Birthday Countdown

 Birthday Photo Shoot with Aunt Amber

I can't believe this cute girl will be a ONE-YEAR-OLD in a week!!! She has had an eventful year with 4 hospitalizations. Her most recent hospital stay was very different for us because we weren't on the 5th floor (the CVICU) where we feel at home. This time we were on the 8th floor, the neurology/seizure unit where Stella had an MRI and a 24 hour eeg. We discovered that she was having infantile spasms, a type of seizure that can be very damaging to an infant's brain. Thankfully we brought Stella into the ER instead of waiting for our neuro appointment to figure out what was happening - our neurologist told us that she has seen families who wait a few weeks and their baby comes in for an appointment with no personality and just a blank stare due to the brain damage they have suffered from the spasms. Well little miss Stella has definitely not lost any of her personality! We left the hospital with two new medications, keppra and prednisolone (a steroid). The neurologist warned us that the steroids could make Stella very hyper, hungry, and ANGRY. The "roid rage" has hit our household but it only stays for a short time each day. Stella is very hyper and since we have come home from the hospital she takes a very short nap each day and doesn't sleep through the night. However, she has also been very playful and talkative (we think she is saying "Da Da," "Ma Ma," and "YaYa") The angry baby shows up usually in the afternoons/evenings for thirty minute screaming sessions where it seems like she is overly tired but completely fighting wanting to sleep. The steroids are a temporary thing, thank goodness!, that should be gone in about 30 days - they are definitely working though. Stella's last seizure episode was on Sunday morning and Stella has gone over 48 hours without throwing up! A vomit-free Stella is a huge deal to us because she has never had a full day go by without throwing up and it had gotten so bad that somedays she would throw up or gag 12 times. I am not sure it the vomiting was directly related to the seizures but it has definitely gotten so much better with the seizures going away.

We have a lot to celebrate this next week and it is so great to see how many milestones Stella has reached over the past year (the big ones like surviving two open heart surgeries and the little ones like making it through an entire day without throwing up!)

So Many Doctors, So Little Time

Stella has been a busy girl lately! She has Speech Therapy on Mondays, Occupational Therapy on Tuesdays, Physical Therapy on Wednesdays and usually at least one other doctor appointment at some point in the week.  The past couple of weeks I have realized how blessed we are to have some pretty amazing doctors (and how frustrating it is when a doctor doesn't meet our expectations.)

Recently Arizona Business Magazine released their Health Care Leadership Awards and Stella was lucky enough to have two doctors mentioned! Her main cardiologist, Dr Stephen Pophal won the award for the best physician (see the article here) and Stella's heart surgeon, Dr John Nigro was a finalist for the best surgeon. Although my opinion is a little partial, I think Dr Nigro definitely deserved to be the winner-he did save my baby girl's life TWICE after all!

Today we had a cardiologist/echocardiogram appointment. The results of the echo were good, nothing has changed in 6 weeks. We are so grateful to have Stella's cardiology team, from her award winning cardiologist to our amazing Nurse Practitioner, Laura, who is always willing to answer any questions and make sure that Stella is getting the best care in every area. We brought up some concerns we have about Stella's neurological activity, GI issues, and eye issues and Laura gave us better answers and guidance than the specialties in each of these fields has done. I seriously don't know how I would have the confidence I need to take care of Stella without the help of Laura and the team that Dr Pophal has provided us with. 

Neurologically Stella has made a lot of advances that have really amazed us. She is a happy girl full of personality. However, a couple weeks ago, Stella started a behavior that concerned us and the soonest we could get in to see our neurologist was April 3rd. About 5 times a day (and usually once in the middle of the night) Stella makes a few involuntary jerking movements with her arms that we think might be a sign of seizure activity. We have video taped her doing this a few times to show to our doctors but today Stella decided to show Laura herself. Laura was also concerned by this and is making an effort to contact our neurologist to do what she can to get us in sooner so we're not waiting a few weeks to get this checked out!

I think that having a doctor as helpful as Laura has really set the bar high for the other doctors we see because I expect all of them to give us that level of care. Unfortunately, it's not very common, especially with our GI doctor. We have not made a lot of progress in figuring out why Stella vomits so much and finding a way to help her. The last GI appointment we had two weeks ago our doctor recommended changing her feeding schedule to a faster rate and coming back in two months to see how she was doing - what am I supposed to do for two months with a barfy baby?! So Dr. Mom took matters into her own hands and created an even better feeding schedule that works best for Stella and for us and I'm looking into finding another GI who might be willing to look outside the box for some answers. The good news is that now Stella does not get continuous feeds throughout the night, her last feed stops at 10:15 pm and her morning feed doesn't start until 9:00 am - which means NO MORE WAKING UP EVERY MORNING AT 2:00 AM to add more feed and NO MORE FEEDING PUMP MAKING NOISE ALL NIGHT LONG. This has been a huge relief leading to a few nights of uninterrupted sleep for all.

We are also seeing an ENT (ear, nose and throat) doctor on Monday to see if he can give us any insight into her gagging. We're hoping they can do an upper airway/esophagus scope to see if there is any inflammation or anything that would cause her irritation and make her gag. 

A few weeks ago we also saw a pediatric ophthalmologist (eye doctor) thinking that her right eye was weaker due to her brain damage. We went into the appointment thinking Stella would get a patch for her left eye to wear throughout the day to make her right eye stronger. The doctor we saw thought that Stella had a congenital eye defect that was completely separate from her brain damage and that she needed surgery. The idea of another surgery isn't the most pleasant for us and the doctor only operates at Cardon Children's Medical Center- which is a great hospital but is not where Stella's medical team is, which makes us uncomfortable with the procedure. At first the news of a congenital eye defect sounded great because we finally had something that was not due to her neurological damage and otherwise her eyes were "normal." However, after thinking about this for awhile we have decided that we need to get a second opinion (hopefully from a developmental eye specialist) because the weaker eye due to her condition makes a lot more sense.

Stella is a trooper through all of the different visits and as long as I play her favorite YouTube video "Twinkle, Twinkle Little Star" by the Gigglebellies she is usually smiling the whole way through. Stella has come a long way since she was admitted at Phoenix Children's Hospital in June and we are going to continue to do everything we can to make sure she has every opportunity to continue in her progress. Thank you for being a part of our journey, because even with award-winning physicians, we would not have gotten through this past year without the support of our family and friends who love Stella (almost) as much as we do :)

11 Months!

Our sweet girl is 11 months old today!

This past month has been a month of exploration for Stella. She has discovered how to blow raspberries and loves making new noises with her mouth. She has tasted bananas and seems to like them (to help her overcome her oral aversion we let her hold, smell and taste many foods but most of the time it is only a "touch and go" to her mouth. When we put baby food bananas on her tray it was the first food that she really tasted and swallowed.) She loves to shake her head "no." Stella enjoys playing "peek-a-boo" where we hide her face and she reveals herself to us. Stella has discovered our dog, Mia, recently and she loves to give open mouth kisses and touch her fur. 

Today during physical therapy, Stella rolled by herself from her stomach to her back for the first time (and even though it was out of her frustration from being on her stomach for tummy time it's a big milestone!)

Stella has come so far since we left Phoenix Children's Hospital and she is already doing things that at one point we weren't sure if she would ever be able to accomplish. It is exciting to see the progress she is making and it is very evident that she is a determined, stubborn little girl who is not going to let many things hold her back. I am so proud to be her mom and I look forward to watching her accomplish so much more.

I can't believe that we are now only one month away from her 1st birthday, but we can't wait to celebrate our special girl on her special day with so many people who have helped us get where we are today.

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.