Happy Girl

"Happy Girl" by Martina McBride

I used to live in a darkened room
Had a face of stone
And a heart of gloom

Lost my hope, I was so far gone
Cryin' all my tears
With the curtains drawn

I didn't know until my soul broke free
I've got these angels watching over me

Oh watch me go
I'm a happy girl
Everybody knows
That the sweetest thing you'll ever see
In the whole wide world
Is a happy girl

I used to hide in a party crowd
Bottled up inside
Feeling so left out

Standing in a corner wearing concrete shoes
With my frozen smile
And my lighted fuse

Now every time I start to feel like that
I roll my heart out like a welcome mat

Oh watch me go
I'm a happy girl
Everybody knows
That the sweetest thing you'll ever see
In the whole wide world
Is a happy girl

Laugh when I feel like it
Cry when I feel like it
That's just how my life is
That's how it goes

Oh watch me go
I'm a happy girl
And I've come to know
That the world won't change
Just 'cause I complain
Let the axis twirl
I'm a happy girl

Oh watch me go
I'm a happy girl
Everybody knows
That the sweetest thing you'll ever see
In the whole wide world
Is a happy girl

Oh, yeah
Oh, yeah
I'm a happy girl

We're Rule Breakers!

The line has been drawn in the sand...

The teams have been chosen...

Who will win?  

The PICU and ENT doctors or The Cardiac doctors on the 4th floor

Every PICU doctor and nurse wants Lydia to go home!  Not kidding.  Dr. Allen, Dr. Vaughan, Dr. Ortmann, Dr. Miller-Smith and Dr. Flint have all either transferred her to the floor already or have tried to transfer her this week.  The Cardiac doctors still are scared of her breathing.  When you meet Lydia you'll know what this is all about.  She's a noisy kiddo and will be until she grows into her upper airway and can control her breathing a bit better.  

After I spoke with our patient advocate yesterday, she was immediately on the phone with Dr. Flint.  Lucky for us Dr. Flint was just as frustrated that the 4th floor wouldn't admit Lydia.  By the time we met up that afternoon, Dr. Flint had consulted all the appropriate parties and made the decision that Lydia would be discharged from the PICU, not the 4th floor.  This doesn't happen much.

We're rule breakers and proud of it.  We're coming home soon!  There is still a lot of training and things to check off, but the end is near.  Yippy!!!  Yay!!!  Now for the checklist.  We will have g-tube care and feeding training, oxygen training, monitor training, CPR training and a carseat screening and test before we checkout.  Lydia is coming home on oxygen, but who cares if our lil' diva needs a whiff of O2 to keep her happy, she's comin' home!

Now for picture overload!

   

God Bless Lydia

Dan and I finally decided to have Lydia baptized in the hospital.  It is probably something we should have done as soon as she was born.  However, we delayed and agreed that it was time.  Lydia received the Sacrament of Baptism in the Catholic Church on Wednesday evening.  Dan and I were present, along with Grandparents.  Father Dennis Ryan of Our Lady of Perpetual Help Redemptorist Catholic Church performed the ceremony.  We were unable to go to the Chapel, so Lydia was baptized in her PICU Room 35.  

Lydia will have a more formal baptism ceremony later on at Prince of Peace Catholic Church where her Godparents, Brian and Jennifer Krupich, can be present, along with the rest of the family.  We planned for her to wear the gown my grandmother made for me, but we settled for just the white lining since she wanted to be swaddled tight right beforehand when this picture was taken.  Lydia will wear the full eyelet gown at her ceremony later on.   

God has touched your life, sweet Lydia Rose, and has saved you by His grace.  Now being baptized in His name and walking in His ways, we pray that you will come to know what God has planned for you.  

PICU vs. the 4th Floor ... the saga continues

The PICU doesn't want us because we don't need to be here.  Lydia has been very steady for 2 plus days and is just hanging out with her awesome nurse.  The 4th floor, the Cardiac floor, is afraid to take her because she breathes fast and is pretty noisy.  She'll grow out of it, but do they expect us to move into the PICU and outgrow it here?  Come on!

