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Saturday, January 14, 2006 Isabelle is home! We were discharged yesterday evening after requesting that she be discharged last night instead of this morning. The doctor agreed if her chest x-ray was clear and it was! We are SO glad to be home and able to help her recuperate without tubes and wires everywhere. Thank you so much for all your prayers, phone calls, stuffed animals, balloons and encouragement. We truly felt that all of our prayers were answered. And one of the first things to make Isabelle smile was seeing all the balloons floating above her bed. The surgery was supposed to take place on January 12 but on the evening of the 9th we received a call from the surgeon's assistant asking if we felt like Isabelle was healthy enough to undergo the surgery the next day. Because of the season, many of the children scheduled for heart surgery had been canceling and there was an opening on the 10th. She had a slightly runny nose and an occasional cough, but the surgeon wanted us to bring her in the AM to assess her and see if we could go ahead with the surgery. So I frantically started packing not knowing if she would indeed be operated on the next day or if we would be coming home after being told she wasn't well enough yet. The alarm went off WAY too soon and at 3:45 we all started on of the longest days of our lives. Sweet Isabelle was surprised to be awoken at 4:30 and happily watched her Baby Einstein DVD on the way to the hospital. We arrived and had her chest x ray and took her vitals. Surprisingly she was running a tiny fever and at that point I was sure we'd be going home. But after the doctors consulted they agreed that her blood counts were good, her chest x ray was clear and they felt like she would be fine to go ahead and proceed. That is when I started to panic and by the time they took her from me at the operating room doors I was a basket case. For some reason she's never seemed quite as small as she did at that moment. We went to the waiting room and tried to stay busy until we heard something. Dr. Fiore's assistant called us every hour and kept us updated on their progress. By noon we were told that they had repaired the hole, done an echocardiogram to ensure that the heart was working right and they were closing her up! We were both so excited and amazed at how quickly the surgery had gone. By 2:00 we were allowed to come back to the Pediatric ICU to visit our precious girl. As wonderful as it was to see her again, it was quite upsetting to see her connected to so many machines and with tubes coming out of her mouth and chest. She was still on the ventilator and they hoped she would be coming off the anesthesia soon so they could take out the breathing tube. When she started to wake up she began to cry, but because of the tube (which passed between her vocal chords), no sounds came out. It was truly heartbreaking to see her that way. Thankfully that tube and the stomach tube came out soon and she let us all know how MAD she was! She was on a continuous drip of pain medicine, but over the course of the next 12 hours she required dose after dose of medicine to calm her down. She was so upset by the nasal canula that she scratched her face quite badly. Thankfully by the next day she was feeling less of the after effects of the anesthesia and was easier to make comfortable. We played her Baby Einstein DVDs almost constantly as that was one thing that seemed to make her feel better. She couldn't have anything by mouth and it was so sad to see her make the 'please' sign over and over, asking for a bottle, and I had to say no. Late into that first night there was some swelling in her throat from the irritation caused by the breathing tube which caused her breathing to become very noisy, called 'strider'. If it continued to swell they would need to intubate her again. After an almost sleepless night, this mommy was about to lose it, actually I was losing it. I stood there at her bedside bawling and just prayed that He would heal her and keep her from having to be put on the ventilator again. Thankfully they decided to wait and my prayers were answered as eventually her breathing improved. But she couldn't have anything to eat or drink in order to keep her stomach empty just in case they did need to intubate her later. By the morning the cardiologists had detected an irregular pattern in her heartbeat, not abnormal they said, just not perfectly normal. Another thing to wait and see what would happen. And she still could not have anything to eat or drink in case they needed to start her on medication to help her heart to beat normally. I know how much comfort her bottle gives her and the fact that not only was she extremely thirsty and hungry, but that she couldn't have the one thing that comforts her most, well, it really brought out the over protective mother in me. I tried to remind myself that the doctors were trying to do what was best for her, but to look at her so desperate, it was more than I could take and I just couldn't stop the tears. Finally, about noon they allowed her to take clear liquids and I've never seen a child go after a bottle of Pedialyte like that. She was so happy to have her bottle back again, I think she would have been satisfied to drink vinegar out of it. She had her arterial and central lines taken out of her groin and although I know it hurt her to have them removed (they were placed in with sutures) she was much more comfortable afterwards. 12 hours after surgery

Second day in the hospital

Eating and feeling better

Kids visiting Isabelle

First tiny smile

I'm going home!!

After that it was fairly smooth sailing. Isabelle tolerated the clear liquids well and was allowed to take formula the next day. But she was having some stomach pains due to the anesthesia and it's effects on the bowel :( so she wasn't nearly as excited to have it as I had thought. They started her on some Xantac and a laxative and she was happily drinking her formula by that evening. Isabelle was deemed well enough to leave the PICU by Thursday, but they didn't have any rooms available. We were very much looking forward to getting out of the PICU and into a private room since that would mean I could sleep next to Isabelle and not down in the basement of the hospital on a makeshift bunkbed worrying about what was going on with her. It also would mean that all the kids could visit at the same time and we wouldn't have to take shifts in the waiting room with the kids until it was their turn. But it was not to be. Isabelle spent that night in the PICU, but they did allow me to sleep bedside on a pullout chair. It was wonderful to be so close to her and not worry about missing her cries for pain relief or something to drink. I slept almost 6 hours that night and felt much better in the morning. She was up a good bit that night, but was content to lay and watch the SpongeBob and Elmo's World videos that our sweet night nurse had found for her. Isabelle really charmed the ladies who worked back in the PICU. A nurse we'd never seen before would come in because they had heard that there was an adorable curly headed baby there. She enjoyed the attention, but soon was tired of being poked and prodded and only wanted momma. Of course, I was happy to oblige her :) On Friday morning we were told we would be moving to a private room and would be released on Saturday. Her chest tube and pacer wires were removed and thankfully I wasn't in the room when this occurred. Just the thought of pulling out a wire that is attached to her heart is enough to make me gag. By the time we returned to the room she was happy again and the nurse had her DVD playing for her. Around noon we were told that a room was ready for us to move to and we were off! It was wonderful, a place to sleep next to her, our own bathroom and a phone!! We all hung out for a while and when Isabelle got sleepy, everyone left so we could both take a nap. It was wonderful! I think I was asleep before my head hit the naugahide couch cover. We were awakened about an hour and a half later when the nurse came in to get us to radiology for Isabelle's chest x-ray. Needless to say, she screamed during it, but I could tell she was feeling much better since her cry was much louder and stronger than it had been only a few days before. An hour or so after returning to our room the surgeon's assistant came in to tell us that we were cleared to go home! I called Chris who was surprised since we had thought that we'd be staying another night. By 4:45 we were on our way home and I've can't remember a time that home felt such a good place to be.

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