Thank You...abcdefghijklmnopqrstuvwxyz

I can't begin to name every person who smiled, said hello, asked about Lydia, took care of Lydia, sold me a cup of coffee, checked my orange wristband, punched my floor button on the elevator, handed me my parent badge, etc. etc. etc. but I can give one giant thank you and hope they know they helped us.  They helped us have hope, have faith, have caffeine, have a smile on a day we may not otherwise have wanted to.  

We thank them all from the bottom of our hearts...even our lil' mended heart.

The hospital alphabet: FCH, NICU, PICU, ENT, CARDIO, GI, RT, OT, PT

Thank you to the many doctors we met along the way.  The ones we loved, the ones that wanted to send us home, the ones that wouldn't let us leave, the ones that finally got us here today. 

Allen, Flint, Miller-Smith, Ortmann, Tieves, Vaughan, O'Brien, Gelatt, Goudar, Lay, Madronero, Shah, Swanson, Wagner, Raghuveer, Arganbright, Carter, Olsen, Erkmann, Striker

Thank you to the surgeons that mended, fixed, patched and assisted Lydia so that she could have a beating heart, breathe and eat.  

Her heart beats because of you, Dr.Pastuszko.

She can breathe because of you, Dr. Paulsen.

She can eat because of you Dr. Iqbal.

Thank you to the Fetal Health Center who took care of me, dad, and Lydia and all our emotions from April 10 until she was born June 14.  Dr. Bennett, Jill, Lori, Amy, Brian, Jen and all the nurses who brought me ice chips, Popsicles and chicken broth for 4 days.  

Thank you to each and every NICU, PICU and 4th floor nurse who loved our little Lydia every hour of every day.  There are dozens and dozens of you and I appreciate each and every one.  Especially, Erin, Bailey, Jen (all 3 of them), Stephanie (all 3 of them!), Katie (at least 3 of them!), Whitney, Gayleene, Markey, Wendy and OJ.

And a special thank you to Ruby.  

Even on your worst day, you were happy for us and always had a smile.

Thank you, Mo, for all the red headed pep talks.  

She's a fiery ginger and she'll be your red headed buddy forever.

Thank you to the many security guards who like to act tough but are the kindest guys with guns and tasers I know.  Thanks for the good mornings and good nights each and every day.

Lucy, I'm Home!

Dad and Mom brought Lydia home today!

Monday, August 31, 2015 @ 12:00pm

We came straight inside, got her out of the car seat and walked around the house with her taking pictures and showing her all her things.  She was looking every which way with amazement.  Around 12:30pm the clinical supervisor, nurse scheduler, and nurse arrived.  Oh, so did our official neighborhood nanny ;-) - thanks for coming to love on her Melisa!

After signing more paperwork, setting up machines and getting all the supplies tucked away, we remembered to eat lunch around 3:30pm.  Mom and Dad went straight into G-tube and Trach care, followed by a full head to toe bath.  Did you know they don't bathe these kiddos at the hospital?  Just wipe 'em down with ready bath wipes.  

Now it is 10:00pm and it was officially the quickest 10 hours ever.  Thank you for feeding us, Eric & Katie!  Thank you for the lovely flowers and balloons, John & Erin and Melisa & Glen.

And thank you to everyone for the texts, phone calls, emails, facebook messages, visits, food, drinks, gifts, hugs, tears and prayers today and along the way.  We've been overwhelmed with love, support and generosity from the beginning.  We're obviously not done yet, but we've been through a lot since April 10th when Lydia's heart defect was diagnosed in utero.  Today was a very very very big step in the right direction.  

And now you will get your fill of pictures from today.  Love, Dan, Kinsley & Lydia

  

    

Nurses Play Dirty Tricks

Yay!  So excited!  It's your PCU weekend! Alright! You're going home Monday! Yay! 

Ya, ya, ya...then you give my kid 3 immunizations and hand her off to me for the night and say see ya later.  Dirty Tricksters.  Those shots couldn't have been given the night before?  

So our Parental Care Stay started Friday night around 6pm and we'll be in charge of our own kid until Sunday morning, finally!  We're pretty much rocking it but I swear they give the shots right before it starts to really test your limits.  

