Nicholas Scott Foley
 |
This is our miracle Nicholas Scott Foley, he was born Aug 9, 2002, 4 lbs. 15oz., 16inches long. Here is his story; we were prediagnosed starting at 28 weeks with several complications so Nicholas was born at the University of Penn
Hospital (2 hrs. from our home in New Jersey). The last month of our pregnancy was a very difficult one, we had seen several doctors at several different hospitals, we got several different opinions none of them the same. We were so upset and so confused that we didn't know what to do or what to expect. We chose to have Nicholas at the Children's Hospital of Philadelphia because the team of doctors we met with were amazing and wonderful. We knew no matter what Nicholas's problems were they were able to handle everything.......thank GOD we were right!
We were blessed with him on Aug. 9, 2002, a surprising 4 weeks early all on his own. After a very easy and wonderful labor and delivery
our beautiful baby boy entered the world. They immediately took Nicholas to be checked out by the specialist awaiting his
arrival. After about 15 minutes they invited my husband to see him for the first time he then brought the baby into me, I got to hold him for 5 min., until they took him to the Cardiac Intensive Care Unit
(CICU). He was so beautiful, we cried and we knew no matter what was wrong he was here and we were going to be just fine.
Nicholas was diagnosed with bilateral cleft lip and palate, congenital heart disease and undescended bilateral testes. Nicholas underwent open heart surgery on 08/15/02. (6 days old). His surgery consisted of a right side aortic arch repair, coarctation repair and arch reconstruction. This was extremely scary and emotional. But thanks to the wonderful Dr. Thomas Spray, Nicholas came through with flying colors. On Aug. 16, they tried to remove the ventilator but were unsuccessful. They said he was just to little and needed a little more time. On Aug. 17 Nicholas was off the vent and doing very well. We thought everything was going good, after several doctors and test they told us we were not dealing with a syndrome and that we should treat the heart and lip as two separate issues, several of the other complications he was prediagnosed with did not exist (Thank God). We were relieved and thought we would be home in a few short weeks. Nicholas began having difficult breathing a week later, he has back on the
vent for a short time, 24 hours later the vent was removed and he was doing great. We went through this three weeks in a row. Every Sunday night he would crash, turn blue and
desat. We had every bronch and scope they could thing of done, everything came back negative. No one could tell us why this was happening, they were trying everything to fix the situation, but Nicholas was just working to hard to breath and the retracting was effecting his heart. Finally on Sept. 4, 2002 they were able to diagnose Nicholas with upper airway obstruction, left vocal cord paralysis with subsequent respiratory failure due to postoperative complications. They trached him on Sept. 5 as well as put in a G-tube. Nicholas began to improve and gain weight. After 48 hours his recovery had become a miracle, he was happy and not working to breath. He was smiling and so focused on everything around him. Dr. Godinez had become our savior and given us our son. Within three weeks Nicholas was off the vent and just using a humidivent during the day and at night we was on CPAP for the purpose of helping him gain weight (he burns to many calories breathing on his own). Oct. 2 Nick had his first lip adhesion and nasal stent done. We brought our miracle home on Oct. 8, 2002!!!
 |
We have been back in the hospital twice since Oct. 8 once for a cold and once to have the lip adhesion redone (stitches came undone the day after we got home). But since coming home our beautiful boy is doing amazingly well. He loves music, his daddy and everything around him. He has the biggest blue eyes I have ever seen and he doesn't stop looking. He is learning to appreciate life and everything it has to offer.
Nicholas is doing very well with his trach, he is on a CPAP of 5 during the night and his humidevent during the day. He has doubled his birth weight and is now over 10lbs!!!! They have scheduled his lip repair for Feb. 26, 2002 and palate repair for May 15, 2002. The plastic surgeon has asked us to make sure the trach stays in until then so that his recovery will be easier. I hope after May we will be able to start thinking about decanulation! But I will not get my hopes up....the important thing is I have my beautiful baby boy home.
Carrie
