Sunday, February 7, 2016

<3

February 7th is here again, which means it is day 1 of Congenital Heart Defect Awareness Week.  I posted this
last year and this in 2014.
 

Our Evin Kate was born at 8:06pm on Wednesday, March 20th, 2013.  We had a perfect newborn baby.  The newborn nurse detected a slight murmur right after birth, but said it was not a huge concern and that they would keep an eye on it.  We spent Wednesday night, Thursday, and Thursday night cuddling and loving on our girl.  It did seem like she spent most of her time asleep, but that's what newborn babies did, right?  They like to sleep.  Her skin did seem to have darker coloring, but I was somewhat dark complected when I was a baby, so again, I didn't think much of it.  Everyone commented on her pretty pink lips.  But it never occurred to me that she might not be getting enough oxygen.  No one showed any concern that these signs could potentially mean that something was wrong.



We had NO IDEA that our baby was critically ill.  We had no idea that her little body wasn't getting enough oxygen.  We had no idea that she would have to have multiple life-saving surgeries.  We had no idea what the next few weeks would hold for Evin.

Congenital Heart Defects occur in 1 out of every 110 births.  That means a baby with a CHD is born every 15 minutes.  It just so happened that OUR baby was the one that was born during that 15 minutes.  I never dreamed it would happen to us, but it did.

Basic facts about CHDs:

-A Congenital Heart Defect is when part of the heart, or several parts of the heart, form abnormally during the early weeks of pregnancy.  

-CHDs are the leading cause of birth-defect related death.
 
-More children die each year from a CHD, than die from childhood cancer. 

-1/3 of children born with a CHD need a life-saving treatment before they are 1 year old. 

-Today more than 1 million American adults are living with a CHD.


The most important fact I can share, and the one I wish I had known about before Evin was born, is this:
-Heart defects can be detected (if they were not detected in utero) with a simple, painless, noninvasive test called a pulse oximetry test.  Many states are passing laws that require this test to be administered when the baby is 24 hours old.  Even still, don't assume that it is just going to be done; ask for one within the first 24 hours of your baby's life.  

I am FOREVER thankful for our nurse, Rachel, who noticed that Evin's coloring was "off" during her newborn tests that she gave early Friday morning, the day that we were scheduled to go home.  This prompted her to administer a pulse ox test, which lead to the discovery of her heart defect.  What if Rachel hadn't picked up on that?  Just a few hours later, we would have taken our critically ill newborn home, and didn't have a clue that she was sick.  I cringe at the thought of what could have been.  

The few days after Evin was diagnosed were a complete blur.  Mitch and I were hanging on by a thread as we watched Evin, hooked up to so many machines.  Machines that were keeping her alive.  She was sedated, had a breathing tube, and looked so tiny and fragile.  I was pumping religiously every three hours, praying, that one day soon, Evin would get to eat.



She had her first surgery at 6 days old.  Her heart was the size of a strawberry.  She had some very scary blood pressure issues immediately following surgery, but we were discharged from the PICU to the NICU after several days.  We stayed in the NICU until she was 24 days old.  We were lucky enough to get to come home for several months before her next surgery.  Some sweet babies and their families don't get that opportunity.  

 
 
 
 
For the next few months, eating proved to be the biggest obstacle for Evin.  The combination of breathing and sucking simultaneously made it feel like she was running a marathon every time she ate.  In an effort to get her to gain weight, she was on an every 3 hours eating schedule.  It was more work for her to breastfeed than to bottle feed, so I pumped exclusively.  We fortified breastmilk with a little bit of formula to boost up her caloric intake.  It took her an hour to take a bottle, and she was eating every three hours.   So basically, she was eating constantly.  I also pumped for 30 minutes, every three hours.  Between the bottles and pumping, it seemed like there was about 1 hour in between each feeding/pumping session.  For 5 months, our lives and schedules revolved around Evin eating.  We worked so hard to get her to gain weight so she would be strong for her second surgery.  She went in for her repair surgery at 5 1/2 months old, weighing in at 13 pounds.  
 
 
She did great during surgery and had few complications during recovery. 
 
 
 
 
 
 
We took her home from the hospital following her second surgery after just 1 week at Cook Children's.  This homecoming was almost as sweet as the first.
 
 

Now, our Heart Hero, our Heart Warrior, Evin Kate is almost 3.  She surprises us every day with the funny things she says and does.  We can't imagine our lives without her sweet and sassy personality.


 
I am so thankful that God chose us to be her Mommy and Daddy.  I am thankful that we get to experience so many incredible days with our baby.  She visits the cardiologist once a year for a full heart check up, and is doing very well so far.  
 
 
Evin's heart is "repaired" but she will have to have a valve replacement surgery in the future.  Hopefully the surgery is 10-15 years out, but we will have to keep an eye on her heart to see when the surgery will be necessary.  I do see signs of her mended heart from time to time.  Her lips, fingers and toes will turn purple when she gets cold.  She seems to get out of breath quickly when running and playing.  She gets sick easily, and when she does get sick, it seems to take her forever to get well.  I certainly try to be positive and thankful for Evin's health, because things could have turned out so much differently than they did. 