I contacted our Patient Advocate to help us through the hospital chain of command.  The ICU and ENT doctors are ready to sign off and send her home.  The cardiac floor is afraid to take her and we have to go there before leaving.  I talked to her surgeon this morning who is encouraging me to stay calm and is saying that time will solve all problems.  I do know this, but does that time have to be spent at CMH?  

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning do to do afterward.”  -Kurt Vonnegut

“To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.” -T.F. Hodge

“And I got out of there without punching anyone, kicking anyone, or breaking down in tears. Some days the small victories are all you achieve.”  -Molly Ringle

What are we trying to solve in the PICU?

A lot has been happening, jumping between floors and doctors at the hospital, so what is it we are really trying to solve in the PICU this week?

Current Issues we are addressing:

1. Lydia is and has been Tachypneic since her heart surgery.  She takes more than the average 40-60 breaths per minute that newborns should take.  This is why we need her to grow so she can get a handle on her breathing.  There is added difficulty for Lydia because she has upper airway issues that she also needs to grow into.  

2. Lydia has an Ectopic Heart Rhythm as of Saturday morning.  It's possible that an early heartbeat is coming from a premature atrial contraction, meaning the upper chambers of her heart are setting her rhythm instead of her sinus node, or natural pacemaker.  This can be treated with beta blockers but ICU docs aren't convinced this is an accurate diagnosis yet.  Other reasons for an Ectopic Heart Rhythm could include fever (no fever!), infection (blood cultures currently in lab), or it's not an uncommon thing for heart babies to have.

3. Weight gain, always weight gain.  If I could, I'd add protein powder to her breast milk.  Essentially we are already doing that by fortifying her breast milk with Enfamil and giving her the maximum amount of feeds she can handle.  I hope having lots of snuggles and her favorite ICU nurses around will make her feel like packing on the pounds this week.   

Forever Young

May the good Lord be with you
Down every road you roam
And may sunshine and happiness
surround you when you're far from home
And may you grow to be proud
Dignified and true
And do unto others
As you'd have done to you
Be courageous and be brave
And in my heart you'll always stay
Forever Young, Forever Young
Forever Young, Forever Young

May good fortune be with you
May your guiding light be strong
Build a stairway to heaven
with a prince or a vagabond

And may you never love in vain
and in my heart you will remain
Forever Young, Forever Young
Forever Young, Forever Young
Forever Young
Forever Young

And when you finally fly away
I'll be hoping that I served you well
For all the wisdom of a lifetime
No one can ever tell

But whatever road you choose
I'm right behind you, win or lose
Forever Young, Forever Young
Forever Young ,Forever Young
Forever Young, Forever Young
For, Forever Young, Forever Young

-Rod Stewart

It's like we're on the Zambezi Zinger

What a roller coaster ride of emotions and hospital floors this week.  It's been a difficult week full of ups and downs, mostly for mommy since I'm the pessimist and realist in this situation.  I hope for the best and prepare for the worst so I've been down some pretty scary roads in my mind this week.  

Sunday Lydia was taken to the floor and we had a couple of really good days, we even met Alex Gordon.  Tuesday afternoon Lydia had a breathing episode and went back to the PICU.  I think she loves the PICU and all the love she gets there.  Friday Lydia went back to the floor and had a good day.  Her feeds were increased to help her gain weight and she was still on oxygen so she didn't have to work so hard.

Even a shorter stay on the 4th floor this go around.  Lydia came back to the PICU early this afternoon.  Daddy was here early for her 6:00 am feed and they snuggled.  When he left everything was okay and she was sound asleep.  Within an hour her heart rate increased and her breathing escalated again.  She was fussy and being held until I arrived around 11:00 am.  She was in and out of sleep and very hot and clammy.  Down we came to the PICU.  

Once she arrived she was assessed, swaddled up good and tight and calmed down without much trouble.  The ICU docs aren't giving her anything for pain except occasionally Tylenol and are letting her relax on her own today while trying to find the reason for the elevated heart rate.  

On the 4th floor they don't like to let things ride and play out.  They also don't seem to think that an upset and fussy baby could just be upset and fussy.  I kept saying that with her increased feeds she seems gassy.  They didn't want to give her anything or vent her.  With the g-tube, Lydia doesn't burp, instead we vent her tube.  In the PICU I say she's gassy and they give her a gas relief medicine, they vent her with success multiple times and she has a blowout.  Yep, I told you she was gassy.  She's done fairly well this afternoon and seems happier, we just need to figure out the heart rate. 

