How a Broken Heart Made us Whole: August 2012

Monday, August 13, 2012

A Day to Remember...

A year ago today (Aug 13, 2011) we were finally able to bring Stella home from her second open heart surgery. After two months of living at Phoenix Children's Hospital and the Ronald McDonald House we came home to sleep in our own beds (Stella in her pack & play in our room).

We spent countless hours on the 5th floor in the CVICU at PCH in room 5108 and many days it felt like we would never make it back to our house. We had a <fairly> easy experience with her first surgery, everything was the best case scenario and we were only in the hospital for 2 weeks. We were given a 98% success rate going into her first surgery...for her 2nd surgery we only had a 1% success rate. There were many times when we didn't think that bringing Stella back home would even be an option but a year ago today we had the miracle of coming home as a family.

It wasn't an easy homecoming, but it was definitely a joyous one! We didn't arrive home with just a baby; we also had a feeding pump (running 20 hours a day), a pulse oximeter, oxygen, and an extensive medication list that required us to deliver meds to Stella every 2 hours.

We knew that we had a long road ahead of us but every moment was a blessing...we were losing sleep because we had to deliver medication, stop an alarming pulse ox, or add food to a pump, not because we had lost our baby girl. A year really does make a BIG DIFFERENCE. None of the doctors or surgeons that discharged us from PCH expected Stella to be where she is at today. She has continued to be a strong fighter and has overcome so many odds with a smile on her face.

Stella's Aunt Lesley made these heart shirts for all of the cousins to wear while Stella was in the hospital. Stella finally fits in her heart shirt and it is one of my favorite shirts for her to wear...in July 2011 as we took a picture of Stella in her hospital bed with the shirt covering her open chest post-surgery, I could not even imagine the happy pictures we would have the chance of capturing in July and August 2012 as Stella wears her heart shirt proudly.

Aug 13 will always be a day to remember...a glorious day where Stella proved the doctors wrong and showed the world God's grace by coming home with her mom and day instead of going home to God.

Thursday, August 9, 2012

A Curvy Spine, a Happy Chair, and a NORMAL Heart

Today was a busy and great day for miss Stella Bella.

We started with an orthopedic appointment at Phoenix Children's Hospital with Dr Segal. This was our first time going to an orthopedic doctor and we were referred to see one by Stella's physical therapist. He took an xray and it showed that her spine is curved 22 degrees (so she has mild scoliosis) but her spine is still very flexible. It is great that her spine is still flexible because if the curvature is caused by her right side being weaker then it is possible that as her right side gets stronger it will correct itself.

We then went to the Adapt Shop to pick up Stella's happy chair. We have been patiently waiting for the floor sitter to be completed so Stella could learn to sit up correctly. But when we sat her in the chair at the office it was a <not so> happy chair. She was overly tired from the busy day and unfamiliar with where she was so we couldn't test it out at the shop; we had to just take it home.

Then we went to the cardiologist at the PCH east valley clinic by Mercy Gilbert for a routine echo and follow-up. It was a little bittersweet because this was our first appointment without our favorite NP, Laura, who has been with us since the beginning...but since we are no longer able to see Laura we are now able to go to the office that is closer to home. We started with her measurements and her blood pressure and saturations were normal. She is in the 50th percentile for height at 31.5 inches and the 5th percentile for weight at 19 lbs 10 oz. Then we went to her echo and Dr Puntel came with us to read the echo as it was happening...everything looked great! Her gradiance in both the left and right pulmonary veins was stable and slightly better from the last time. Dr Puntel said that her pressures were "normal!" This is the first time anything about Stella's heart has been described as "normal!" What a relief to hear those words! We are now able to wean Stella off of the diuretic she has been on and we will go back for another echo on September 20th.

When we got home we decided to try to use Stella's happy chair again and she loved it!

The happy chair is made out of a very soft foam that is lightweight yet durable. It is custom-made for each child to provide the right amount of support and to help them sit correctly.

Stella's chair has a table that can slide over it so she can experience what it is like to play with her toys while sitting.

Stella really enjoyed sitting in her happy chair once we were home and in an environment that she recognized. We will use it daily and Gayle, the physical therapist who helped to create it, said that after 3 weeks she usually sees significant improvement.

Finally Stella is a HAPPY GIRL in a HAPPY CHAIR!

Thursday, August 2, 2012

Back to Reality after a MONTH in Paradise

We are home from our Coronado vacation and have quickly gotten back into a busy schedule. It was so nice to have 30 days to relax with family. This past year has been pretty hectic and the time that we haven't been in the hospital we've been working (David and I were doing opposite schedules to be home for Stella so we didn't have much down time). It was such a blessing to have the ability to both be in Coronado from July 1st-July 30th.

Stella did so well by the beach..we joked about trying to get a prescription to move to Coronado <I definitely think it's "medically necessary" for Stella to be by the beach considering how much better she was doing there!> While we were in Coronado, Stella vomited a lot less (on average only once a day and we had MANY vomit-free days), she drank a lot of water thru a straw (up to 3 ounces), she ate and tasted many new things, and her mobility improved significantly.
We had a fun-filled vacation with trips to Sea World, the beach, the pool, Old Town San Diego, Point Loma, Scripps Aquarium in La Jolla, and a lot of relaxing on the island. You can check out some of our favorite memories at the end of this post!

We drove back on Monday and got right back to "work" on Tuesday. Stella had Occupational Therapy on Tue morning, Physical Therapy on Wednesday and Speech today. All of her therapists were very impressed with the progress she was making, especially her speech therapist when she saw her drinking water from a cup and thru a straw. I started working again on Tuesday morning at my new Starbucks store and David goes back to work on Friday night. We are also in the process of moving in with my parents - we hope to be fully moved out of our house before Aug 20 when David starts full-time classes.

The next two weeks are going to be extremely busy with therapies, working and trying to move AND we have some very important doctors appointments coming up.
On Thursday Aug 9 we have a Cardiologist appointment with an echo and an appt with an Orthopedic doctor. We hope that Stella's heart has continued to be stable and improve since her last echo in June. The orthopedic appointment is to check on Stella's spine (because her left side is stronger she mostly uses the muscles on the left-side of her back but this has caused her to sit the left side sticking out more and we want to make sure that her spine has not been affected by this)
On Monday Aug 13 we have follow-up appointments with the Neurologist and the GI doctor. Stella has not had any signs of seizure activity since we have weaned her off the steroids, which is great, but she is still susceptible to having seizures. We also need to talk with the neurologist about what effect her cerebral palsy is having on her development. We haven't seen the GI doctor since Stella had her scope and her vomiting has improved but we need to make sure that she is gaining enough weight and getting enough nutrition.
On Tuesday Aug 14 we have our consult with Marsha Dunn Klein in Tucson to help us figure out how to do a blended diet through the gtube and how to work towards getting Stella to eat more by mouth and get rid of the tube completely.

I'm so thankful that we had July to relax and enjoy great weather because we are back to the Arizona heat and our crazy, hectic routine. Here are some of the memories we will be holding onto until our next vacation!