Matters of Abby's Heart:: Surgery Day

Surgery Day was finally upon us...

We got Abby up at 7am so we could give her the breakfast her surgery team said was ok to have up until 7:30a.m-any clear liquids. Abby was a little confused that we gave her jello, a popsicle and apple juice for breakfast but after a few minutes she dug right in. We were so glad she could have a little something in her tummy! We headed to Children's Mercy about 8:45am. We got all checked in and waited in her pre-op room. Unfortunately the surgery ahead of Abby's was taking longer than expected. Abby was a trooper and waited patiently but started asking for snacks after awhile-it was awful telling her no.

Right before noon they came in and gave her some medicine to make her feel a little loopy in the hopes that she would be ok when we handed her over to the nurses. And thankfully it worked-she didn't cry at all when we handed her off. Our nurse practitioner Stacy told us that since Abby's surgery wasn't a routine (tubes, tonsils out, etc) surgery that we could wait in the Ronald McDonald waiting room not the general waiting room. I was so relieved-the other waiting room was huge, crowded, loud and full of kids running around. The Ronald McDonald room is small, quiet, has a fully stocked kitchen, a living room, patio and a private quiet waiting room. There was a few other families in there but it was nice & quiet. Luckily they bent the rules and allowed the 6 grandparents to join us. Right after we handed her off Vince went to go up to the other waiting room to get the grandparents. A few minutes after he left our nurse practitioner for surgery Dolores, came in and handed me Abby's binky, lovey and headband-that's when it really hit me. My baby was really going to have open heart surgery. We got our first update at 12:45pm-all her lines had been set and they were ready to start the surgery. Our next update around 1:15pm-they had opened her up, her vitals looked good and they were starting bypass. Our last and best update came shortly before 2pm-the repair was done, she was off bypass, her little heart started right back up and the pulmonary valve didn't need any repair! Dolores said it would be a few hours before we could see her but we needed to move to the PICU waiting room where Dr. P would be out to talk to us soon. We were all in shock the surgery only took 2 1/2 hours! About 3:30 Dr P came out to talk to us. He said everything went great! He made the patch for the hole from her heart sack. He said he didn't want to even touch the valve because it didn't seem "worth it" to mess with it. He went on to say that she did not need any donor blood during surgery like we initially thought she would but her numbers were pretty low and she may need to be given some blood in the next 24-48 hours. Other than that everything looked good. Dolores came out shortly after we saw Dr P and said Abby had been moved to her PICU room. She said to ask the front desk in 20 minutes if we can see her. Before she left I asked her if her surgery was best case scenario and she said "No it was better than best case"! I think that was when I really took my first deep breathe in weeks. We were now on the other side of this and just needed to help our sweet girl with her recovery.

We got to go back around 4pm to see Abby-we had been warned she was still on the ventilator. My parents and Vince's dad & stepmom decided they would rather see her without all the wires, tubes & ventilator. And I agreed that it would be very hard on them to see her like that. Vince's mom & Jimmy wanted to see her though so we all went back. I will say as awful as it was to see her all hooked up to so many machines, with so many tubes still in her it wasn't as bad as I had thought it would be. But goodness she looked so tiny & helpless laying there asleep in that bed. The nurses explained to us that before the team could take the vent out she had to "prove" to them she was ready. That means fight against the tube and take breathes on her own. They warned us that it would not to an easy thing to watch. And boy they weren't wrong. About 5pm she started to wake up and fight the vent but after a few minutes she gave up and went back to sleep. The nurses said that that was totally normal and that she'd do that a few more times before she was really ready. We decided to go back to the Ronald McDonald waiting room where volunteers had made dinner for Children's Mercy families. We were gone about 20 minutes-we felt awful leaving her but also knew it was going to be a long night and food isn't allowed in the PICU. When we came back she was still snoozing away. About 6pm she started to wake up, cry and fight the ventilator. It was literally the worst thing I've ever seen one of my kids go through. There was nothing we could do but stand back out of the way and watch and pray it would be over soon. After a few minutes I just couldn't take it anymore and turned around into Vince and stayed that way until it was over. Thankfully after about 15 minutes it was over and Abby was off the ventilator and doing good. She went back to sleep for a little while after all the commotion ended. She was very happy to be able to have her binky back! I finally got to hold her around 9:30pm. It felt just as good as it did the first time I got to hold her in the NICU. About 10pm Abby started asking for milk. Luckily I had brought some of her soy milk with us to the hospital but the doctor said she couldn't have anything to drink until midnight and it would have to be water then and maybe she could have milk around 1 or 2am. Poor Abby just cried on and off for her "milky". Finally around 11:30pm they caved and let her have one ounce of milk. She chugged it right down and then screamed for more. But they said she had to wait 30 minutes to make sure it stayed down. That was a long 30 minutes. But then she had 2 ounces of milk and let her have some ice too. For those that don't know Abby LOVES ice. Her & Will both would eat it all day if they could.  So the ice made her very happy. It was a long night with little sleep and lots of Bubble Guppy watching but we all managed to get about 3-4 hours broken up with alarms, vital checks and labs.