Friday Night:  All is good, Dan brings Town Topic for dinner, complete with a cherry shake.  We watch the Royals, we watch the Chiefs.  We do trach care, g-tube care, have a bath, etc.  Around 10:00 Lydia's heart rate jumps up and stay in the 180s and 190s all night.  No fever but she's absolutely fussy.  This continues all night, she won't quit kicking and punching and wiggling herself all over.  She's not getting any sleep, we're not getting any sleep.  I distinctly remember having a slight glimpse of a dream between 12:00 and 1:00, then again between 5:00 and 6:00.  She was better when being held, so I held her and watched Frozen at 3:00, I even sang.

Saturday Morning:  Miss Lydia Fussy Wussy Pants continues the act, complete with vomit requiring another trach care, bath and new outfit.  She passed out from 9:00 to 1:00 but continued her high heart rate.  No one had an answer, she had no fever and she sounded fine.  We tried Tylenol and it did nothing.  Of course I'm getting worried that something is wrong and she'll have to stay at the hospital and we're taking steps backwards.  

Saturday Afternoon:  Lydia was coughing more and having more secretions in her trach.  We were suctioning a lot, with and without saline.  Nothing helped her.  So, Dan showed up about 2:45, we quickly did a trach change together, our first, and we had a happy smiling baby in minutes.  Her heart rate is still high but is settling closer to the 160s and isn't much concern right now.  That is our first experience with a mucus plug in her trach and luckily it wasn't as frightening as I thought it would be.  Everything to do with a trach is a little easier to handle when there is no vent involved.  

Saturday Night:  I escaped and got us Manny's for dinner.  We watched the Royals and we're watching Sporting.  Lydia is snoozing and her heart rate is down to the 150s.  Let's keep this show on the road and make no pit stops.  Hoping for a few more minutes of sleep tonight, then home tomorrow to make sure everything is ready to bring our girl home on Monday.

Goodnight.  

Tell the World I'm Coming Home...Soon!

Our House

I'm Coming Home

Home

Feels Like Home

Home

Mama I'm Coming Home

Smiles!

Ah, the life.

Welcome to my living room

Dan and I had an emotional evening as we disassembled Lydia's darling nursery and relocated it to the living room.  We prepared that room together and were excited to bring her home to it.  Now the bulk of her necessities are in the living room.  

When we go home we'll have 24/7 nursing care for 2 weeks and we'll wean back to 16 hours.  We will have anywhere from 4 to 6 nurses visiting our house during the week to cover daytime and overnight shifts.  This will last until Lydia no longer needs the trach or the g-tube for life sustaining reasons.  

It's all a blessing in disguise, I'm sure.  It's just hard to imagine life at home with strangers that will eventually feel like family.  We thought it best to relocate her to the living room so we have a common level of the house to share with the nurses.  They'll need the lights on, they'll need the kitchen, they'll need a place to sit, and this way it's easier than hearing someone in the hallway all night long.

So I cried when we took the crib out of her room.  I cried when we moved the love seat to her room.  I cried when I took this picture.  I cried when thinking about where the Christmas Tree would go.  Then I smiled.  She's coming home.  She can still hang out in her room and pick out her clothes with mom.  She can be with us all the time and not even have to go to her room for naps.  She can wake up to and fall asleep to the glow of the Christmas Tree. 

Welcome to my living room.

Carole King even wrote a song for this occasion...

Welcome to my living room
It's not a womb, it's not a tomb
Not a June bride or a December groom
Tonight, here in Hyannis, we'll be playing at a reasonable volume
Here in my living room

I'm gonna play some songs for you
There are so many I'd like to do
If I don't get to them all, I hope you'll forgive me
'Cause I'm 62, and there's so many I'd like to do, old and new
But I'll try to do all I can in the time they give me

Let's set aside all the fussing and fighting
And make this night about songwriting
Sing and play some favorite tunes
Welcome to my living room

She's so awesome

Dan and I take pictures of Lydia while we are visiting her separately and text the other one. 

Our typical reply to each other is she's so awesome.  

And, she is. 

It's hangin' on when your heart has had enough

What will break me?  What will make me cry in front entire blue team during rounds?  What will make me kick the doctors out?  What will make me physically move away from the gentle touch of a nurse?  What will make me drop the f bomb in front of my own mother?  

