Just One More

Swiftie Sisters, the Swindler, and a Bedroom Fit for a Teen

2024-03-18T18:35:00.000-07:00

Happy World Down Syndrome Day!

March 21, 2024

Unlike becoming a parent of neurotypical children, parents of children with Down syndrome must consider the future in sometimes helpful and unnecessary ways. And that starts at birth. The fact remains that we must work a little harder to secure a place in this world for our children who will grow into adults. We search out meaningful ways for them to engage in their communities, keep them eligible for essential supportive and life-sustaining benefits, and prepare them to eventually live someplace without us. I’ve used this blog to document certain important milestones, and lessons learned over the years. We’ve enjoyed a relatively uneventful and typical number of years going to school, getting to activities, and playing with friends. Hence, blogging just slipped by the wayside. Honestly, it’s been lovely having the quiet and fun years (dare I say that) of four kids in their teenage years just enjoying life.

Although Mrazian by superfan standards, I certainly make room for other artists and it was about the time of Bernie’s final and triumphant discharge of her first year in September of 2008 that Taylor Swift released “Love Story.” I think I listened to that song every single day driving Izzy to kindergarten. It was my only break in the day to be alone and on the ride back home with no one else around, singing out those lyrics made me feel on top of the world. Just as Taylor flipped the script on the tale of Romeo and Juliet, Bernie's story flipped into an unlikely tale of survival and connection. Parenting dished out one heck of a year and finally getting home after 220 days in the hospital was an incredibly overwhelming feeling of love and connection after so much uncertainty and extreme stress. After posting about Congenital Heart Defect Awareness week around Valentine's Day, people would comment that “Bernie’s love story is one of my favorite love stories.” Mine too. If you are new to Bernie’s story, you can find that chapter here. And if you want the Friday the 13th Prequel to our story, check that out here.

While I flooded the house with the music of Jason Mraz, my children wanted to listen to Taylor Swift. Her career has spanned the entirety of their childhood. The “Big Three” were growing up finding and making their own music. Check out the episode below I call “Busking with Beezer” where Izzy was apparently raising money for Down syndrome with her fake guitar at the end of the driveway. Izzy is our family's original Swiftie.

Here we are in the next transition into adulthood. The sisters are finding their way to and through college. (Sidebar announcement: Sadie was recently admitted to the University of Michigan and will attend the Stamp’s School of Art and Design, and eventually transfer into the School of Architecture-Go Blue!). The older sisters are living on their own, forging new relationships, and deciding on career paths. At 16 years old, we’ve reached an important point in time where we are asked by everyone involved in Bernie’s educational experience and medical care to consider how we will choose to engage in a totally adult world with Bernie. And so much of that depends on who Bernie is, what she wants in life, and what gives her satisfaction and joy. The answers unfortunately are not easy or clear at this point in time. Career paths and options for group and/or independent living for people with Down Syndrome are limited.

In short, a few words we’ve learned over the last few months that resonate with her are Culver’s and Taylor Swift. Not necessarily the endgame or final thoughts on the matter, but certainly it’s becoming a process to tap this information from a sweet and sometimes grumpy young lady (total teenager through and through), who chooses her words very carefully and would rather sit quietly in her bedroom and listen to music. She knows most every pop artist, the titles of the songs, and most every lyric. If you can catch her singing in an animated way, consider it a treat!

Bedrooms are tentative spaces. Soon after our return home in September of 2008, Bernie was able to move into the bedroom we could truly call hers. Trust me I thought about what would become of this room if we weren’t able to bring her home that year. Surely it was quite likely that over 20 episodes of cardiac arrest made that a realistic possibility in that first year. We could now fill her room with all the things that defined her and give her a space to rest, explore, feel love, and become a little girl.

Now at sixteen, that little girl bedroom is something Bernie has outgrown. She’s always loved the color pink and making that the color of her walls has been the plan for as long as I can remember.

So a couple of other things that are important to the story happened last fall. First of all, I enrolled Bernie in Open Spot Theater, are unique opportunity for people with different abilities to have a positive experience on the stage both individually and with the larger group. Getting up in front of people has always been a challenge for Bernie. If you really need the backstory on this, you can watch her first time on stage here. Signing her up for this class was something of a risky move. The last session was all about each student getting on stage to perform something that meant something to them. It would take a combination of very special forces to get Bernie up there.

Not long after that first class, some of the other parents and I decided to take our daughters to the Taylor Swift movie when it opened. My daughter Sadie spent her last day of high school traveling to New Jersey to see one of the Eras Tour shows and we knew this was fascinating to Bernie. Attending the film of the concert was a game changer. Bernie was laser focused for three hours and absorbed every second of the performance.

As we drove home, Bernie requested to hear "Willow." It was right about that time she made the decision about what she would perform for her talent show for Open Spot Theater. After some weeks of work, the purchase of a remote control light up beach ball, and lots of direct encouragement, you can see for yourself how seeing this movie and having this music motivated Bernie (the first 20 seconds are really all you need-for real).

And it didn't stop there! Taylor Swift's music not only inspired the above performance, and it also became a tool to get her moving. With her phone also came an old Fitbit with her new step goal to complete 7,000 steps in a day. The movie inspired Bernie to try some of her own new, rad dance moves in a space of her choosing around the house to get some exercise. No small task for someone built for comfort like the Bern!

It was about that time that a friend of mine posted on Facebook that she had four tickets to a Taylor Swift concert in Indianapolis November 2 this fall. That would be right after Bernie's birthday in October! After scheming and thinking and dreaming a little, my sister said she would meet us there and buy two of the tickets to make this idea of taking Bernie to a real Taylor Swift concert a reality. We were getting fired up! I told her I would take them. She didn't get back to me right away so after a few days I decided to text her. I was ready to make this plan happen!

