The begining.

I am knew to blogging, so please bare with me. My name is Heather Whittington. I am the proud mother of a very strong CHD warrior. My eldest sons name is David. He was born with a Congenital Heart Defect (CHD). This means that a heart defect is present from birth ( born with a broken heart). He has several heart defects but that will be anouther blog. I am starting this blog in hope to connect to a few people in a situation like ours. My son was born in December of 2008 and has been in the hospital ever since. Yes, he has never been home. We are not your average family. My husband and I and our youngest son Tony, live more than 150 miles away from the hospital where our son is treated. Our situation now is very routine to us, we simply have a son who we have to travel to see, no biggie. Most people I meet or talk to cannot relate to having a critically ill child so I have very few people to talk about David to.

David has 22q11 deletion/VCFS/Digeorge syndrome. This is a deletion of the portion of the 22 chromosome. He was born with several issues, not only his heart. He is Trached and Ventilator Dependant. This means he cannot do all his breathing on his own and requires a fairly great deal of mechanical ventilation. I am always in pain and cry every night because I cannot hold my son on a daily basis. I cannot hug him or kiss him or tuck him in at night. He is so far away. I think about him laying lonely in the hospital ( which is not true...he gets Tons of attention from the staff whom absolulty ADORE him) and how I wish I could just watch him sleep, or run my fingers through his hair. Having a long term hospitalized child really makes you see life differently. To have them so close yet so far away. To know that someone else is tucking him in, dressing him in the morning, brushing his hair. Thats a mothers job....right?

I feel helpless. Like there is a monster keeping my family seperated, and no matter what I do, no matter how hard I fight, the monster always wins,and he stays, so far away from every one who loves him, from his family. I sometimes look at it like a test or a lesson, but what am I supposed to learn. What is my lesson, how do I, or any of my family, especially David benefit from this never ending nightmare?


David has has several surgerys/procedures during his hospitalization. A little history:

-First OHS (open heart surgery)-48 days, second OHS-5 months, third OHS-10 months

-Trachiotomy-11 days old

-Gasteric Tubaliation and fundoplication- 4 months

He has had 5 heart Cathederizations, suffered renal failure, had an exploratory laparotomy done at 11 months old. He constantly suffers from infection, he is tube fed, a machine breaths for him, he has had several broviac lines (long term IV's) placed. every other day xrays, constant tests and scan, twice a day blood work, Lovinox shots twice daily as a blood thinner, severe cognative and developmental delays, and to much more to list tonight. Ill explain more anouther day
He is almost 2 years old and cannot walk or talk. Thats probaly one of the hardest things for me to deal with. The simple things mean the most. I think I will return tomorrow!

My Handsome Little Warrior

I hope I "Blogged" properly,

         David's Mommy