seeing the joy in Ben and Mysti’s faces whenever their precious little girl is being silly, curious or loving.) And, Veta has been blessed with so many extended family members and friends who said prayers, reached out to help and have always buoyed our spirits when we desperately needed a boost. We are forever grateful to all of you and I hope you’ll pause and smile today to celebrate Veta’s first birthday with us.

Without an amazing team of medical professionals, both here at Erlanger and at Vanderbilt, we would not be able to share in this very special day. I’ll never forget the look of concern on the nurse’s face in the nursery, the compassion shown by the LifeForce team members moments before flight, or the always calm, and always caring, actions of the doctors and nurses who cared for us while doing everything they could to save Veta’s life. It has been an incredible year. The elation outweighs the difficult times that are behind us. Veta still has challenges ahead, but she has proven her toughness and resilience. And that makes us all smile.

In the past 365 days there have been a lot of firsts. First flight, first surgery. A first day at home and a first day out in your stroller. Your first tooth. The first time you went to see the penguins. A splashy time while swimming for the first time. Your first pumpkin at Halloween. There are so many firsts ahead. First steps, first words…..and many, many happy achievements yet to come.

I’ve been thinking a lot about time recently. How come time seems to grind to a halt when you’re in a hospital waiting room, but it vanishes all too quickly whenever a little one is entertaining you with belly laughs?

Is it possible to learn how to expand the good times? If so, I’d like some tutoring.

So Veta, if we take a million pictures of you, or smother you with love, you’ll know that we’re simply trying to savor each moment with you. To slow the pace and create wonderful, lasting memories with you. Happy first birthday!

Watch Veta’s Happy First Birthday Video on Vimeo: http://vimeo.com/user22833717/vetasfirstbirthday

Happy first birthday Veta from Veta’s Grandpa on Vimeo.

Veta moves out of PCICU

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We continue to get good news from Nashville. Today Veta was moved out of PCICU and is now in a regular room at Vanderbilt Children’s Hospital. One of her chest tubes was removed, (leaving one more to go) and they removed an IV line and turned off the oxygen since her numbers look so good.

According to Mysti, Veta is also more alert and eating well. With fewer lines in, Ben and Mysti are now able to hold Veta again which I’m sure is comforting to all three of them. Veta also seems more content overall than the past few days.

The hospital has had a sleep room available for Ben and Mysti which allows them the opportunity to go back and forth from Veta’s room at any time throughout the night. Now that Veta has been moved upstairs, they will be able to stay in the room with her.

We don’t know how much longer Veta will have to remain in the hospital, but since everyone originally thought it could be two weeks or longer, it seems remarkable that she could be coming back home in just a few days. She continues to amaze all of us with her resilience.

Once again we are grateful for the outstanding care she has received so far and for the support we’ve received through thoughts and prayers.

Veta Continues to Improve – Friday, July 26th, 2013

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Veta got her breathing tube out yesterday (Thursday) which is usually not done until the third day after surgery. The medical staff has posted a chart of “goals” in her room. By the second day Veta had already met most of them and even exceeded a couple of others. Grandma says she is, “A feisty little stinker.” Late yesterday the team removed a tube in her neck. Veta is so amazing and through all of this we continue to be amazed at Ben and Mysti’s strength. They are such loving parents.

Veta is eating better today (Friday) and Mysti thinks that is helping her feel better. Her chest tubes are still in, but they are looking real good. Another line that is in her arm may be able to be removed later today. All of her numbers are good right now, Her blood pressure does go up when she is awake and grumpy, but Ben and Mysti are doing a great job keeping her as calm as possible. Several people have commented that they would be grumpy too if they had gone through everything Veta has been through the past few days.

We are going to spend a little time with Veta today and then head back home. Ben and Mysti will be spending all of their time at Veta’s bedside and resting when they can. We’ll certainly miss our chances to peek in on Veta, but we are so grateful that her recovery is going so smoothly. This hospital has such an amazing and caring staff.

Here are Mysti’s comments from today:

Veta is so much happier today. Yesterday if she started to wake up she was mad, thrashing around, and had to be sedated all day. Which is expected, but it’s still hard to see her like that. Now she has been allowed to eat, and this morning when we got to her room, she turned to look for me when she heard my voice.  Made my day. Also, her numbers are looking great, and she’s looking good physically. Thanks again, always, to all of you for the thoughts, prayers and love!

8:03 PM – Relief!

The surgeon had a smile on his face when he came out to tell us that Veta did great. The procedure went smoothly and everything looks good with no bleeding. He also said bloodflow to the lungs looks fine. We should get to see her in less than one hour. They plan to leave a breathing tube in for the night, but hope to remove that in the morning. 

I think the surgeon, who also performed Veta’s first surgery, is almost as excited about her current condition as we are. “We’re going to get her home a lot quicker this time,” he said smiling. “How about that?”  He has no idea how good that sounds to all of us. 

Update 4:05 pm

Ben and Misty came back to the waiting room and told us everything is moving along fine. It will take about an hour to get Veta back to surgery. Then it will probably take until 10pm tonight to complete the procedure.