Her quick text reply made my heart sink. She said that wasn't her and her Facebook account was hacked and under NO circumstance should I send money to her through Facebook. Bernie never found out about the birthday plan, but in this few months since the film, I've proclaimed my own Swiftie status and was quite enamored with the idea of going to the show. And that likelihood just went down the toilet. Thank goodness I never sent the money. It made me realize we needed a new way to engage with Taylor Swift.

A leaking shower above Bernie's room forced a premature dive into renovating Bernie's room in January. Drywall and pink paint hit the wall and the talk of doing a Taylor Swift inspired bedroom became the idea we wanted to pursue. After all, the colors in the movie poster certainly aligned with Bernie's request for pink walls. A trip to Ikea for some new accessories, a silver "Taylor's Heart" hand heart statue, and some sparkle curtains were instant hits.

But what to do for the wall art? Our family has never been hip to pedestrian wall hangings for our own home. The items we hang have very personal significance and are most often prints from places we've traveled, photos and art of/by people we love, or creations we've put time and thought into making ourselves. Maybe we would paint something in the color palate of the movie poster? Maybe it was paper cutting or some artistic rendition of the original covers?

This is the first year that we are unable to take a trip all together for spring break. A few reasons. A major furnace repair, three kids in college, ridiculous airfare prices, and the tiresome drive to Florida to name a few. Yet college kids come home sooner. My next idea was taking shape: What if our family's original Swiftie (who happens to physically resemble her to boot) would pose with her sister for some new "interactions with Taylor Swift" and we could remake Taylor's album covers with our own twist? When presented with the idea, Izzy was all in!

And so it goes. It's just what we had to do. It was a lot of fun. We found our own way to engage with Taylor Swift and it just so happens to be two of my four great loves doing the smiling and interacting-the greatest gift for a parent who loves photos. And in true Taylor Swift style, there are some advocacy "Easter eggs" hidden in each one with some nods to other favorite memories and people that you can catch at the bottom of this blog entry.

If you “are what you listen to“ I’d love to take this opportunity to say thank you to Taylor Swift for a few things. Thank you for the gift of song that gets our kids moving and feeling, trying new things, taking reasonable risks, and having fun. Thank you for giving girls permission to love their mothers especially in those awkward years when parents can be perceived as less than cool. Bernie sat in the car the other day and showed me "Taylor's Heart" as she held her hands up for the first time against her chest to show me this signature move. It was awesome. And that's something for which I am truly grateful. Taylor's heart is truly present in everything she does and she is an amazing person who has inspired a generation of strong women and people thoughtful of being on the right side of history. And she is an incredible songwriter! And a thank you to Taylor's parents, Andrea and Scott. As March is also Parenting Awareness Month, it's only appropriate to honor their work as well in all of this. So happy to have Taylor's likeness and energy alive in my kids. Can't wait to see where it takes us next.

Thanks for following along and reimagining the possibilities, relationships, and interactions for people with Down syndrome in this world!

Long live the walls we crashed through

I had the time of my life with you

Long, long live the walls we crashed through

How the kingdom lights shined just for me and you

And I was screaming, "Long live all the magic we made"

And bring on all the pretenders, I'm not afraid

Singing long live all the mountains we moved

I had the time of my life fighting dragons with you

And long, long live the look on your face

And bring on all the pretenders

One day, we will be remembered

-an excerpt from "Long Live", Taylor Swift

Keep scrolling for the Easter eggs/ advocacy messages explained!

Here's the new Taylor Swift Inspired bedroom!

Return to Paradise!

2017-02-06T10:51:00.001-08:00

It's good to be home! We made it back last night, but before we left Mott, we had to take care of a few things.

We delivered some goodies to our heart buddy Bowen who in turn played a song for us on his "Spamjo". Completely awesome!

We had to go play on the playground on the 8th floor since Bernie could not participate the way she wanted to the day before.

And we got to say goodbye for now...

Arriving home, we were greeted by this awesome sign in the dining room signed by all of the kids at Woodland. It's lovely!

Bernie was so happy to be able to "cuggle" with her sisters and see Fergus, aka Goodboy.

And of course, Bernie wants to sit and page through books of all kinds, but I wasn't expecting this to be what she wanted to look at now that she's home!

Ah, it's wonderful to be back to the land of full-size bath towels, beeping from household appliances only, and usually uninterrupted sleep.

We can't thank you enough for your verbal encouragement, culinary support, financial contributions, and loving care. However it worked for you to show your support, we are grateful. We know it's different for everyone and that's what makes it so great.

For those of you who offered up financial contributions, we are ecstatic to let you know that this money is enabling us to purchase a home testing machine for Bernie to check her INR as needed without having to go to the clinic. When Bernie was a baby, these machines cost between $3000 and $5000, money we weren't willing to shell out just for convenience when the clinic is right across the street from our house. We are now able to get the machine, test strips and lancets for just under $1000. Our local clinic hours have also changed in the last year and is not open when Bernie is out of school for the day. Insurance does not cover this type of purchase. We will now have our own machine and this is going to help A LOT! Thank you!

Thank you for everything and we are hoping to be nice and boring for the remainder of 2017. We couldn't have gotten through all of this without you!

❤❤❤❤❤❤❤❤❤❤❤❤❤

SuperBern Sunday

2017-02-05T07:57:00.001-08:00

INR at 2.7 and nosebleeds or not, we will be discharged as soon as possible which hopefully means we can be home by dinner time!! Yippee!

Yesterday we spent time touring the hospital and I ate with the girls in the cafeteria. In riding around, Bernie loved it when the girls would run ahead of the wheel chair and hide behind corners in the halls. Bernie also spent a considerable amount of time browsing the gift shop.