The lack of weight gain is still very worrisome and troubling to me.  She's on more fortified breast milk than is typical for a baby her size and she's just hovering around her birth weight.  She gained before both surgeries and lost after both surgeries, but now she's just holding pretty steady.  What do we do to get her to gain weight?  We need her to breathe easier.  What do we do to get her to breathe easier?  We need her to gain weight.  It's a vicious cycle and no one seems to have an answer. I'm at my wits end trying to get answers and figure this one out.  The best answer we have is to give her time...have you met me?  I don't like that answer!  Patience, Kinsley, patience.

So today we request your prayers for Lydia to rest and sleep peacefully while being able to start gaining weight.  We need her to grow!  Just some grams would be nice, small steps forward.  Thank you for all the continued thoughts and prayers.  She has an army of prayer warriors sending up prayers each and every day that are keeping us all courageous and brave.

“Do not pray for an easy life, pray for the strength to endure a difficult one”  - Bruce Lee

We missed you, PICU.

Sunday: Lydia 2 days post-op, on pain meds, steroids, anti-reflux and lasix.  Had such a good day and was breathing so well she moved to the floor.  All was good.

Monday: Lydia 3 days post-op, on pain meds, anti-reflux and lasix.  Had a good day and Dr. wanted to send her home by the end of the week.  All was good.

Tuesday AM: Lydia 4 days post-op, on anti-reflux.  Had a good morning and Dr. wanted to send her home by the end of the week, but perhaps on a teeny tiny bit of oxygen.  All was okay.

Tuesday mid-day: Lydia 4 days post-op, on nothing.  Had a good morning but had a little coughing spell in the early afternoon which upset her and quickened her breathing.  Her stats never dropped.  Got every one's attention.  Everyone (RNs X2, APRNs X2, ENT X2, RT X2, OT X1 and Dr. X1) started listening to her, poking at her, assessing her, turning on the lights, undoing her swaddle, x-rays on her chest and scopes down her nose.  The girl was pissed off and crying...thus irritating her already irritated throat, sore tummy and heavy breathing.  

Momma gets worked up and goes straight to worst case scenario, way past reality.

Daddy gets worked up and goes to optimistic, stop messing with my kid, she'll calm down.  

We were warned that more work while breathing or noisier breathing would land us right back in the PICU and so we went.  The minute she was in her new room with the awesome TLC of the PICU nurses, she was quieter, sucking on a pacifier and dozing off to sleep.  The ICU Dr. last night was great and immediately put her on a pain meds, steroids, anti-reflux and lasix.  The child is five weeks old, maybe she needed another dose or two of something to keep her comfortable.  She was sleeping soundly without a care in the world by 7:30pm and still was at 11:00pm when I called in to check on her.

Every thought, hope, wish and prayer is going towards a calm morning, an uneventful afternoon and a peaceful evening.  Lydia likes the PICU resort and spa, so let's stay another day.  I can live with that.       

Have you met our friend Alex?

Knock! Knock!  Who's there?  Alex Gordon!  Royals Charities and 10 players and their wives showed up to show the kiddos at Children's Mercy some love today.  I was getting Lydia out of her swing when I heard a knock, turned and saw Gordo smiling in at us.  Definitely perked us up...well, it perked me up.  Lydia was cranky because she had a poopy diaper just as he was coming in.  We'll work on her timing later!  

So he hung out for a while, we had lunch, he changed her diaper, etc.  No, I'm kidding it was a pretty brief visit, but a happy one none the less.  It went about like this after introductions and awkward jovial talk about why she was crying:

A:  Who do we have here?

K: Lydia.

A: Hi, Olivia.

K: No, Lydia.

A: How old is she?

K: 5 weeks

A: I have a toy for her.

K: Thank you!

A: Think she'll want a ball cap or a shadow buddy?

K: Shadow Buddy sounds good. 

{Alex explains shadow buddy and autographs it}

{Kinsley retrieves phone for picture}

A: Where do you live?

