Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Monday, February 11, 2013

Day 11: Meet Juliana and Silas

Today I bring you the stories of Juliana and Silas.  Juliana and her family are very special to us.  Juliana even attended Xavier's first birthday party..I consider her and her mama dear friends!!!  I just had the privilege of meeting sweet Silas...his family found out about his heart condition after visiting the pediatrician.  


I found out that Juliana had HLHS when I was 20 weeks pregnant. Was hard to understand everything at first but I managed to stay stress free for Juliana's sake. I wanted her to be as healthy and strong as possible..

Juliana had her Norwood at 4 days old on Jan 3, 2011. We were at CHOP until she was discharged to go home on Feb 7 2011.. That was the scary part but we made it through..

On March 31 we were taken to CHOP by ambulance since Juliana was having some of those inter- stage signs they tell us to watch out for .. Happy to say that Juliana enjoyed the two hour ride from NJ to Philadelphia !! Have to say CHOP ambulances are very comfortable.
During that stay she had her first cath with Dr. Glatz on April 4th 2011.

Juliana had her Glenn on May 25th 2011. We were in the hospital for 4 days.. Couldn't believe it ..

Sept 26th 2011 we went back to CHOP for Juliana's second cath, do to the fact that her blood pressure was very different in her arms then in her legs. We were there for 24 hours.

Juliana has been doing really well and she amazes me everyday . We had a cardiology appointment on Jan 29, 2013 at CHOP . Doctor says she's great. However her being great we can not move forward without the Fontan..
She will not need a cath before Fontan since everything is the same, they will do an MRI instead..

Juliana is scheduled for her Fontan this April!!! I believe from the families I know she will be the first to get her Fontan..

Juliana is 2 year old!! She is my sunshine , my reason for breathing, my everything ...

I had to add this pic of Juliana and Xavier on his bday!!


Silas Layne Jennelle was a bit of a surprise. In February 2013, I found out I was pregnant. A few weeks later I also discovered that I had pre-cancerous cells on my cervix and that my chances of children after him was low. He was already my little miracle baby. I carried Silas all the way to 39 weeks and 6 days and on October 14th, the day before his scheduled due date, he was born. He was perfect in every way. A 8 pound 14 ounce baby boy that was exactly the same weight I was when I was born. It was love at first sight and I already infatuated with motherhood. The next day the pediatrician alerted us of a heart murmur and requested an echo to investigate. Shortly after, we learned Silas had a hole in his heart. Being new to the world of CHDs I had no idea what that meant and expected the worst. My hormones were out of control from delivering the day before and I feared my baby was not going to survive. we were scheduled a cardiologist appointment 2 days after and Silas was diagnosed with a fairly large VSD. The cardiologist gave Silas a month to try to see if the hole would close on its own but said there was a 90 % chance he would need surgery. After 2 and a half months of Lasix and monitoring his breathing, the cardiologist suggested we move quickly towards having the surgery because Silas was in the beginning stages of heart failure. So, on January 9th, 2013, at 8:00 AM at Children's National in Washington, DC, they took my baby boy back to repair his maligned 7mm VSD and a smaller ASD that we recently learned about. His surgery went beautifully and the next day they were able to remove his breathing tube. Our big boy had tubes removed each day and by the second day was moved down to the heart and kidney unit and out of the cardiac ICU. Two days later we were able to return home! Words can't describe how scary it is to see your baby after surgery but I know we are one of the "lucky" ones to have such an "easy" experience with our sons open heart surgery. Silas had no issues feeding or gaining weight and  if you did not known about his heart condition you'd never be able to tell looking at him. I will not be an advocate for CHD awareness and make sure to love my baby everyday and be thankful for his success. I love my little warrior. 

1 comment:

  1. You set up a lovely party for Silas’s birthday celebration and he seems to have enjoyed it a lot. He is looking very cute and adorable in these wonderful pictures. I’m also arranging a party on the occasion of my daughter’s 7th birthday this week at one of the popular event halls for rent.