Once again, our heart family here at Mott continues to amaze us with their skills, patience, and dedication to providing the highest quality specialized pediatric cardiac care. Bern really is something of an anomaly and there is no other place in our state or even in the Midwest to which I would trust caring for her cardiac needs. FYI, Mott is currently ranked #7 in the nation for pediatric cardiac surgery and care by USNews and World Report. Detroit Children's Hospital is approximately #47. DeVos is not even ranked. Please know this information even if you don't think you need it, especially if you live in Traverse City/Northern Michigan. If you or a small loved one ends up in trouble from a heart standpoint, you can get here from Northern Michigan usually by request only. If there's one lesson I have learned through all of Bernie's affairs, it's that you have to be your own and your children's own best advocate. You shouldn't have to fight or request to get the best care, but you do. And you don't have to be born with a heart defect to need this type of care either. Just take that tidbit of knowledge and tuck it away where you can find it later if you need it.

So the last IV just came out and here's the fist bump to prove it. Now time to shower and get out of here. See you in the north!

Saturday Roses and Thorns

2017-02-03T18:18:00.001-08:00

Rose:

Cuggles with Lucy

Thorn: 5 bloody noses using countless gauze pads and washcloths

Rose: Afrin to help stop bloody nose

Thorn: 2 attempts on 1st blood draw

Rose: Cool infrared handheld device to detect blood vessels

Thorn: Have to poke again before 7 AM

Rose:

Sisters crafting together

Eating dinner for the first time in a week with my sweet Izzy, Lu, and Sadie😍

Very big rose:

Thorn: I realize that in titling this post that all of this really happened on Friday. Hospital time can warp a brain slightly!

Discharge Delayed

2017-02-03T09:14:00.001-08:00

Wouldn't you know I was checking out of Ronald McDonald House just as Bernie was getting her INR checked and her numbers are not worthy of discharge today. Her INR is only at 1.7 and it needs to be between 2.5 and 3.5. 😔

Needless to say I got immediately back on the phone with RMH and got our room back.

Here's what this means for Bern:

1. We start Heparin again. She has that new IV from yesterday.

2. She gets labs drawn tonight at 7 and again at 6am tomorrow. More pokes.

3. She is in the hospital for at least the weekend. Best case scenario for discharge is Sunday.

Bernie enjoyed seeing the sisters. We had presents in the playroom and we even caught Bernie trying to RUN to the lights in the corner of the general care floor.

The girls sort of remember the Ronald McDonald House from when the were small. The most distinct memory was that of the fresh smell of the laundry room/rec level. The renovations are terrific!

Bernie knows how to make her rounds in this hospital, that's for sure. I can't imagine how many patients have spent multiple hours in the same day on the general care floor, the PCTU, the cath lab, and the play room. She just continues to let us know that everyone in every department of this Congenital Heart Center is needed and valued.

Nurses Rebekah and Sandy help remove Bernie's IJ after her trip to the cath lab for her ECHO yesterday. Even though anesthesia wouldn't remove the line yesterday saying, "It's a hematoma waiting to happen," we did it and it went very smoothly!

Visitors welcome. Just trying to make this as fun of a weekend for Bernie and the girls.

We will hope to see Traverse City by the end of the weekend or the first part of next week.

Bernie actually enjoyed music therapy this morning.

Thanks for continued prayers that Bernie can get through these daily blood draws without too much trauma. They are super hard for her.

Love to all.

In the Cath Lab for another echo

2017-02-02T13:20:00.001-08:00

Bernie had some apple juice when she came out of her first round of sedation today. That pushed us to needing to move again at 3 o'clock for another echo in the Cath Lab under a greater degree of sedation.

We spent an additional two hours in the PCTU waiting for the next procedure. Fortunately, one of the therapy dogs was available to entertain Bernie for a while. Lola climbed right in bed with Bernie and they hung out for a good 20-30 minutes. A perfect diversion.

They're going to brush her hair and give her a bath while she is sedated as well. Hopefully the hair brushing will not push her over the edge into an agitated state. They may or may not do a transesophageal echo well they are back there.

In the meantime, I went to the bathroom and brushed my teeth for the first time today at 3:00 and I am eating this full order of Count Twists.

I just got word from our nurse practitioner today that everything from this more heavily sedated echo looks good. The gradient across the valve after further, more advanced exploration is somewhere in the 5 to 8 range.

Her IJ in her neck has been pulled and she has a new peripheral IV in although it really won't be needed. We are bumping up her Coumadin, getting one last finger poke INR check in the morning, and will be discharged!

Can I get an A-MEN!!!!!!!!! Thank you, God! Thank you, Love and Prayer Warriors! Jeff and the girls will be down in a few hours. we have a room at the Ronald McDonald house tonight and will be on the road to Traverse City tomorrow.

Now it really should feel good to see this movie of Bernie laughing with the therapy dog, Lola, before this last big procedure.

Not Coming Home

2017-02-02T09:48:00.001-08:00

Not a lot to say right now. Pressures across the mitral valve are not what we want them to be. Lots of people involved and moving parts right now so we don't have a plan just yet. We are just going to be here. Very disappointed.

Hopefully Over the Humpday

2017-02-01T20:12:00.000-08:00

Bern spent the day chilling in her room, walking the halls, visiting with friends, and playing with her cousin, Patrick.

She's wrapping up using her oxygen, wanting to get up, and moving more. She ate 3 great meals and as you can see from our photo report of the day, we had a pretty good day.

Ironically, we are on the brink of kicking off Congenital Heart Defect Awareness Week (February 5-12). So many of you ask what our family needs during challenging times like this. We need your connection. We need your prayers. We need the amazing science and the advancement of research relating to treating congenital heart disease. Sure, Bernie loves the presents that she gets and we certainly have enough to keep us busy here in this hospital room for quite some time, but most significantly, we need to be assured that her condition can be successfully treated over a lifetime. Today the hospital launched a new challenge for heart week to raise funds to make that promise to Bernie and kids like her. Donations will be matched by The Charpie Family Foundation up to $30,000. If you are interested in this opportunity, please click here.

The CHC Patient and Family Centered Care 3 Momskateers.

I hope Bernie likes Patrick's hair. It may come out looking just like his by the time we can shower and untangle it!