{K: 1*0*3 W. 1**th Terr, want to come for dinner?  Will you bring Salvy & LoCain?} 

{A: Sure, but what if Moose and Dyson want to come?}

K: We live in Olathe.

A: We live in Overland Park.

{Kodak Moment}

K: Thanks for coming!  Great to meet you.

A: You're welcome.  Hope you get out of here soon.  See you at the ballpark!

Totally forgot to ask about the man's injury and how he was feeling.  Oh well

Salvy and LoCain must have gotten their days mixed up and forgot they were visiting us today.  They'll probably show up tomorrow. HA!

http://www.shadowbuddies.org/

Mom has hurdles, too.

Did I tell you all we moved out of the PICU to the Cardiac floor on Sunday?  We did!  It's a huge step toward coming home.  Lydia is not under a 24 hour watch, she has two to three nurses in her pod and is checked on when needed and for assessments and feedings.  We are so happy to be there, though it's a bit overwhelming at first.  We're so used to having a nurse in her room to wait on her hand and foot and now we're transitioning into typical baby care.  We can handle this, but on day one it was like they flipped a switch from night to day.

Enjoying her glow worm.  Thank you Katie and Keeley!

I came home from about 8 hours at the hospital and threw myself a pity party last night.  Your invite must have been lost in the mail!  Dan is the only guest who showed up, but mom joined in via text!  Lydia's MIC-KEY button g-tube and fundoplication change things.  She doesn't need all the lovely handmade burp clothes we were gifted because she doesn't need to be burped.  She doesn't need all the tiny "I love mommy" bibs we were gifted because she doesn't feed orally.  Comfy onesies and zipper pjs aren't ideal because we need access to her MIC-KEY button to feed every three hours so two-piece outfits and pjs with snaps are best.  I keep telling myself that ENT has approved trying oral feeds, which means OT will start to work with her eventually and she may be able to feed from a bottle down the road.  

Love seeing this every morning and night!  Thank you Kate!

After lots of talking, texting and crying I realized that I was wallowing around in a pool of pity and snapped out of it.  Lydia is not two months old and has fought through numerous pokes and pricks, tests and assessments, 3 intubations and extubations, open heart surgery, a supraglottoplasty, fundoplication and gastrostomy.  I need to buck up and look at the bright side, for now, she won't be a messy eater.  No baby spit up on me!  

Lydia has pretty dramatic hand gestures.  "I' m getting verklempt talk amongst yourselves!"

During all this I went for a late walk to think through things.  I went through all the whys that still creep in from time to time: why me, why her, why us, and coached myself out of them.  None of the why did it happen matters.  It happened.  The only thing that matters is that Lydia was given to us as our sweet baby girl and we were chosen to be the parents of this beautiful special tiny person.  She's is amazing and is going to bring great joy to us every day.  That's the good stuff!  

       

You're Gonna Hear Her ROAR!

It is absolutely amazing what a 41 day old baby can handle.  She's a fighter.  She's our hero.  These photos are from about 2:00 pm yesterday, so 3 hours post op.  

Option 4 happened yesterday.  We met with the general surgeon, the anesthesiologist, and the ENT doctor between 8:00 am and 8:45am yesterday to discuss all that would happen and sign all the papers.  I carried Lydia to the operating area around 9:00am with daddy at our side and the transport team on our heels.  She was sound asleep and was hopefully dreaming about all good things for the next couple of hours. 

After the anesthesiologist put Lydia to sleep and made her dream a little more, the Bronchoscopy happened first.  The ENT doctor met with us around 10:00 am to explain she had completed the supraglottoplasty to help the laryngomalacia and that her trachea and bronchial tubes look good.  It was confirmed that Lydia has a bifid uvula and a slight submucous cleft that will have to be repaired later so that she doesn't develop hypernasality, basically a nasal sounding voice.  By 11:00 am the surgeon met with us to discuss the fundoplication to stop the reflux and the gastrostomy to deliver feeds.  Both went very well and Lydia was out of recovery and back in her room by 11:15 am.  

She had the hiccups for about 20 minutes, which could not have felt good, but she was still sedated and sleeping.  She began moving her tongue and playing with her breathing tube around 12:00 pm and was opening her eyes by 1:30 pm.  The breathing tube was out around 3:00 pm and nurses started using the MIC-KEY button to deliver meds.  She started her feeds in very small amounts around 7:00 pm and should be gaining weight in no time.

