Zachary's Journey

On June 12, 2006, a beautiful baby was born named Zachary Michael Vega, 8 lbs and 13 ounces and 19 1/2 inches long. There was no sound coming from his mouth but he was crying. It is kinda foggy so my times may be off. I was sedated right after they pulled him from my stomach. Zachary's dad had come and told me there was something with him. He was feeding Zachary and he was turning blue. He called the nurse and they took him to make sure his throat was clear. They noticed a submucosal cleft. Anytime with a cleft they go to the heart. So they did. They requested what I believe was a CT Scan if not it was an MRI. But any how.... They found a problem with his heart. They seen what they believed to be a Vascular Ring. Zachary's dad told me there was something wrong with him, but I replied, he will be fine... I was in denial. Not realizing this. I truly believed he was okay.

Until there was a Cardiologist in my room talking to me. I swear all I could see was his lips moving and nothing coming out. It was really weird. I guess my mind was going 90 MPH. Because when he walked out, it hit me..... THERE IS SOMETHING WRONG WITH MY BABY! and I broke....... Crying uncontrollably.. It was horrible.. The realization that there is something wrong with your baby.

Vascular Ring =Anomalous arteries congenitally encircling the trachea and the esophagus that may produce pressure symptoms

Basically the arteries that came off the heart were wrapped around his trachea and esophagus and causing him to suffercate. This could only fixed by heart surgery and couldn't wait.

So with all his problems, Acid Reflux, laryngomalacia, hypocalcemia, congenital heart disease (his heart was also slightly rotated and the arch goes the opposite way than it normally goes, hole in his heart, retracted chin, bifid uvula, soft pallet didn't work which caused nasal regurgitation, hypotonia, Immune Deficiency Disorder and many more issues.

At 7 days old on June 19, 2006, Zachary was transferred from St. Jude Hospital in Fullerton to Childrens Hospital in Orange. On June 21, 2009, Zachary was 9 days old and they did heart surgery to remove the vascular ring and repair the heart.

Zachary came through the surgery GREAT! He was a trooper and recovered wonderfully! On June 27, 2009, Zachary was released from the hospital. Scared out of my mind how I was going to take care of this baby I couldn't hear cry. Also would throw up out of his nose and would need to be suctioned out, so he wouldn't choke to death.

Only now he had to take 1 ml of calcium every 6 hours, calcitriol to help the calcium sink into his bones, Bactrim as a preventative maintenance due to Immune Deficiency Disorder and Zantac for his acid reflux. 4 medicines for this little guy.

I had to be very careful with Zachary as he would throw up out of his nose. He would sleep in the bassinet and I would have to sleep on the couch and listen in my sleep for the noise of him regurgitating. So I could grab him before he choked to death. My eyes had to be on him constantly as I couldn't hear him cry, so I would not know if he threw up or spit up. There have been and will be many many more issues still and ongoing..

To date Zachary has been hospitalized for 3 times for Pneumonia or viral bronchial issues. He can't be around kids due to his Immune System and can't receive live vaccinations which include Chicken pox or MMR. So if he got any of these it could kill him.

Zachary is doing really well. He no longer has a calcium issue. His last visit the Endocrynologist stated he wouldn't need to come back unless there is some symptoms or issues. His parathyroid gland which we were told he didn't have is some how working now and his body has fixed the issue.

Zachary is only one one medication now for the acid reflux.

Though Zachary still has constant issues and hurdles. Zachary is developmentally delayed. Even though he will be 3 years old next month he is really actually only 1 1/2 to 2 years old. Zachary only speaks mama.... What else does he need, that was my thought.. j/k... Zachary has alot of structural issues in his mouth. With his soft pallet not working, the submucosal cleft, bifid uvula, low muscle tone and retracted chin, this poses alot of problems now and in the future. Zachary will have surgery to correct his soft pallet and submucosal cleft. Zachary will eventually have plastic surgery to pull his chin out. When this will all happen ??? That is the question.... CHOC seems to think he doesn't need surgery but the speech therapist doesn't think he will talk normally until he has the surgery. I will be going to request a Cleft Craniofacial Team at Loma Linda to look into Zach's issues.

On December of last year Zachary seen the Cleft Craniofacial Team at CHOC and I was not to pleased with their Doctors. So I will be contacting Loma Linda to get the 2nd opinion Zachary very much needs to push forward.

For now... I know there is so much to catch up on since I just started and Zachary is almost 3 years old but I will continue at another time.... Take care