Tia on rice table overload.

Thanks again for following along. Tomorrow is a big day. Hopefully all of the numbers will be on our side. An update will be posted in the afternoon.

Brighter Day

2017-01-31T20:26:00.001-08:00

Whew. Glad today was better. Thank you for lifting me up after the downer day yesterday. Not the worst day I have had in this arena for sure, but it's never easy receiving news that's less than what you want to hear, especially when the stakes are so high. I managed to sleep from about 2am-6am and for some odd reason felt like pressing forward with a little room organization even before my coffee retrieval mission this morning.

We had a calm and easy day with no vomiting, nosebleeds, or extreme bouts of being upset.

Bernie ate a full breakfast, lunch, and partial dinner. She received 3 pints of blood since last night and is looking and feeling more like herself. Fingers crossed for a great repeat discharge ECHO on Thursday!

Just to remind you what is at stake based on Thursday's ECHO: If the gradient across that mitral valve is 10-12 or less, we can be sprung for home if her INR is therapeutic(2.5-3.5). We would come back in a few months for another ECHO. If pressures are still at 15 or higher across that mitral valve, Bernie will go for another heart catheterization on Friday. If pressures are confirmed to be this high in the heart catheterization, we will schedule another surgery for a larger valve as soon as next Monday.

At a minimum, Bernie has 2 more sedated procedures: the ECHO and removal of the IJ line in her neck where we access for blood draws, transfusions, and IV meds.

Her heartrate is still trending on the higher side, as high as the 110s at rest last night. She's usually a 60-70s kind of girl.

Destiny the whale shark does a great job keeping Bernie oxygenated with her "blow-by hole".

Thank you to those of you who can donate blood and do!! It's so important and appreciated. Bern is feeling so much better with her new blood, we walked to the lights at the end of our hall, played cars, and had spa night in the room. This is primarily when Bernie brushes my hair, we play soft music, light candles, and she practices putting ponytails in and taking them out of my hair. She seemed to even crack some smiles today.

Some other fun things we were able to do today included crafting in our room, standing at the sink to brush our teeth and wash hands, and play some games. She continued to drop just about anything with the possibility of a present so thank you to those of you who have sent some goodies along.

We may even consider cracking in to that squirrel's nest in her hair tomorrow. It could take time, if not a scissors. If Bern has a new do when you see her it's because our detangling efforts were simply not successful.

Onward to Thursday. Thanks again for the many loving and affirming words. We will heal the Bern! Let's just hope it gets to be the easy way and we can go home Thursday.

Monday, Bloody Monday

2017-01-30T17:49:00.001-08:00

Today is all about the blood and flowing of fluids. Not such a great day to be totally honest, but if you have been riding the Bernie Train long enough, you know it comes with a lot of twists and turns. And you get both. Sometimes lots of them.

Bernie still requires oxygen and apparently it's really drying out her nasal passages. Hence the dreaded nosebleeds. She's had about 4-5 of them so far today and as an anticoagulated young lady, that means they can last much longer and be more intense. Difficult when you couple that with pain management, basic recovery, and the fact that you are also unable to eat since you're throwing up with a sternotomy and chest tube wound. We've got more of a humidifier element added to the blow by tube so that should help a bit.

Her procedures did not start until almost two hours later than expected. That's a long time for a kid who wants to eat, but we finally made it.

She's peed, pooped(yay!), vomited a few more times, got her chest tube out (yay!), and had her discharge ECHO. The discharge ECHO shows that the pressure across her mitral valve is drastically higher than her post-op ECHO (went from 2 to 15) and is about what it was before surgery. This was disappointing. We had to then quickly go to the Cath lab for a type of x-ray of the beating heart to show that the valve was not the issue. It's not. It's working great. But, yes, pretty scary for about 30-45 minutes until the valve leaflet function could be ruled out.

Another suspicion for this higher gradient is that she is anemic which can falsely elevate said pressure gradient. Her type and screen indicates this is an issue. She's getting a blood transfusion right now to offset this. We are going to give it another couple of days and let her chill and recover, get moving a little more easily and we're hoping in another couple of days the ECHO will show some different numbers. We know Bern takes time so we need to give it to her.

Now if it takes more than time, a more back of the brain idea is that this size valve really need to be bigger than it is (despite being the best and most reasonable size and fitting well) and shoehorned in along with likely a pacemaker. Yes, this may mean another operation. Don't know when. That will depend on her.

Her heart rate right now is higher than her baseline and we are hoping it slows down a bit more to ease up those pressures. We are really hoping this changes.

Bernie herself has had a terrible day not knowing any of this technical stuff by name. She obviously feels terrible and even presents didn't get very far today, even if they did help slightly. She hasn't eaten in 2 days and has no interest in food. 😞

So how am I doing? Honestly today sucked. All of those feelings of needing to rush back into surgery couldn't help but move to the front of my brain. And, no, there's nothing anyone can readily do for me. My clothes are spattered with blood, vomit, and oxycodone. I taste salty, bloody secretions on my own skin from kissing Bern and holding her close during the day's seemingly endless procedures. And I will do it all over again tomorrow for her if I have to because that's what you do as a parent whose child is in need. Anything it takes. Because she is who she is and so very worth it.

So turn it back on, Warriors. You're in it. We will be here for a bit more and can't quite fully celebrate yet. But someday we will.

Thanks for being there.

A Good Day for a Bad Hair Day

2017-01-29T17:27:00.001-08:00

I'm happy say that we are worrying about lesser things today! Bernie is keeping food down better, successfully used the bathroom, her chest tube output is decreasing, and she is sitting up in bed on her own without assistance (if presents are present). Most importantly, we have seen brief smiles, even if she still hurts quite a bit.

We hit the floor and the sisters arrived within the same 20 minutes. Getting up and out of bed to walk to the rice table was an instant priority. It was a great distraction and motivation to finally get moving and have interactions with the girls.