The PICU doctors and ENT will evaluate her for a few days and if she's breathing well she should be moved to the 4th floor "soon."  I know, we've said that before!  Home by August?  That's our hope.  

You held me down, but I got up
Already brushing off the dust
You hear my voice, your hear that sound
Like thunder, gonna shake your ground
You held me down, but I got up
Get ready cause I’ve had enough
I see it all, I see it now

I got the eye of the tiger, the fire, dancing through the fire
Cause I am a champion and you’re gonna hear me ROAR
Louder, louder than a lion
Cause I am a champion and you’re gonna hear me ROAR
Oh oh oh oh oh oh
You’re gonna hear me roar

Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero 

~Katy Perry

Surgery Tomorrow

The girl gave it a good try, but she unable to handle oral or nasogastric feeds and she has to gain some weight.  There are many pieces to this puzzle and I'll do my best to show how they are all woven together and depend on one another working in order for her to come home.

Lydia is currently receiving feeds through a nasogastric tube that deposits into her intestines so there is nothing in her stomach to throw up since she is refluxing.  She is handling these feeds well and still having episodes of refluxing stomach acids.  Her laryngomalacia makes this very dangerous because she could aspirate into her trachea and lungs.  Healthy babies can handle this but with all that Lydia has been through and her small size, she is breathing very quickly and shallow.  Lydia is not gaining weight quickly because she is burning so many calories breathing.

We are left with Option 4, a Gastrostomy Tube and Fundoplication.  Lydia will have surgery tomorrow to insert a Gastrostomy Tube through her abdomen to deliver feeds directly to the stomach.  It will help her get the calories she needs to grow.  The Fundoplication is a procedure in which the upper portion of the stomach is wrapped around the lower part of the esophagus.  It will help stop the reflux so that she can keep her feeds down, instead of refluxing and aspirating.  While she is under anesthesia, ENT will complete a Bronchoscopy on Lydia's airway, looking at all pieces to ensure there are no issues besides laryngomalacia.  It is also at this time ENT will decide if the laryngomalacia is something she can grow out of or if she needs a supraglottoplasty, cutting the aryepiglottic folds to let the supraglottic airway spring open.  If the supraglottoplasty is needed, ENT will do it right then and there.

Essentially, we are fixing the reflux issues (that wouldn't be an issue if it weren't for the breathing troubles) because of the breathing issues (that can't be fixed without growing hence the g tube).  I apologize for the world's worst sentence!  The game plan after surgery is two-fold.  If all goes well with the fundo and g tube feedings, she should be feeling better from that procedure and feeding well in a few days to a week.  At that time she will need to have her breathing under control and her oxygen saturation levels above 88 for a given length of time.  

Then home...we hope.  Crossing our fingers and praying that we have no more surprises.  The heart surgery was terrifying, intense, monumental, but expected.  We had almost three months to prepare ourselves.  We had discussed it with many nurses, cardiologists and surgeons.  After her chest was closed we only had a few more obstacles and we would move to the cardiac floor and teach Lydia how to feed.  It was predictable and by the book.  The last week has been emotional, draining and frustrating.  We went from hearing that she would move to the cardiac floor Monday afternoon to hearing that she needs a surgery for a g tube all in a 24 hour period.  Now we have had to prepare ourselves, do our research, get our questions answered and accept that our baby will not feed orally for an undetermined amount of time all in 3 days.  It's been a tough week, but we're looking forward to watching Lydia grow at home, with her family, in her own bed, wearing all her cute outfits.      

Lydia is one month old today!

Such a big miracle in such a little girl.

  We love you, Lydia.

Feeding Troubles

Lydia has had a few episodes of emesis (vomit) in the past few days.  This is concerning because her laryngomalacia (floppy larynx) could cause her to aspirate, or get the vomit in her lungs when this happens.  We have changed the placement of her nasogastric feeding from her stomach to her intestines to see if she handles it better.  So far so good, but that means she may be having a re-flux reaction to feeds in her stomach.  

What's all this mean for Lydia?