Apparently all it takes is for the very kind lady checking Lydia's G-Tube site for granulation tissue to say try not to put her in clothes that are too tight on her belly, maybe just leave the onesie snap open.  I've really kept it together pretty darn well for 10 weeks, but this gets me?  Ah, hell no!  My child will NOT wear a onesie with a snap undone.  I lost it.  Seriously, Kinsley?

The idea of her not being able to wear 2/3 of the newborn to 3 month clothes she has in her closet and I'll end up donating brand new clothes with tags on them that I really wanted to see her in...

The idea of her having to wear her onesies differently because of her G-Tube and her not even being able to wear typical onesies in the hospital because of the cords...

The idea that I've met way too many people, made way too many phone calls and completed way too much paperwork this week...  

The idea that I rocked the trach change myself this morning and want to take her home now and can't...

The idea that I have to have 1 diaper bag, 1 emergency bag, 1 suction machine, 1 apnea monitor, 1 pulse ox monitor and Lydia to haul around in a stroller...

Nope, just the onesie comment.  

I put myself together and proceeded to lose it again with the resident, the discharge nurse, the nurse practitioner, and the cardiologist.  These are all terribly nice people who were understanding and said I had every right to breakdown once in awhile.  I ensured them I was not angry at any one of them and that I was just having a bad day, but they didn't leave me alone so I pretty much told them to get lost.  Mom says I said the f word.  I honestly don't remember, but I bet Mom covered Lydia's ears!  

Then, in true Kinsley fashion, I fixed my face, pulled on my big girl britches, and met a home health care nurse 5 minutes later and was polite and professional the entire time.  I then apologized to everyone I could find on the way out of the hospital.  I really feel awful and might make them all cookies.      

I can do business, I just can't do onesies.  

"In My Daughter's Eyes"

by Martina McBride

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe 
In my daughter's eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daugter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

Going Local...Jets...Poop

Take that Starbucks and Seattle's Best!  

I've been at the hospital too long when I've had the chance to witness CMH requesting comments on their coffee selection, evaluating the comments, then fully implementing a new provider.  Starbucks is offered in the Express Cafe and Seattle's Best (still SBUX) is offered in the Orbits Cafeteria.  This week a magical thing happened and a great big airplane sign went up in the cafeteria.  The Roasterie has landed!  None of this was or is fancy, sugary drinks, just a cup o' joe, but I prefer and am grateful for the Roasterie.  

In other airplane news... 

The Kansas City Airshow is this weekend at the Wheeler Downtown Airport.  As Nurse Amber and I were preparing Lydia's emergency trach bag to carry with us everywhere, extremely loud jets flew by and caused us to jump a bit.  I've seen numerous sorts of fighter jets fly in between Lathrop & Gage and The Hyatt.  And, now you know our view from Room 6.  We also have a popular nesting spot for pigeons and lots of poop.  

Lydia is awesome and doing great! 

What are we waiting for?

"Mom, Dad, I'm ready to go home now."

Lydia is indeed ready to go home.  This Friday she will be stable for two weeks with her trach and that is way long enough to be discharged.  The hold up is training mom and dad and setting up the in home nursing.  To set up the in home nursing I have to complete tons of paperwork with 3 different people, which I am working on tomorrow and Wednesday.  The training is just us being there for trach care and practicing with the nurses.  Lydia's first trach change was Friday, which Dan observed.  I need to observe one and we both need to complete  at least one, maybe two.  We can't just change her trach a few times one day and be finished.  It's something we can only do about twice a week.  After that we have to do a 24 or 48 hour parental care stay and then we'll bust outta there!

So, in the meantime, who does she look like?

MOM

LYDIA

DAD

LYDIA

    

Loving Holland

"Welcome to Holland" has been shared with me a few times throughout my pregnancy and Lydia's hospital stay.  At first it made me cry to read it, then it made me accept things, and now when I read it I feel pride.  Pride in Lydia for tackling such big obstacles.  Pride in Dan and I for how we've handled all this.  Pride in the life we have with Lydia and the memories we'll make together.  I'm sure Italy is fabulous and I bet we visit there eventually, but for now, I'm loving Holland.    

Welcome to Holland

by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Those Cheeks!

Whether or not to give your 2 month old baby a trach is a very difficult decision.  The doctors know it's what is best and so do you, but none of that makes it easier to face.  