The big sisters did some extreme crafting with the child life team. I am pretty sure they cranked out more crafts in an hour than the staff had seen in there all week. Bernie said she wanted to do some crafting, but her tummy said otherwise. She went back to the room and threw up instead. Red Monkey helped her sleep it off.

I had a "Saline Reprieve" at my cousins' house to stock up on sleep. Jeff stayed on at the hospital while the big girls and I ducked out. Staying in this hospital environment certainly makes me want to put plush carpeting and soft surfaces throughout my house. Every little exchange in a comfy home is really such a luxury.

Today we had a pretty social day and visited with the cousins, family, and friends.

Bernie certainly enjoyed a few more presents as well as cards and pictures of everyone in her class. She had to sleep off the excitement once again, but all of these pictures are taped to the wall for her to see. Such fun cards! Don't worry, 2-3 kids, Bernie is again eating cheeseburgers and will be back to school within a couple of weeks!😍🍔🍔🍔❤

Tomorrow is an big day as the dressing on her sternum will come off, the chest tube will come out (very unpleasant from my perspective, but she will feel so much better), we will get more aggressive in increasing her INR, and maybe, just maybe we can think about addressing this...extreme bed head!

It will be a good day when this is our biggest issue. It is the densest, most matted bird's nest of a head of hair I think I've ever seen.

Your prayers and positive energy to get through the procedures tomorrow would be appreciated. If you could also include Uncle Alex (Jeff's brother) who will be starting round 3 of 4 of his chemotherapy, that would also be appreciated. Our Grandy is working on clearing her lungs so she can continue to battle stage 4 GIST like a boss, but she's also needing some prayers right now. It's a tough time to be a Smith, but Bernie prayer warriors have tremendous healing power and we can share the love I'm certain. Thank you!!

Happy Sunday, Everyone!

Movin on Up Today

2017-01-28T09:41:00.001-08:00

Bernie did pretty well yesterday. She ate a couple small meals, drank a bunch of apple juice, and tried to go potty. She also got to start her warfarin back up last night. 😊

On the flip side, she also threw up a couple of times and had to have a catheter put in early this morning around 4 or 5 to help relieve some of the pressure in her bladder. If you've ever had a foley in you know it can be tricky trying to urinate afterward. Let's hope this resolves today.

We will be headed to general care up on the 11th floor. It's a little more difficult to update as my patient needs tending. I'm sure you understand.

Our big goals for today are to try and use the potty, walk around a bit, see the big sisters, and settle in upstairs in general care. Her chest tube continues to drain and we will work toward getting that out in the next few days. She is still sounds pretty junky and even though her chest x-ray has improved from yesterday, we have some more coughing and clearing to do today.

Thanks for following along and another update will likely come tomorrow. We have about 24 hours of whole family time together until next weekend. Big hugs from us all!❤

We appreciate all of your ❤, 💪🏻, and 🙏🏼!

A Good Night and Out of Bed

2017-01-27T10:36:00.001-08:00

Bernie kept things quiet last night wanting only a few things: Good boy (our dog Fergus), Mama, "Cuggle Bay Bay" (cuddle snuggle with Dad), and apple juice.

We stopped one of her drips, discontinued the lasix, and started her on some oral meds for pain control.

Resting with "Good Boy" and Red Monkey

"Cuggling with Bay Bay"

She has her arterial line and foley out, had a few bites of eggs, yogurt, and sausage, and is currently sitting in a chair. She has been drinking a lot and even tried to use the potty chair.

Bernie is pretty cranky and it is very hard for her to move around, but we are working hard to minimize her pain.

Our plan for today is to stay in the ICU, start her back up on her Coumadin tonight, and get her breathing deeply as her lungs are a bit junky from everything.

A big part of our team today, Nurse Kathy and her other half attending cardiologist Dr. John Charpie (or as Bernie calls them "The Sharkies"🦈) are overseeing most of today's affairs in the PCTU. So glad to have such wonderful care from everyone working to heal the Bern.

And if you ever need anything done, you just look at all the names of people commenting, liking, loving, and praying for the Bern! These forces are STRONG! We thank everyone for signing up to bring meals, donating to Bernie's medical expense fund, and powering positive energy in our direction. This love army is amazing! Thank you!!

Like "Moana", one of Bernie's new favorite movies, we have succeeded our mission to "restore the heart" so that once again the people can be at peace and prosper. We are hoping to be up on the general care floor tomorrow to fully complete this mission over the course of the next week.

Post-Op Bern

2017-01-26T19:40:00.001-08:00

We came to the room to see Bern after surgery and witnessed her extubation. She started to wake up a little bit and did not like that tube in her mouth. She's a little puffy, but that is to be expected. This first picture was before she was extubated with the breathing tube in her mouth.

Bernie is just going to rest tonight. We will leave the central and arterial lines in until tomorrow at the earliest. Her blood gases have looked good post-extubation.

Nurse Sue is healing the Bern tonight and she was there July 26, 2008, the night the crap really hit the fan. It was the worst night we ever had and came so close to losing her. Sue indicated that Bernie's story still comes up when training new nurses relating to extreme cases of pulmonary hypertension and how kids can surprisingly rebound. I still keep and wear the PJ pants I wore running to the unit that night as a reminder of what a bad night really is. It's my "Pajama Perspective Theory" that every night after that one really is managable. I've mended them 3 times and they are paper thin, but I refuse to get rid of them.

We may be opening a tab in the gift shop. Bernie will be scouting for presents when she wakes up tomorrow. We assured her when she wakes up there will be presents and she must have reminded us 3 or 4 times in the pre-op area.

The good news for Jeff and I is that we scored a room at the Mott House which is the Ronald McDonald House here inside the hospital. It's so wonderful because we have our own personal sleep deprivation tank with the comfort of a nice mattress, private bathroom, and comfortable community living space.