My favorite Bible verse hangs in her room and will forever be written on my heart.
Everytime I think of you, I give thanks to my God.
Philippians 1:3


Congenital Heart Disease is severely underfunded relative to the prevalence of the disease.  
Make a difference by donating to support the cause.
(here) or (here

http://www.mendedlittleheartsofphx.org/uploads/2/4/1/4/24146503/1312236_orig.jpeg
 
Wear red this week to support little heart warriors everywhere!

Sunday, October 18, 2015

August

In August I was soaking up the last few weeks of summer with my girl.

The more visits we made to Hawaiian Falls, the more she loved it.

This tiny Elsa still loves to belt it out to Let It Go.  I can't handle her animation...cracks me up!
video

Her first big girl gown.  I was hesitant to put them on her for fear that she would get cold.  She never woke up while wearing it, so she must have been fine.  After this night she would ask to wear her gown to be. :)

Cute (and difficult to photograph!) cousins.

She loves to help her Daddy water the grass.


My two favorites!

Evin loved her pink sandals so much, I bought her some clear sparkly sandals that were very similar.  When they came in the mail, we immediately put them on and she admired them the rest of the day.

We finally convinced her that sprinkler running is fun!

Evin was excited to check the mailbox to discover that Lane had left a piece of mail in there for her.

Potty training boot camp took place in August.  We stayed home for three days straight and Evin either went bare-bottomed or wore panties.  Were we went, the potty went, too.

I tried various rewards for our potty training attempts, since she didn't really seem to care about the M&M rewards from the first time we tried.  We tried a sticker chart for awhile, but it didn't give the instant reward that she needed.  We ended up giving either Skittles or small Starburst bites for potty rewards and she got to choose from a "treasure box" of little toys when she pooped in the potty.
This was the first treasure box prize she selected and this face cracks.me.up.

She was so proud.

We braided her pony's mane and tail, and she decided that she had to have a braid, too.  This was the beginning of her hair braid love, and she wants me to fix it this way often.  Too bad her hair is so fine, because it won't hold a braid for very long!


She loves him, and he loves her when she lets him lay on her blanket.

Another Hawaiian Falls day!  E said, "Too bright!"

I was feeling brave and took Evin to school with me to get some things done in my classroom.  I have a little kitchen set in my room, so it provided some entertainment, but her favorite thing was dumping math manipulatives out all over the floor.  I gave up on accomplishing anything pretty quickly, and we left.

Evin wound up sick (again), which meant she was in bed with us for a couple of nights.

One of my favorite parts of August- taking Evin to the circus!


Big truck, little girl

Her first trip to the circus meant picking out a souvenir.  She chose a white tiger with a pink blanket and (with help), she named it Bailey (after Barnum & Bailey).

Her favorite part?  The elephants!  Lions/tigers were a close second.

We had a lot of fun and also made a lot of trips down the stairs to the bathroom.  Probably like 10 trips.  And she never once went to the bathroom.

We stopped by Petco to check out the animals.  She loves this black bunny!

I love ALL of these faces.

We woke up early one Saturday and headed to my mom's house to see the Mansfield High School band march through the neighborhood.  They do this every year to raise money through donations.  I forgot to snap a picture of her watching, but Evin loved it and wanted to see more after they were gone.  We settled on donuts followed by watering Mums' flowers instead.


One of her favs is playing in the bed of Daddy's truck.
...awkward smile....

...cheesy smile!


Evin loved having Miss Rae as her Little Gym teacher this spring/summer.  We have to switch classes because I am starting back to work, and Miss Rae will no longer be Evin's teacher.  We are so sad!

I started school towards the end of the month.  Lots of hours went into lesson planning, setting up my classroom, and decorating.  I worked hard on the bulletin board outside of my room! Each kid had their own hot air balloon with their name on it. :)

She LOVES to hang from the high bar.

Silly, silly girl.  
She still loves her crib.  We have yet to transition her to a big girl bed because she has never tried to climb out of her crib and she is a great sleeper, so we haven't rocked the boat!

Evin helped Pa blow out the candles for his birthday.  She loves Pa and running in to see him and grab a jellybean from him when she arrives at their house.


Evin and Mums go to the library about once a week to pick out new books.  I usually get a text message with a picture in this very same spot each time they visit.

We ventured over to Dallas one Saturday to visit the Coots, have lunch, and shop a little. All three kiddos were wearing coral and all three got a Ring Pop treat.  Yum!

One of Evin's favorite things to do is load up her little grocery cart with toys and push it around.  She added in a crossbody bag and a teddy bear for this shopping trip. ;)

 And later that day for a real shopping trip to Target, she scored a cake pop (complete with chocolately hand and a white shirt).  Eek!

She's not a baby anymore!

Helping around the house while holding Ashby (who is about to lose her pants!) and wearing her purse.  Such a little mommy!