Dylan Anthony Zetouna was born October 1, 2009 at 8:35am and weighed 7lbs 3oz.
The first thing we remember is not hearing a cry from him and soon after they told us that he needed to be intibated because he wasn't breathing on his own. This was pretty much a guarantee that he was going to be faced with this disease.
We have had our up and downs over the past 33 days. It seems as if he will take one step forward and two steps back. The first month with this disease is the most critical. Luckily Dylan has been doing good for the most part. Some days have been hard for him but he has pulled through.
He is having problems digesting his food and urinating. His feedings were being tube fed directly into his stomach but he was having difficulty tolerating it so they moved the tube further down so he has jejunal feeds. Also he is keeping all his urine in his bladder until it is overfull and then releasing it so they are putting a catheter in every 12 hours to drain it. It seems as if most his muscles are weak and hopefully will get stronger over time.
The doctors decided to take him off the vent on October 8 and they told us he would last one hour but our little fighter prooved them all wrong and lasted two whole days and it was the first time we heard him cry and WE LOVED it:) He ended up tiring out and how could you blame him...he was losing weight, living off of tpn which supplies all daily nutritional requirements through an iv and only 8cc of breast milk. They had to reintibate him on October 10 and that was a very hard day for us.
Since he was not tolerating the breast milk they were giving him that was going directly into his stomach, and they were unable to use anymore veins, they decided to put in a central line to his heart so they would be able to leave it in permanently in order for him to get his nutrition. The surgeons had to come to his room to perform this surgery. Everyone seemed to think it was a good thing bc they no longer had to poke him in order to find a vein on a daily basis. They were also able to draw blood from there for his daily lab work. Looking back I suppose they were right bc Dylan had bruises all over his hands, arms and legs from the iv and all the failed attempts.
He started physical therapy and occupational therapy and they are thrilled w all his progress. He is moving around much more now.
We absolutely love all the nurses and they have been a blessing. He has a private room in pod g so its like our private nursery.
Dylan's condition has not changed much, he is still not breathing on his own. We have come to learn this is going to be a long road ahead of us and with all the love and support for our family and friends we will make it through this difficult time.
This Thursday they will begin to wean him off the ventilator, please keep him in your prayers.