The "Michigan From the Heart" group of athletes stopped by again this week. Bern didn't really know they were there, but Jeff and I had the chance to talk with them and reminisced about life as college students who met here at U of M on the last day of the last term of drop/add that we were both here. They were excited to know there was "still hope" as some of them were upperclassmen. Oh, and Izzy, rowing scholarships for girls are real! Two of these ladies are on the UM rowing team.

Thank for storming the heavens today with your prayers and well wishes for strength, wisdom, peace, and healing. We have felt the love! Getting out of the PCTU is the next box to check and getting her heart rhythm back to normal. We are not out of the woods yet by any stretch, but we are feeling good about where things are and aiming for a quiet night.

I'd also like to thank and acknowledge my brother Jeff (shot and killed 31 years today) for what I believe to be "working for us from the other side" on a day that is notably hard for my family irregardless of other medical trauma. His heart and other organs were donated to people in need. In his honor, please consider being an organ donor and demand that guns and ammunition be made inaccessible to children in every home, at any and every developmental stage. Thank you.

This Valve Came Out

2017-01-26T15:22:00.001-08:00

Just met with Dr. Romano. Everything went well. Her new valve is in, but we are waiting for her normal heart rhythm to come back. It may take a couple of days. This is always a risk as an intervention has taken place near the heart's conduction system.

This is the old 16mm valve (about the size of a nickel) that came out for us to see (upon my request). It was layered with tissue around it like a big pie crust with a hole enough to move the leaflets of the valve. It is actually pretty cleaned up here. Remember: This was the valve shoehorned in when her heart was the approximate size of a golf ball and she weighed about 12 pounds. Once pathology is done with it, we will take this little gem home with us, but this is what has kept Bernie alive for the past 9 years. Amazing, right?!

Bernie should be upstairs to the PCTU in about an hour.

Valve in and looking good

2017-01-26T14:27:00.001-08:00

Bernie officially has a new 18mm Carbomedics valve in and working. She's coming off bypass now. Transesophageal echo complete. The team in the OR is going to be finishing things up soon.

Will be meeting with Dr. Romano in about 30-45 minutes.

The Hand Off and The Wait

2017-01-26T13:18:00.001-08:00

We left Weber's (hotel) this AM and told Bernie we were going to the hospital.

She said, "I see Nenna". We confirmed that she would see Jenna (Dr. Romano) and that we were going to have some sleepovers to fix her heart at the hospital. "I go do it," she responded.

While driving up the parking structure, she called out, "Strong". At least for those few moments we feel she had a positive outlook on a difficult situation.

Arriving on the 4th floor, we checked in and went back to our pre-op bed space. The pics speak for themselves. Activities below included signing your child's life away, trying to get Bern to agree to the pulse-ox and pic with her fave surgeon Godmother, and waiting for intranasal versed to do it's job (I got to administer half of it as it took a team to restrain and align her).

The breakdown: operation got started at 2:28. I just got a call a few minutes ago that they are through the chest wall, she is on bypass, and proceeding as planned.

Next update in an hour or so.

❤

"I Can't Like It"

2017-01-26T07:32:00.001-08:00

This is Bernie's favorite response when there something in her world she doesn't want. We've adopted this way of expressing disapproval and even though it's harder than hell getting out the door for this sort of affair, we gladly choose it over the alternative of not having a way to fix our baby.

We made it to Ann Arbor yesterday afternoon.

Just trying to savor some easier moments before things really get started.

We have Bernie admitted for handoff at 11:30. The surgery will be anywhere from 4-6 hours and begin around 1:00.

The most challenging part of the surgery will not be actually replacing her valve. It will be getting through the chest wall and through the scar tissue from four other surgeries. There will be a series of brief updates during the operation.

We are very fortunate to have had a series of helpers this week to help with injections both in Ann Arbor and at home. It's not so easy finding pediatric homecare independent contractors in Traverse City! Kathy, Samantha, and Tammy we so appreciate your special attention and willingness to relieve Jeff and I of this extra stress.

Nurse Kathy shows Bernie pictures of her kitty after administering her last pre-op Lovenox injection.

Thank you for the amazing outpouring of support and your messages. We really appreciate this especially since it's hard to pick up the phone and make FaceTime when there so much going on (and we are trying not to verbally surround Bernie with these foreboding conversations). Your connection means and says so much. We love you all!

Thank you for keeping Dr.Romano(her surgeon and Godmother,formerly Hirsch) Dr. Ohye(surgeon on reserve), Dr. Charpie (attending in the PCTU today),the entire pre-op and OR staff, and the PCTU nurses and staff specifically in your prayers.

Support Team Housekeeping Notes

2017-01-24T20:08:00.000-08:00

Thursday

Surgery is scheduled for second case and should begin around 1:00. We will be admitted on Thursday morning.

Meals and Food

Thank you to all of you who so generously have offered to help provide a meal, take some kids, or just about anything. It means a lot. We have a "Meal Train" set up and if you are interested in helping out in the food department you can click here. A new addition to this link is a button to just send some good old fashioned cash as eating at the hospital (if you're not Bernie), transportation, eating at restaurants with 5 people, and incidentals all add up. Thanks in advance if this is a way you can and want to help.

Watching "Moana" before the fire alarm.

HIPAA

Most people understand HIPAA, but just know that Bernie's doctors, nurses, or any other employee of Mott Children's Hospital are not allowed to disclose information about any of the patients to just anyone. I can basically say whatever I want, but in the event that I do not provide information at a rate or in terms of content that satiates your curiosities, please do not try to get information from Bernie's care team or other hospital employee. They just are not allowed to tell you and can lose their jobs for sharing such information. Likewise, they are not allowed to tell you about what may be the matter with other patients who may be close to where Bernie is staying.

Similarly, this blog is where accurate and reliable information will be posted in a timely fashion. If it's not up here, there's nothing more to know at a given time. Check it as often as you like, but there will be no "back or bonus story" available via group text or email chain.

Sisterly love.