What makes it get easier is when you see her face for the first time since birth with no stickers or tubes on it.  When you see her sleeping peacefully, not needing to be positioned appropriately in order to breathe.  When you see her chest rise and fall in steady, even, slow breaths, instead of her entire torso retracting at a rapid pace.  

Lydia is so much happier and healthier after having this procedure.  I thank her doctors for truly making this a last resort and giving her a chance to do it on her own, but in the end, I thank them more for guiding me down the right path for Lydia.  

Just look at those big blues eyes, and those cheeks!

Surgery # 3 in 8 weeks time.

As prepared as you think you are, you're never really prepared.  Third surgery in 8 weeks. 

Wake up at 4:30am, drive downtown at 5:30am, get to her bedside at 6:00am, sign all the papers at 7:00am, take her to surgery at 7:15am, wait, wait, wait, doctor comes to talk to us at 8:45am and we're at her bedside again by 9:45am.

Lydia's tracheotomy went perfectly and there were no complications.  She's back in bed and breathing easy with the help of a ventilator.  She'll stay on the vent for a few days until she heals, weans off sedation, and adjusts to her new airway.  Over about the course of a week or two, RT will adjust her settings and wean her off and hopefully she won't need any vent support.  If she does, oh well, help a girl out.  

There is one thing no one thought to tell us in all our trach conversations over that last week, and there were many, at least 7 or 8.  I read up and researched some, but never came across this information and didn't think to ask about it.  In hindsight, I feel dumb for not asking.  Lydia is currently on the vent, therefore wearing a cuffed trach, and cannot make noise.  That is really heartbreaking to find out after surgery, and I'm sure it would have been just as heartbreaking before.  Here's one big gigantic hope and prayer that she will be off the vent sooner rather than later so she can grow out of a cuffed trach into a cuffless trach.  

Cuffed and Cuffless Trachs:  http://trachs.com/cuffed-and-cuffless-tracheostomy-tubes/

Tracheostomy

Lydia's Tracheostomy is scheduled for Monday, August 10, 2015 at 7:30am.  

FIGHT SONG

"This is my fight song. Take back my life song. Prove I'm alright song.

My power is turned up.  I'll be strong.  I'll play my fight song.  

And I don't really care if nobody else believes.  

Cause I've still got a lot of fight left in me."  

Rachel Platten

On a lighter note...

On a lighter note, Lydia is going to have some pictures taken at the hospital today or tomorrow.  It stinks not having "official" newborn pictures, so since she's still the size of a newborn, I'm going for it now!  I have a couple cute outfits for her and an entire owl motif.  She has a Taggies Oodles Owl lovey, blanket and ball.   

Ball was given to her by Mommy and Daddy.  

 Blanket was given to her by Nana and Papa Riggs.

Lovey was given to her by Mama and Papa Krupich. 

The Scariest Word in the PICU

To me, the scariest word in the PICU is tracheotomy or tracheostomy.  

It's no longer the word I overhear when passing another room.  It's no longer the word I almost curse at ENT for casually dropping in the middle of a conversation about Lydia.  It's no longer the word I can fear.  It's soon to be our reality.  

Lydia was scheduled to come home Sunday, but as of Saturday she started to show more signs of stress according to numbers on monitors and tests, but not to look at her.  Over the past few days she is showing outward signs of stress.  She's not the happy, wiggly, almost smiling girl from last week.  She's exhausted and fussy and needs help.

Her breathing is still very labored due to the malacia which elevates her heart rate.  Lydia is essentially working like she is running on a treadmill all the time, no breaks, no rests, no off switch.  She's been doing this for close to 5 weeks.  She can't step off the treadmill.  

What really convinced me that she needed help was her blood gases.  Blood gas measures the pH, CO2 and O2 in the blood and tells you if she is able to handle the gas exchange herself.  Lydia's pH is good, but her CO2 levels are high, which leads to high bicarbonate levels.  Your kidney holds on to bicarbonate to fight the CO2, or even out the pH.  Lydia's bicarbonate is high.

The solution?  Tracheostomy.

