Just Chillin'

Miss Lydia is still just chilin', sleeping her days away.  I thought her little face was less swollen yesterday, but today it really is - she's back!  She is doing really well and continues to improve.  She is now off of 2 out of 3 heart medications and off the pacemaker.  She's still receiving her TPN fluids and Lipids, but she's now up to 6 mL of breast milk per hour.  To put this in perspective, before surgery she only got 6 mL every 3 hours.  We continue to wait for Dr. to say it's time to close her chest.  Hoping and praying that happens tomorrow.  

Awesome day for Lydia!

Lydia amazes us each and every day!  

We found out this morning that her chest would not be closed this afternoon.  At first I faltered and was disappointed, but then was told it wasn't because of her.  Lydia was ready for it!  Her surgeon had an emergency surgery come up this afternoon, so we're waiting for tomorrow, hopefully tomorrow.  

Lydia looked more like herself today because her swelling is down all over her body.  She was able to come off of her calcium and one of the three heart medications.  Lydia is getting her TPN fluids and Lipids, as well as more trophic feeds of breast milk.  She continues to breath on her own when she is awake, which is a good sign for how she will do off of ventilation.  

The best news of the day is that Lydia's heart is no longer relying on the pacemaker to keep a regular rhythm.  I've been waiting for this!  No matter how many times the doctors and nurses tell me it's normal for her to have the pacemaker, I don't like it.  My girl is doing it on her own now!

The nurse last night washed her hair and dolled her all up.  That bow!  The nurses keep putting it on and I keep taking it off.  I think it's a little much, but the bow is the least of my worries.  You can't see it in the picture, but her feeding tube sticker on her cheek is a colorful little elephant.  I truly appreciate all they do, including the cute stickers and bows!             

A Little Interior Decorating

Who says the PICU can't be homey?  Lydia is getting a lot of love and room decor help from friends, family and nurses.  So far we have several signs and stuffed animals watching over her.

Thank you Nurse Megan and Nurse Stephanie for the name banner!

Thank you Nene for the lil' slugger baseball welcome sign!

Mama Krupich added the Let Her Sleep sign to her bedside!

Mama & Papa, Nana & Papa and Aunt Gigi added her stuffed animal assortment!

Good Days for Lydia

Lydia has had two peaceful days after her surgery.  She's still very sedated and sleeps nearly all the time.  All her numbers, assessments, labs, etc. look good and she hasn't had any issues.  She remains on many drugs for various things, plus a ventilator and a pacemaker, all normal things for her to have after surgery.  The plan is for her to remain in this steady, stable condition and not show much progress yet.  The number one goal right now is to flush the fluids out of her body since she is pretty swollen.  

Swelling is typical after a surgery.  Due to the swelling and her small size, her surgeon decided to leave her chest open after the operation.   This is very normal for heart surgery patients of her size.  He's planning to close on Monday, so that's our next big step.  Just anxiously waiting for Monday because she won't have any real progress until her chest is closed.

I am so thankful we spent the night at the hospital the day before her surgery so that we could hold her many times for many hours.  The hardest part of these past couple of days is not being able to hold her.  On Thursday her little hands were just limp and you felt like she didn't know you were there.  Dan text me on Friday morning and said, "She squeezed my finger!"  I could not wait to get there to feel that.  Today she opened her eyes just a bit.  So for now we're surviving on finger squeezes and squinty eye peek-a-boos.  

Miss Lydia will be two weeks old tomorrow.  Two weeks down, and hopefully only 3 or 4 more in the hospital.   

"Let her sleep..."

"Let her sleep, for when she wakes she will move mountains."  ~Napoleon Bonaparte

Yeah, Napoleon was talking about China...I still like the quote in reference to Lydia.

Our day began around 5:00am so we made sure we had plenty of time to spend with Lydia.  We snuggled, we sang, we cried, we took pictures, we enjoyed our babe.  Lydia went to surgery around 8:30am.  We had several updates throughout the day to inform us on how her procedure was progressing.  Each time it was good news.  Around 2:45pm Dr. Pastuszko came to tell us Lydia was in recovery and doing well.  He was able to fix the IAA, VSD and ASD.  We are so thankful this was completed in one surgery.  Around 4:00pm Dan and I were able to see Lydia.  

She definitely isn't the little precious we left this morning, but she's on her way back to being that person.  She's heavily sedated and on pain medications to keep her comfortable for the next few days.  There are double the monitors, double the medicines, double the IVs, but it all means she is on the road to recovery and home.  Day by day things will change and she will improve.  Slowly the wires, tubes and IVs will decrease and we'll be able to hold her again.  Before we know it, we'll be home!

I know that there are dozens of people thinking of us and praying for our family each and every day.  Today that was especially true.  Thank you to all of you for your prayers along the way.  Thank you for adding our names to prayer lists, for dedicating Mass in Lydia's, and for asking for prayers from your family and friends.  The toughest day is over and now we will all help her recover with more healing thoughts and prayers.  