VISITORS

In the event that you would like to visit (we usually love visitors!), there are several security measures in place. Healthy visitors need to be badged before you can enter any patient care area. Do not come if you have any cough, cold, or flu-like symptoms. You will have to check in at the front desk in the main lobby of the hospital and again at the security desk on the floor you will visit (we will be on both floors 10 and 11 during our stay). Valet parking is the way to go in my opinion, but it is frequently full. P2 is the name of the structure in which you can park yourself. I cannot guarantee Bernie will be smiles and sunshine and she may just be ornery. Don't take it personally if she doesn't openly love seeing you or something you may bring or act happy you are there.

Knowing What to Say

I've used this article in some of my work with families both in my professional and personal interactions. If knowing what to say is not easy for you, this provides a nice way to at least tell you how to not say the wrong things. It's great for a variety of crisis situations that don't even have to be medical in nature. It's worth the read if you want to click here.

Random dancing with Lucy at home.

What Bernie Likes Lately (in no particular order)

The movie "Annie", Paw Patrol, shark pictures, the movie "Moana", pop music, chocolate, Fergus, swimming, animals, cheeseburgers, matchbox cars, her parking garage for the cars, her sisters, sleeping in the kingdom, her cousins. I'm sure I missed a few. Feel free to post pictures with #healthebern attached to them on Facebook or Instagram with any message or greeting for Bernie and I will show them to her periodically as looking at pictures that include people she loves, herself, or above references is really fun for her.

Sending Stuff

Our mailing address:

Bernice Smith
Michigan Congenital Heart Center
C.S. Mott Children's Hospital
1540 E Hospital Dr
Ann Arbor, MI 48109

Thank you so much for your love and support during this challenging time for our family. We know lots of you have been following our story for a healthy 9 years. If you're reading this far and/or for that long, you must not be sick of us yet and for that we are grateful. Godspeed and Go Blue.

"You surprised, Clark?"

2017-01-19T18:11:00.001-08:00

"You surprised, Clark?"

Yep. Funny I was just having some fun with quoting this movie the night before taking Bernie in for this "maintenance" appointment. We're feeling a little like we woke up with our heads sewn to the carpet regarding the news this week. Although I think I would certainly choose Cousin Eddie visiting in the old "R-V", some crazy relatives, and unwelcome animals over what we have going on this week and for the immediate future.

Just to recap what was on Facebook, we showed up for some dental work under anesthesia on Wednesday as well as our routine ECHO. The dental work was a success: 2 crowns, 1 filling, x-rays, sealants, and a cleaning. Bernie's ECHO showed increasing pressures across her mitral valve, one of several signs that the 16mm CarboMedics valve is getting too small.

Bernie voluntarily participated in her rounds today and wanted the circle of professionals to see her IV. Yay for patient and family centered care!

Taking a deep breath.

Back to the rice table!

Painting Elsie in the Child Life craft room.

We've endured the dreaded Lovenox shots daily this week and it will remain our method of anticoagulation until next Thursday, January 26 when we have Bernie's 5th open heart surgery scheduled to upsize her mitral valve. We are seeking some home nursing help twice a day for about 15-30 minutes so if you have skills or have a good referral, please share it with us. I have some skills, but this can't be one of them at this time. It's hard and stressful and my daughter/patient is not so understanding of the need to maintain these injections that are given subcutaneously (in her abdomen). She's looking like a bit of a pincushion.

Tia came to see Bern off before her cath lab visit.

Her cardiac catheterization validated all of the findings of the ECHO and confirmed the need to replace the valve on the sooner side. In the photo below, the green arrows represent the flow of blood from her left atrium to her left ventricle. The black line in between is Bernie's prosthetic mitral valve (topview). It should be as wide as the space between the blue lines. Clearly it is not that big and you can see how the dyed area in the atrium is darker and seems to be needing more room to flow through the valve.

Coumadin (or Warfarin as the generic) is a very tricky drug to go on and off of since it takes so long to become effective and also be flushed from her system for surgery. We just don't have that kind of time between now and next Thursday.

Bernie in the recovery area after her catheterization.

Although this is not an emergency, it is an urgency. Her pulmonary hypertension is starting to show up again as well and we feel it's better to just get this done now as opposed to waiting as long as 6-8 weeks. The stress of waiting and leading up to the operation can really be a lot to manage and she's already off her Coumadin. We are just going to tackle this one head on.

Dr. Grifka checks Bernie over after the procedure.

in the recovery area.

As you might imagine, I really will not be taking many phone calls or responding to too many messages. I need to spend some quality time with Izzy, Sadie, and Lucy before we leave next week and Jeff and I need to tie things up with work to go on hold as needed. This is where any updates will be posted and know that your comments and love notes are very much appreciated.

Some atheletes from the UM rowing and field hockey teams came for a visit this evening and signed a hat for Bernie. She had just finished 3 eggs, a cheeseburger, grapes, and potatoes!

Jeff and I will accompany Bernie to Ann Arbor next Wednesday afternoon. We are still wrapping our brains around schedules and logistics. This will take time and as meal schedules and coverage for the big kids is established, we will post links to opportunities to assist here.

We know this could be as efficient as being home again 10 days after the surgery or as complicated as living across the state for many months. Time will tell. Thank you for your love, support, good vibes, light, and prayers. Our extended family has lots of health concerns right now beyond Bernie and prayers for healing on many fronts would be appreciated.

As Dorothy Says...

2015-05-27T08:07:00.001-07:00

There is no place like home! Forgive me for the delay in letting you know, but I have been sleeping for most of the last 4 days. Even on our discharge day last Friday, I managed to sleep until 11AM IN THE HOSPITAL. The team wanted to wake me up so badly to give me the news of her qualifying INR of 2.7, but it was obvious I needed the sleep time, especially as I drove home later that day.

