Ashton's journey so far

Back in December of 2012, Sal and I found out that we were expecting our third little love, due to be born early in August.  Sal was terrified, not feeling as young as he used to be.  I, on the other hand, was thrilled.  I was carrying the 3rd child I tried to convince Sal we couldn’t live without. 

On March 25th, 2013, I had my 20-week ultrasound.  I was very excited.  We found out we were going to have a baby boy!  Cole and Gabriella were getting the baby brother they had been asking for.  Then, we got additional news.  The baby’s heart did not look quite right.  The doctor saw what he thought was a hole in the baby’s heart.  He then referred us to a prenatal cardiologist.  It felt like a lifetime between our first ultrasound on March 25th, and April 5th when we met with the cardiologist.  We went to the appointment optimistic about what the first doctor noticed on the ultrasound.  Then, we got the news.  The defect was much more than a hole in his heart.  Our unborn baby was diagnosed prenatally with a very serious heart defect known as Pulmonary Atresia with intact ventricular septum.  We were told that after birth, his heart would be unable to pump blood to his lungs for oxygenation.    Usually, the treatment for this condition includes a course of 3 different bypass surgeries, one of which would have happened at just a few days old, the second, which is typically done between 3 and 6 months old, and the third, which is typically done between 18 months and 3 years.

After getting this news, we were devastated.  I cried more than I ever remember crying in my entire life.  The next few months, I felt like I was in a fog.  I felt so sad, it was difficult to function.  I knew I needed to be strong for my family, so I did the best I could. 

On August 9th, 2013, Ashton Rhys Romero was born at 5:20 PM, and weighing 5lbs 13oz.  He was beautiful.  I got to spend just a few minutes with him before the NICU team whisked him away.  It was an agonizing 6 hours before I got to see him again.  They then told me that he had stopped breathing after they gave him a medication to keep his heart functioning… a known potential issue with that particular medication.  That news was terrifying, but he was okay. 

In the first few days of his life, doctors did many tests on Ashton’s heart, and due to his very unusual heart anatomy, even compared to other babies with the same condition, they determined that heart transplant was the best course of action for him. So when Ashton was just 6 days old, he was added to the national heart transplant list.

Here we are, several months after Ashton was born, and we’re still waiting patiently. At the beginning, while waiting for a heart, Ashton was on a medication that is used to keep the blood in the heart flowing to the lungs the same way it does when in utero. That medication is not meant to be a long-term solution, and it can have side effects, so back on November 26th, he had an open-heart surgery called a bidirectional Glenn operation.  He recovered from that surgery very well.

Ashton continues to have difficulties with eating, which started when he was a little over 2 months old. Early in January, Ashton had a g-tube put in for feeding… another surgery.  It was a minor surgery, but surgery nonetheless.  He healed quite nicely, and he gets about 80-90% of his nutrition through the tube. 

Ashton had been doing so well for such a long period of time, that the doctors and other hospital staff felt that it was best for him to continue to wait for the transplant at home, with his family.  On February 27th, Ashton came home.  We are thrilled to have him home.  He is, quite possibly, the happiest baby I have ever known. 

Despite the troubles Ashton is having, overall he is doing well. We sincerely thank everyone for all of your prayers, well wishes, gifts, and offers of general help. We truly do appreciate everything that everyone has done and continue to do for us and for Ashton.

Thank you again for everything.

 

Sincerely,

Gina and Sal Romero

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