"Oh, I believe there are Angels Among Us, 
Sent down to us from somewhere up above. 
They come to you and me in our darkest hours 
To show us how to live 
To teach us how to give 
To guide us with a light of love."
~Alabama 

Pre-Op Family Time

It's Time to Mend Her Broken Heart

Lydia's surgery is scheduled for tomorrow, Thursday, June 25, 2015.  Dan and I are fortunate enough to have a Ronald McDonald Room at the hospital tonight so we can cuddle her as long as we want and see her off to surgery in the morning.  

The team will take her to the operating room around 8:00am and we probably won't see her again until after 5:00pm.  She'll have an hour or so of pre-op, a 3-4 hour surgery, and then a couple hours of post-op.  We'll get regular updates from the nurses and then meet with the surgeon when it's finished.  And then, finally, we'll get to see our baby girl with her mended heart.  

We've met the cardiac nurses, the surgeon and the anesthesiologist and have been impressed with them all.  Lydia will be in the hands of some of the finest people in the field tomorrow.  We can't begin to know what tomorrow will be like for us, but knowing she is with the experts will help us remain as calm as possible.  

Thank you all for your care and concern regarding Lydia and her surgery.  I'll update the blog as soon as I can to let you know how she is doing.

           

Sunday's Child

Happy First Father's Day, Daddy!

Lydia is one week old today, Sunday, June 21st.

A good friend of mine shared something with me about being born on a Sunday.  In her Czech culture, it is the highest blessing to have a baby on Sunday.  Sunday babies are called "nedelnatko" and they are believed to be the happiest, luckiest and most blessed of all.  She was also born on a Sunday and is a wonderfully sunny and dear person. 

My mother also shared something about being born on a Sunday.  Sunday's child will never be satisfied with anything dull or ordinary in their lives and they will always be like a ray of sunshine with their aura of lightness and brightness.  Lydia already qualifies as extraordinary and is definitely our sunshine!

    

Picture Time

No big updates lately because Lydia is doing great!  She's very stable and resting well, preparing for her upcoming surgery.  She's getting the max amount of fluids and breast milk.  Yes, she's getting breast milk through a feeding tube in her nose.  She's down to only one pulse oximeter, which when you have lots of IVs and monitors, one less wire is appreciated.  Lydia started out having her blood drawn and labs checked every 4 hours and now she's being checked once a day.  All good things!  

Lydia absolutely loves being swaddled and absolutely hates it when you mess with the swaddle.  Every time the nurses need to assess her, change a diaper, check a monitor, re-position her, whatever it is, look out!  It's just her upper body that's swaddled because from her belly button down she has a lot of important things going on and they don't want her playing with the wires.  Sometimes I sneak a hand out and she loves to rest it on her cheek or fist it under her chin or cheek.  Precious!

My favorite picture of cozy Lydia and her snuggle bear.

Lydia and Daddy having a little chat.

She looks a little freaked out about the new tube in her nose, but it's a good thing.
Lydia is now receiving a tiny bit of breast milk.

BIG YAWN!!!

Snuggle time with Mommy.

All that hair - just wait for the hair bows lil' lady.

The Best Thing Ever

Dan and I have both experienced the best feeling ever, holding our baby girl and rocking her to sleep.  I was able to hold her for about 5 minutes when she was born, then again on Tuesday.  Dan held her last night.  So warm and cuddly and peaceful.  Happiest moments of the week!

3 Day Old Rockstar!

This kiddo is such a trooper!  When we arrived at her bedside this morning she had wires, cords and tubes everywhere.  When we came back after lunch all the electrodes on her tiny head were removed and her breathing tube was out.  No seizures!  No apnea!  Other than her IV lines, heart monitors, and little pads to measure blood flow to her upper and lower body, she's just a bundled up baby.  In other news, I was discharged today, so Dan and I packed up after 6 days at the hospital and headed home this afternoon.  It's good to be able to relax at home, but hard not having Lydia with us.  Such a successful day for our little girl!

     

This Is Her Normal

Two things we believe and tell ourselves every time we are faced with a new twist or turn:

1. Lydia knows nothing else but life like this.  This is her normal.

2. Lydia will not remember any part of this experience.

Day one for Lydia was a tough one.  She had two episodes of apnea Sunday morning which led to her being intubated in case it were to happen again.  Thankfully, it has not happened again in over 36 hours.  The doctors are also monitoring her brain activity to ensure this is not seizure related.  Again, nothing out of the ordinary has been found.  She also spent the day  getting hooked up to lots of monitors, electrodes and IVs and having a echocardiogram.