Currently Lydia is mildly sedated, more like she's on a good muscle relaxer, so that she can wear a clear breathing mask over her entire face.  Without the relaxation she is crying and cranky and won't sleep.  We all joke in the PICU that she can be any hero she wants when wearing the mask.  A scuba diver, a fire fighter, an astronaut.  This mask is pushing air into her lungs and breathing with her to provide help with the gas exchange.  She's also hooked up to some sort of CO2 monitor that the name of escapes me because I can't stand her pulmonologist and I forgot to write down what she called it.  Anyway, it proved that her CO2 was on the rise for a 12 hours period and now it's lowering with the mask.  It's giving us some time to schedule the tracheotomy.    

Today her heart surgeon is doing a CT with contrast to make absolutely sure it's not her heart causing respiratory problems before we trach her.  If it saves her from a trach :)  If it means a problem with her heart :(

The up side?  The silver lining?  With a trach, Lydia will be able to breath easier, lower her heart rate, pack on the pounds and try to feed orally sooner rather than later.  With a trach, Lydia may or may not need a ventilator.  Trach alone may help her breathe enough to grow out of the airway problems.  If by chance she needs a ventilator, it too is something that may not be needed 24/7 and she will wean off of as she grows.  It's all very scary to me, but I'm plastering my brave face on as much as I can and reminding myself that it's all temporary while she grows.

As we are learning about this it is a bit mind blowing.  I'll keep updating as we know more.

According to Johns Hopkins Medicine:

A tracheotomy or a tracheostomy is an opening surgically created through the neck into the trachea(windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs.  Breathing is done through the tracheostomy tube rather than through the nose and mouth. The term “tracheotomy” refers to the incision into the trachea (windpipe) that forms a temporary or permanent opening, which is called a “tracheostomy,” however; the terms are sometimes used interchangeably.

Sunday Came and Went

Lydia is 7 weeks old today!  

Mom and Dad were supposed to take Lydia home today, but that idea came and went pretty quickly.  Wednesday we were told she would be discharged from the PICU.  Thursday we began the discharge planning.  Friday we were trained on G-Tube and Oxygen.  Friday I did my 24 hour Parental Care Stay and Dan did his Saturday night.  We decided to do them separately so we were both confident in ourselves concerning all of Lydia's special care.  I took Dan's truck home last night so we could come home together today.  Mom was going to take me to the hospital around 11am.  Dan called at 8:21am and said get here, they don't want to release her.  Not the news I wanted to hear, so Mom rushed down to Olathe to pick me up and take me to the hospital since I wanted to keep hope alive that she'd come home today and not be stuck with two cars at the hospital. 

Lydia is still doing great and her condition hasn't changed, in fact she's better.  Her breathing is a bit easier and slowing down and she's wiggling around like a healthy baby.  Best news of the day is that she's gaining weight, weighing in at 7 pounds 4 ounces!    

The ICU doctor this weekend hasn't been attending or seen Lydia in a while and she was hyper-sensitive to Lydia's baseline.  The concerns are her elevated heart rate, quick breathing, frequent spit ups through her nose which she isn't technically supposed to have happen with the fundo, and her upper airway issues.  Separately these are not concerning and the doctors are okay with it being her baseline, but put them all together and they can be concerning.  Say for instance she spits up, aspirates into her airway, does she or doesn't she have the lung and heart reserve strength to recover?  Well, we don't torture babies to test things like that!  

We know that it's better to be safe than sorry, but it's so sad that she is supposed to be asleep in her own bed tonight.  She was supposed to be all cozy on the couch with us tonight watching Food Network Star.  Luckily her heart surgeon was there today and came to talk to us and put things into perspective.  He said to look at it like this, it's frustrating and you just want her home, but in the grand scheme of her life, a little more time isn't a lot to ask to make sure she is safe and can have a life.  We've all worked so hard to keep her safe, you don't want to take her home and have something happen that lands you right back in the ICU.  

So tomorrow we'll find out more about Lydia.  Neonatal is going to weigh in on her baseline since they see more babies with g-tube/fundos and laryngomalacia.  ENT is going to weigh in on her airway.  Surgery is going to weigh in on her g-tube/fundo.  That is the critical piece.  They will insert a dye to see if and how badly it refluxes, this will determine if the fundo is working correctly.  If it was, we'll go down one path.  If it's not, we'll go down another.  Praying that either path leads us in a direction of safety first...then home.