OT says it is not safe to try to bottle feed her right now, so that is on hold.  ENT did an upper GI study on her today to ensure there are no blockages or other issues.  We have switched her feeds from every three hours to continuous since intestines are not used to separate feeds like stomachs are.

Dr. Vaughan, my favorite ICU doctor, says there are 4 options for feeding Lydia and we are working on finding the best and safest one for her.  Option 1 is Lydia feeding strictly from a bottle, but it is off the table since it is not safe for her right now.  Option 2 is a hybrid of bottle feeding and nasogastric feeding, which is also off the table because oral is not safe for her.  Option 3 is continuing just the nasogastric feeding, and Option 4 is a Gastrostomy feeding tube placed directly into her stomach on her belly.  We will know more soon.

What's all that mean for Lydia?

It all means that we need to feed her safely so she can grow out of the laryngomalacia and start to feed orally.  It also means we need to get this girl home!  

...and on a happy note, our baby girl is one month old tomorrow!

This may be a bit much...

No new updates on Lydia, so I'm bombarding you with pictures!  She continues to do well, we're just waiting on her breathing to slow down a bit.  That's proving to be a bit more difficult for her since she is still so small, 6 lbs 2 oz, and she has laryngomalacia.  It means her larynx is a little floppy and causes her to sound raspy or squeaky when she breathes.  85% of babies grow out of this and the other 15% need a minor surgical procedure.  She's doing well with the oral stimulation exercises the Occupational Therapist is doing with her, as well as her neck strengthening exercises.  Doing well means she's improving despite the angry faces and wailing while the OT sticks her finger and pacifiers in her mouth and cheeks.  I'd wail too!

       

Baby, You're a Firework!

Lydia had a terrific weekend and continues to impress her nurses.  She is now off of all IV medications and feeds, and her drainage tubes from surgery have been removed.  Lydia only has her feeding tube for breast milk and her nasal cannula for oxygen.  She is getting minimal oxygen assistance, but we're still working on weaning her off of the last bit.  Her pain medications are being delivered through her feeding tube, but she's only receiving them a few times a day.  It's so wonderful to be able to hold her with only 2 tubes instead of 10 to 12, and it's much easier to change a diaper!  The only hurdle we have left is feeding.  Lydia's Occupational Therapist visited yesterday and gave us some oral stimulation exercises to do with her 5 to 6 times a day.  Once she starts sucking we can move on to better things, like eating.  In the next few days Lydia may be moved out of the ICU to a regular hospital room on the Cardiac floor. 

What A Good Day!!!

What a day, what a glorious day!  We knew that once her chest was closed things would rapidly improve, but we were thinking day-by-day not hour-by-hour.  Here's what happened just today:

Ventilator tube is out.
Pacemaker wires are out.
Foley catheter is out.
Drainage tubes are now shorter and she can be moved with them.
All but one IV is out, it's delivering her TPN and lipids, her nutrients.
All IV meds stopped, getting them orally and just when needed.
Trophic feeds have been increased and will be again tomorrow.  

Yay! We have closure.

 

We received a phone call at 8:00am this morning letting us know that Dr. Patusko would close Lydia's chest at 9:00am.  Yes!  Thank you!  We were on our way.  We arrived at her bedside at 10:30am just as she was getting all settled again.  She was very sedated but doing well and had no complications.  All things are pretty status quo and that's exactly what they want to see, meaning her heart is handling it's tighter confines and still doing it's job.  Lydia is slowly being weaned off of sedation and woke up a little bit this evening.  That's her Sugar Bear on her head.  Every baby in the NICU and PICU gets one and the nurses use it to cover their eyes and help them sleep with all the lights and interference. 

If Lydia keeps up the good work and remains stable, a few things will happen over the next couple of days.  She'll continue to be weaned off sedation and pain meds.  She'll be slowly taken off all her heart medications.  Her ventilator assistance will be decreased slowly as she wakes up and eventually switched to a nasal cannula and then off entirely.  Once all ventilation is gone we can hold our sweet girl again!  The nurses tell us this could all take a couple of days or as long as a week.  We'll then be moved to the cardiac floor and work on normal baby things, like feeding!  Once normal baby things have been "mastered" by mom, dad and baby, Lydia can come home!