Night Owl

Stella takes after her dad in many ways...but one of the biggest is how late she likes to stay up and sleep in. She also is the most active in the evenings - after 5 pm she babbles, plays, laughs, and wants to constantly be entertained. We keep telling her therapists that they should see how much she does in the evenings (she tends to shut down during therapy sessions or she is still too tired and not willing to try as many things). She even is willing to taste more at night- she loves to lick pieces of dark chocolate (don't tell her doctors!!) So it's no surprise to us that she is this happy even at 10:00 pm. We got a kick out of how much she was laughing and she is even learning to shake her head now, we hope you enjoy it as well!

1 in 100

This is what Congenital Heart Defect (CHD) looks like to me:

This week (Feb 7-Feb 14) is CHD Awareness Week. According to the Children's Heart Foundation, 1 in 100 babies are born with some type of CHD...this is about 40,000 babies a year. This year about 4,000 babies will not live to see their first birthday because of a Congenital Heart Defect. 

Stella is my 1 in 100 and there were many days that I prayed for just one more day. We are getting very close to celebrating her 1st birthday (a day that at many points I wasn't sure we would see) and I am so thankful to have the chance to celebrate this milestone with Stella when too many CHD babies do not get the chance. 

Before Stella was born I knew very little about CHD and the things that are now my reality. I did not know what an echocardiogram was or how to use a pulse oximeter, or read a hospital monitor. I had never seen a feeding pump and never imagined having to put in a feeding tube. I never made the choice to become a nurse or have any profession in the medical field, but now the CVICU at Phoenix Children's feels like a second home. My family, along with 1.8 million US families was affected by a Congenital Heart Defect and now my world is filled with doctors visits, echos, therapies, feeding tubes, beeping machines, medical terms and prescription meds. CHD is something that has taken over my world and is very important to me. I am a heart mother and the sleepless nights are worth it because the beautiful girl with the scar on her chest and the smile on her face has changed my world for the better.

I am a Heart Mother

by Stephanie Husted

One day my world came crashing down, 
I'll never be the same... 
They told me that my child was sick.. 
I thought, am I to blame? 
I don't think I can handle this...
I'm really not that strong.. 
It seemed my heart was breaking..
As, I'd loved her for so long. 
I will not give up on this child.. 
despite your best "advice".. 
I will give my child a chance.. 
No matter what the price.. 
And I will learn all that I need.. 
to help my child to thrive... 
I'll even use that feeding tube.. 
My child will survive! 
And she'll needs lots of therapy? 
And she just can't gain weight? 
Alright God I can do this.. 
I will not curse our fate. 
The feeding pump beeps,( at 3:00 a.m.) 
It serves as my reminder.. 
How many parents would welcome that sound? 
Tomorrow Lord, I will be kinder.
Another angel earns their wings.. 
and I run to my sleeping child's bed.. 
I watch her then, for quite awhile.. 
(I bend down and kiss her head) 
Then I cry for the parent's whose lives have been broken..
And I look to You wondering why? 
Oh Lord, I just can't know your ways.. 
No matter how I try. 
And yet, I trust You hold her life..
(and guide us through each day) 
My mind says savor each moment she's here...
But my heart whispers,"Please let her stay". 
From pacing the surgical waiting room... 
to sitting by her hospital bed... 
From wishing for a good nights sleep.. 
to learning every med..
From wondering will she be alright? 
to watching her reach out her hands.. 
with every smile, my heart just melts..
(despite life's harsh demands) 
For all who see that faded line.. 
I look to them and smile.. 
You see my child is loved so much..
I would face any trial... 
That same scar I trace with my finger.. 
(It's the door to her beautiful heart) 
You must have known how much I'd love her.. 
(Just as You loved her right from the start) 
A heart mom is always a heart mom.. 
(wise beyond all of her years) 
And for those who have angels in heaven.. 
Our hearts share in all of your tears.. 
On Mother's Day I will remember.. 
You chose me for her(and no other) 
And I will embrace that beautiful day.. 
When I became a "heart mother".

A Tooth at 10 Months

Stella is 10 months old today! And to help us celebrate she cut her first tooth 

(I couldn't feel it yesterday but her bottom left front tooth is definitely sticking out today!)

At 10 months old Stella is an active, happy girl. She sleeps thru the night most of the time but doesn't sleep much during the day...she is too busy having fun to sleep :)

Some of her current favorite things include:

This dog, Violet. 

Stella loves music and Violet sings to Stella and even has a couple songs about her. When we press Violet's paw and the song starts Stella gives us a big smile.

This colorful ball.

Or anything that she can hold with her little hands, Stella loves how easy she can get her fingers to hold this ball and she swings it all around once she gets a hold of it.

This NUK brush that was given to us by one of her speech therapists 

(although she doesn't always love speech therapy)

She currently loves putting anything that she can in her mouth as long as she is the one in control and this special sensory brush is one of her favorite things to rub on her gums.

We are still trying to get Stella to enjoy tummy time but she loves laying on her floor mat and she is getting very close to rolling over. Stella loves spending time with us and constantly wants us to cuddle with her, sit her up on our laps, or help her use her legs to stand tall.

It has been so great seeing Stella's feisty, fun, fearless personality form over the past 10 months and I am so thankful to be able to continue to see her develop.

A Happy Heart

Stella had a routine echo appointment today. Echos still freak me out mostly because at the "routine" echo in June I decided I could handle taking her by myself and we were admitted from the echo appointment to PCH. I am not sure if I will ever decide to go to an echo appointment without someone by my side (today my mom came with us and Stella really appreciated it because YaYa provides her with lots of entertainment!) Let me start this post out by saying that the end result of today was actually pretty good overall, but I wasn't so sure of this throughout the day.

Although her past few echos have looked pretty good and they have continued to trend in the right direction, I still find myself holding my breath while we're in the room and the technician is doing their job. Today I started out calm but quickly became a silent nervous wreck-we have been through enough echos to know the "normal" routine of a 20-40 minute ultrasound followed by transferring us to a room to wait and talk to our favorite Nurse Practitioner, Laura. Today after about 20 minutes the echo tech told us that he needed to show the doctors something and to stay put, he would be right back. However, as a nervous mom I heard SOMETHING'S WRONG. A few minutes later he came back in and said he needed to redo a section to get a better picture. Once he got his picture he once again left the room to show the doctor and left us waiting. When he returned he was accompanied by another echo technician and one of our cardiologists...now I am thinking SOMETHING IS REALLY WRONG! I was quickly told that I didn't need to freak out and they just wanted to try to get a good look at the right pulmonary veins that were baffled in her first surgery (the ones that they have had a hard time seeing the past 2 echos). With the cardiologists guidance they were able to see the veins and were pleasantly surprised that the blood flow looked better than they had expected and they did not see any turbulence or other signs of stenosis (I breathe a sigh of relief about now). 

So the summary of her echo today was that her gradiance was a little higher (it was previously a 4 but today it measured at a 7 but they aren't too concerned about this), they did not see any turbulence, and everything else stayed the same. They still want to keep a close watch on her right side so we have another echo in 6 weeks and at some point this year she will probably have a cardiac cath just to get an even better look.

Overall, Stella has a happy heart and she weighed in today at a healthy 16 lbs 10.4 ounces and was slightly over 28 inches long.