Trevor Christopher Berg – Truncus Arteriousus with Hypoplastic Arch and Ventricular Septal Defect (VSD)

This page is dedicated to all those who either have all or 1 or 2 of the above CHD’s.

Trevor Christopher was born on a Tuesday in May 2007 at 10:24pm via emergency c-section. Trevor was not tolerating labor and needed to arrive quickly. He weighed 6 pounds 2 ounces; 19 inches long.

Trevor was born with a rare heart defect known as Truncus Areteriosus with hypoplastic arch and Ventricular Septal Defect (VSD). (Atrial Septal Defect [ASD] was found during surgery and repaired)

It was discovered on his second day of life and things happened very fast from then on. They did a ECHO-cardiogram and EKG and then admitted him to the NICU at UCH, where he was born. He was then transfered to St. Joseph’s Children’s Hospital.

I was released from UCH the next day. Zate and I went straight to St. Joe’s to see Trevor. We stayed there everyday as many hours as we could tolerate, I did sleep at home since I was recovering from the c-section. Grandma and Grandpa Prier stayed with Nicholas and cared for his every need. This was a HUGE blessing.

Trevor is very strong and was very stable the whole time he was there. Thank you Jesus for that.

He will need life long surgeries as he grows and as the conduits wear out. His recovery time from his first surgery was to be about four weeks. He was in the PCICU (pediatric cardiac ICU) for his recovery.

Trevor did amazingly with his surgery, he was off the Ventilator in less than three days and we were sent home eleven days post surgery!!! Thank the Good Lord! Dr. Pettigrew coined the nickname Allstar for Trevor since he had been so strong and amazing everyone. That is where his team name came from.

4th Heart Catheter

24th January 2010
This week Trevor is going in for his fourth heart cateterization, this time a stint will be placed to keep his LPA open for proper flow to his lungs.

I can’t help but wonder why my little boy has to endure so much when he is so healthy, besides his heart of course. He is not a sickly kid he is stronger than most two year olds and he never stops! Its hard to accept that he needs all these procedures when on the outside he seems perfect.

I thank God for that but when it comes time to hand him over to be put under for multiple hours knowing that when he gets out he will be sick, agitated and very hard to console. Nothing makes me, a mom, feel more helpless.

26th January 2010
The cath is off because Trevor is sick, it seems viral at this point.

28th January 2010
Trevor is feeling better thank God. We have another date scheduled for the heart cateterization, February 4th.

31st January 2010
another week of hoping and praying Trevor stays healthy so he can go in for his heart cath for the stint. Although I really don’t want him to go in for this, I know he needs it and building up twice now to be let down due to illness is no fun either. I do not realize how much it takes out of me to mentally, emotional and literally plan for Trevor to undergo another procedure.

As I was jogging today my iPod was playing a random selection of Matthew West songs…not in order on my play list but God’s message to me. It was loud and clear! First was Something To Say, if you know this song maybe this line stands out to you too Your life is the song that you sing, and the whole wide world is listening, well the answer to the question is, you were created, your life is a gift and the lights are shining on you today. I quote these lyrics because until Trevor can speak for himself about his CHDs I am his voice and the world is listening to me. The next song was The Motions. This song is so powerful, it can have a meaning for any situation but for me and my journey If I “go through the motions” my child’s future could be in jeopardy. As a Heart Mom I have to stand up for Trevor and when I do I stand up for all Heart Kids. Third (in a row) and last song that played was Stop The World. Let me tell you how often I am thinking and praying stop all this senseless noise I need to hear from YOU! I need God to hold me and I so want to hear from Him.

Through this entire roller coaster I have always trusted God, leaned on him and needed him to carry me many times. A friend told me that God chose me…ME…to be Trevor’s Mommy and that He knew I could handle it. I had never really accepted that before, I am sure my family and friends have told me something to that effect since day one and I just never soaked it in. God does not make mistakes. He is in control and I know this.

Philippians 4:6 says Do not worry about anything, instead pray about everything. WOW is it really that simple? Yes! When we start to worry we need to immediately stop and pray about it. We cannot worry and pray at the same time ;o)

ICU

4th February 2010
Its was a rough start to the day… This has been the hardest age for him to go through this stuff yet. He understands fear and anticipation Sad

He is so bad at taking oral meds that he didn’t get even half of the versed dose he needed to sedate him for the IV so after 2 attempts and LOTS of tears, sweat and screams they just took the blood they needed to type match him in the event he needs blood during the procedure and were going to wait until after they gave him the gas to put him to sleep. Well I could hear him screaming and crying as I walked down the hall way. How scary must that have been for him to have a mask coming at and being held to your face crying.

As usual, even after zofran, reglan and emptying his stomach, he still threw up several times. Poor guy! I wish he tolerated the anesthesia better.

We got through the night, Trevor doesn’t seem to sleep much when we are here so he finally got into a deep sleep around 4am only to be woke up for a chest X-ray at 4:45! We are waiting for the ECHO and Lung Scan and hopefully we will go home today as planned.

Off to find some coffee…strong coffee!

16th February 2010
Trevor did well in the cath and now has a stent in his LPA – he has done amazing. He continues to jump those hurdles given to him.
Wrote by Sarah Berg
February 2010

Trevor’s website/blog www.trevorsallstars.com

To follow Trevor visit his Caring Page Trevor07 and sign up for email updates to read all of his progress.

Sarah Berg has given CHD-UK permission to use the photographs on this page.