Day two was a bit more relaxed and restful for Lydia, Mom and Dad.  She had a CT scan first thing this morning and a PICC line inserted early this afternoon.  The rest of the day was pretty uneventful.  It's much nicer to see her resting ... and opening her eyes!  We had yet to get a good look at those pretty blue eyes.  

79 hours and 49 minutes later...

Miss Lydia was definitely in no hurry to see the world and meet Mom and Dad.  After many attempts to induce labor and achieve progress, we finally turned a corner on Saturday morning.  Things were progressing, I got an epidural, slept through most of the night and at 3:00am it was go time.  Lydia arrived at 3:49am.  Night Owl or Early Bird?  Only time will tell.  She weighs 5 lbs 15 oz and is 20.25 inches long.  She has a head full of brown hair that might be kind of curly.  Lydia has the sweetest little feet and long fingers.  Piano Player?     

The doctors are checking her over very closely and running all sorts of tests so that they are very prepared for her needs.  We'll know more Tuesday when the team of cardiologists meet to discuss her heart defect.  In the meantime, we're just enjoying our baby girl! 

38 Hours Later

We checked into hotel Children's Mercy at 8:00pm Wednesday, June 10.  Nice room with a view and the world's most uncomfortable birthing bed.  The doctor on call was kind enough to let me have soft foods on Thursday morning since I hadn't eaten since noon the day before.  I ordered chicken noodle soup, mashed potatoes and gravy, and applesauce.  Yummo!  Induction really begun around noon on Thursday, June 11.  In the evening I had chicken broth, an orange jello cup and cherry popsicles.  Luckily, I have a thing for orange jello and popsicles.  The chicken broth tastes like the seasoning packet in Ramen noodles.  It's divine, I'm serious.  I love that stuff.  Dan now expects us to save money for Lydia's college fund by my going on a Ramen Noodle diet.      

I've been on Pitocin, very slowly upping the dose, since noon on June 11.  We could go faster, but then we run the risk of stressing out Miss Lydia or me.  Since Lydia will have after birth complications, we're taking things extremely slowly to keep everyone safe.  It's a long, slow, boring process, but we're passing the time.  I've almost finished one book, I'm playing a lot of solitaire, and we're watching substantial amounts of TV.  Oh how I wish the Royals v. Cardinals series would start today.  

That's about all we have to report.  Here's hoping for more jello and popsicles!

A Bump in the Road

A couple months ago I had a routine ultrasound and Lydia measured a bit small, consistent measurements, but only in the 6th percentile.  I was referred to a specialist and they measured her in the 16th percentile.  On the right track!  My doctor and the specialist agreed that due to my height and size, she may just be a small baby or she may come a week or so later than anticipated.  I had a follow up with the specialist scheduled just to check for growth consistency from month to month.  At that visit on April 8, I saw a different doctor who said that size-wise we were okay and she was now in the 17th percentile.  He also found a potential problem with her heart.  He thought that the aortic valve was measuring smaller than the pulmonary valve.  He referred us to the Fetal Health Center at Children’s Mercy.  On Friday, April 10 we went to have a Fetal Echo and consultation with a Cardiologist.

Lydia has an interrupted aortic arch and a ventricular septal defect.  That basically means her aortic arch is small and doesn't connect in the right places, meaning it will need to be reconstructed and the two sides attached, and she has a hole between the left and right ventricles that needs to be patched.  I will deliver in the Fetal Health Center at Children’s Mercy Hospital, where Lydia will be staying for a while.  Best case scenario is that she has to have 1 surgery and they fix it all at once.  Hopefully the worst case scenario is that she has to have 2 surgeries and fix one thing then the other.  Depending on when this can happen, due to her size and strength, she could be in the hospital for 4 to 8 weeks.  We have the best resources imaginable at Children’s Mercy and this was caught before she was born, so we will be prepared and ready to take care of her.  Once she’s had her operations and is all healed, there is no reason she won't lead a normal, healthy and active life.

The other thing going on is that I have too much amniotic fluid, almost double what it should be.  This could lead to pre-term labor.  Since Lydia is small and has a heart difference the doctors want her to make it to 39 weeks.  My doctor suggests I sit as much as possible and prop my feet up.  So, a lot of couch time for me, move over Dan!  The doctor has decided to induce labor on June 11, if I don't start labor naturally before then.  So, here's hoping for June 11 so this little girl can keep packing on the pounds.  I've made it this far, June 8, so let's count down a few more days!

October 14, 2014

It was turning out to be a fabulous fall in Kansas City.  Mom and I took a week long trip across the state of South Dakota, Dan and I cheered the Royals to many post season victories, we visited the Renaissance Festival with great friends, and our 3 year Wedding Anniversary was approaching.  

Oh yeah, and we found out we were expecting!  

We found out the exciting news on October 14, 2014.
We visited the doctor for the first time on December 3, 2014. 
We told our family and closest friends on December 24 & 25, 2014.
We told everyone via social media on January 1, 2015.