Thursday, October 29, 2009
Penelope and CHD - Part VII
You can read where I left off in Part VI right here.
Sunday night, June 3, 2007 brought a tough decision. At the advice of Penelope's primary care nurse both Scott and I went home that night to get a good night sleep and spend time with Nathaniel. I can't remember the time, but we were asked to come in early the next day for us to say good bye and good luck to Penny.
Of course, we were running late so Scott and I went running to Penelope's NICU alcove so that we could put kisses all over her little body. We prayed that she would be returned to us. Next we had to pack everything up since she would not be returning to the NICU. The plan was that she would go to the PICU (pediatric intensive care unit) and then from there to a regular floor.
Penelope was 6 days old this morning, but she had never eaten anything. All her nutrition had been i.v. up until this point so I had a ton of those 2 oz cylinders with my breast milk which I needed to pack up and ship out. Eventually, the team was ready to transport her, and Scott and I were packed up and the race began. I say race because it was quite a long trip from the NICU in Hartford Hospital to the facilities at CCMC where she was going to be dropped off. There were no less than four professionals walking with us including her primary nurse. They all wanted to rush because they did not want her to crash while en route to the operating room.
We went down an elevator to the bowels of the hospital and then through a long tunnel that ran under ground, under the roads to the parking garage. There were two sets of steel security doors on the Hartford Hospital side and after what felt like an eternity of walking, anther 2 sets of steel doors on the CCMC side. When the first set had been visible, I thought, great we are almost there, but after we passed through those doors, another long corridor loomed ahead. Finally we got to the end and found another elevator on the CCMC side. We turned a corner and it was here that I had to say good bye to my little baby. She looked so helpless in the isolette that she was transported in.
Our hope was that she was going to be a good candidate for the full repair. This meant that the hole between her atriums and the hole between her ventricles would be stitched up. Also, a donor pulmonary artery would be placed where hers was missing. We were warned that Penelope would look quite swollen after the surgery and that the earliest we may not see her until 4pm if the complete repair was done, but maybe earlier if the a shunt procedure was done.
We waited, and waited. I kind of had this feeling that someone would give us hour by hour plays, but that was not accurate at all. We were assigned a family room where we could sleep as long as our child was assigned a room in the PICU. The regular floors in the hospital allow (and accomodate) rooming in for the parents. However, they have a strict policy against parents sleeping in the PICU. That was fine with us, the family room was one of four bedrooms that shared two bathrooms (with shower facilities) and a kichenette. I thought it was great! We didn't have to run back and forth to home and we only lived 15 mintues away. How great was this anemity to those traveling hundreds of miles!
Finally, after waiting in several different waiting rooms looking for someplace to feel comfortable, we retreated to our room. At last, at 1:15 pm, the Dr. himself knocked on our door. We shared a meeting in the hallway to the rooms, and were told that Penny's coronary arteries were not in a good spot and she was outfitted with a BT shunt. He could tell that we were disappointed for this because this meant we would have to come back in 6 months or so, but he said it was definately the best for her. He went on to admit, some doctors are more agressive and perhaps Boston would have done the full repair to avoid having another invasive surgery, but he liked to err on the side of caution to avoid damaging a vitail coronary artery and so he stuck with the shunt. We thanked him for his compassion and his hard work. We knew she had been in good hands!!
After what felt like another eternity, the closing team finished up with Penny, and we were allowed to meet her in the PICU room. I can honestly say about this experience that I walked right in, and then I walked right out. That baby in the bed was not mine. But the name on board clearly placed baby Ringrose to that room. Penelope's ICU nurse came in to explain all of the pumps and the breathing tube (in case we didn't already know about it) as well as the foley catheter, and the chest tubes. She told us that Penny was retaining fluid after the surgery which was more than common and that our baby was being administered lasix to help her heart in getting the fluid off of her. It was scary to go in there an sit by her bedside. I couldn't even imagine having to go through that myself and here was this little girl hooked up in so many places.