Brooke Anne, March 2004

Brooke Anne

Brooke Anne was born on September 25, 2003 at the Hospital of the University of Pennsylvania (HUP). We found out about her diagnosis at my 20 week ultrasound. My sonogram tech was a friend of mine since I used to work for my OB/GYN office and it was quite obvious that something was wrong when she stopped talking to me and began seriously studying the image of the heart on the ultrasound monitor. I looked over and asked her, ”why are only 2 chambers of her heart appearing on the monitor, can you get a better view?” She quickly got me off the subject and began talking about if I was excited it might be another girl. When my husband and I were ready to leave, he went outside to start the car with my then 4 year old daughter, one of the doctors of the practice said he needed to speak with me before I left. I asked him right there in the hallway if it was something to do with her heart. He asked if I could get Joel, my husband and meet him in his office. The nurse went outside and got Joel who had no idea what was about to happen. I put my hand on his arm and asked him to please not to get mad with the doctor but they need to speak to us. What we heard would change our lives forever…

Brooke was born at 2:26am after being induced at 9:00am the day before. Apgar scores were 8 and 9 and after about 30 minutes they brought her in to see us. She was making a whistling sound when she tried to breathe and they only let her stay about 5 minutes. I never got to hold her, they took her next door to CHOP (Children’s Hospital of Philadelphia). Our nightmare began the next morning when they wheeled me over to see her at about 10am. She was so small, on life support and had so many wires and tubes I lost it. I thought I was strong and prepared since I took the tour, boy was I WRONG!!!

Brooke ended up having a cyst of the lung which could not be detected on any machine. She had CT scans, MRIs, chest X-ray after chest x-ray. Dr. Sarah told us it may be congenital lobar emphysema which would mean a portion of her lung would have to be removed. Her surgery took place on October 1, 2003 by Dr. DeCampli. Sure enough, there were cysts on the right lobe of her lung, (CLE) and he removed them and also put a 3.5mm B-T shunt in her heart. Both surgeries were performed without the bypass machine in about 3 hours. On October 3rd she came off the ventilator and began breathing on her own. We finally saw her little face. She got a small infection and we had to stay in the hospital for a few extra days and, on the day we left, they put a NG tube in since she was not eating enough. We were discharged on October 13, 2003.

She defeated the odds, which were so not in her favor. If she survived the surgery since she was so little and had 2/3 of her right lung lobe removed she would have to be sent home with a trach so she could breath. We came home with NOTHING. She was on Reglan, digoxin, Zantac, Lasix and ½ of an aspirin tablet every Monday/Wednesday/Friday.

Today, Brooke is over 4 months old, weighs almost 11 pounds and is getting ready for the second stage of her surgery. She is our Little Miracle on 34th Street. (HUP and CHOP are located on 34th street)

March 29, 2004 Update

Brooke went in for her stage 2 procedure the Glenn Shunt on March 25, 2004 at CHOP and she was discharged home on March 28, 2004. She had a wonderful recovery and we are very thankful for all the love, prayers and support.