Bernie is doing great at home! I even saw her running through the house Friday night when we arrived. This is truly awesome! For someone who wasn't expecting to get back to life for a few more weeks, to see your child running through the house 8 days after her heart surgery with our past experience is STUNNING! As a baby after her last heart surgery, she wasn't even breathing on her own for 6 weeks. This time, she was barely intubated (on a breathing machine) for 6 hours! And then running 8 days later just seems to be more consistent with dreamland than reality. The difference between a baby and a big kid is truly night and day.

Bernie practically jumped into her hug with Lucy and was ecstatic to see her sisters. They all doted on her, doing all of the things she wanted to do for hours. They set up cars with her, took turns reading cards from her class to her, walked around the yard, and asked what she wanted to watch for a change on TV. Doing hard things surely gives us appreciation for the simple, everyday good stuff right before our eyes. I see it in the older girls, too, and seeing grateful kids is truly a blessing.

And of course, she missed her "Good Boy", Fergus, and was so glad to see him.

Hattie Jo also stopped over to see how Bernie was doing. And before we knew it, the big girls had a lemonade stand set up and Bernie certainly seemed to help with the marketing. All in day 9 after surgery!

When I was packing for our hospital stay, I packed full-size shampoo bottles and toothpaste as well as summer clothes. I believe what Dorothy really might say if she had just had her child go through open heart surgery in this fashion: "There's nothing like coming home with nearly full, non-travel size shampoo bottles!" This is the polar opposite of that soak tub described in earlier. Upon washing my hair, I will certainly be reminded that preparing for the worst case scenario is possible to be just that: preparation. Reality often has unexpected goodness waiting for us that we can be extra joyful in experiencing.

I suppose that's our lesson: To expect good things. And to expect surprises. But if you are part of our support team and readership, you've taught us better. We have learned from you that we can expect amazing things. The cards, notes of love, extensions of support in so many forms. You are incredible for all you did to help us get through this only to stand in the sunshine. We are so fortunate to have you. Our next follow up is June 8 in Ann Arbor. We will expect good things! Thank you for everything.

Not today...

2015-05-21T08:54:00.000-07:00

Our INR is only at 1.8 today. We will still be here today and hope tomorrow will be our day so we can push north like everyone else from metro Detroit on a holiday weekend!

I am so sad to have missed my big girls' band and choir concert last night. Jeff was able to get a video of Izzy's first solo though. She told me last weekend that She decided she could finally give it a shot as she said, "If Bernie can do what she did and be that brave, then I can sing a solo."

As soon as I have the links to the snippets from the band segment, I will post those as well. I am very proud of Izzy the the oboe player, Sadie the trumpet player, and Lucy the saxophone player. They have worked really hard and sound great!

Bernie has really enjoyed getting cards, mail, and packages from her fans. Thank you so much for creating nice diversions in our days!

Would you like fries with that?

2015-05-20T18:19:00.002-07:00

We cleared our discharge ECHO and it looks great! We are still looking at a post-op gradient of close to ZERO in that left ventricular outflow track (that number that was around 97 and expected to get as good as perhaps 15-20). Now we are just waiting for her INR (International Normalized Ratio measuring the effectiveness of anticoagulation medication Coumadin/Warfarin) to get high enough (thinning her blood out once again) for discharge. This can take days, but we are hoping for a big jump in the morning from 1.2 today. In plain English, the bottom line is that as soon as that INR lands between 2.5 and 3.5, we can be discharged!

This current hospitalization seems like drive-thru pediatric cardiac surgery to me. I am waiting for the nurses to offer me french fries when they bring other things to the room. Okay, maybe tater tots. They don't have french fries on the hospital menu here in any way. And they totally hold the ketchup captive in the cafeteria as well. Even when you remember to ask for ketchup on a tray, you only get 1 packet. But I digress. The typical pediatric cardiac surgery experience is really less than or about equal to 7 days. This is still so hard for me to believe. Our need for the heparin bridge due to Bernie's mechanical valve keeps us here a little longer, but still! This is typically a very doable hospital stay!

Many of you are probably wondering: Is this it for Bernie? Is she done now with having heart surgeries? That answer would be no. At best, she is up for at least one more heart surgery when she is a teenager. It will likely be the need to replace her mitral valve once again that will drive the scheduling of the next surgery. When she was 9 months old, a 16 millimeter Carbomedics valve was shoe-horned into her tiny heart. It's still working well, but will need to be replaced to get her through adulthood. At the time of her 3rd surgery in 2008, they only made adult valves, but in recent years smaller pediatric valves are being produced. As you could imagine, there is only a very limited portion of the population that utilizes this technology, but I am glad to know this is more of an option for small people.

Enjoy some pics from today. My lovely Black River friends feeding me and keeping me company this past week are all going to heaven. Thanks for the cards, goodies, and love from those of you afar.

Chest Tube Out...Off to the Rice Table

2015-05-19T16:01:00.002-07:00

Another great day! Chest tube was taken out around 10am and once sedation wore off, Bernie was eager to get to the play room. Movie here.

Rice Rice Baby

Bernie's INR was only at 1.2 this AM, but it could not be too close to our ideal levels when taking a chest tube out. It will likely be difficult to jump between 2.5 and 3.5 by tomorrow. We don't need any cardiac monitoring any more so we lost those leads that hang off her body as well as the oxygen. Once we get that INR right, we can then ditch the IV heparin. We should be good to be discharged by week's end as long as her discharge ECHO looks good and that will happen under anesthesia. tomorrow at 8AM in the cath lab.

Thanks for following along! All the love is really appreciated!! We don't get through this stuff alone.

General Care Photo Update

2015-05-18T16:58:00.000-07:00

A rainbow over Mott tonight is beautifully suggestive! Chest tube comes out tomorrow! Home perhaps as soon as Wednesday. We just have to get that INR right as soon as we can after the tube comes out. It would be bad for her to have too thin of blood and pull this big tube from her. Here are some photos of our progress in the past few days. Enjoy!