Journey to 100 - Lily's Big Day!

Lily's big day has come and gone. It was a roller coaster of emotions. We arrived in Same-Day Surgery at 7:30am. Kraig and I were feeling confident and a bit of expected anxiety. Lily, on the other hand, was happy as a clam and just a bit sleepy. She was taken back to put on her over-sized gown and socks. We were thankful for the grips on the socks just in case she decided to take off walking on those slick hospital floors :) She looked very cute in her get-up, but it started to become very real for Kraig and I. Lily's Rockstar surgeon, Dr. M, arrived to talk quickly with us and to let us know he was feeling great about her surgery. We waited a while to meet with the anesthesiologist. At 10:00 they came in and went over the ins and outs of anesthesia and the heart and lung bypass machine. Kraig signed the dreaded release forms, we walked her to the end of the hallway, kissed and hugged her goodbye, and off she went. The worry started setting in instantly and we had a 5-ish hour wait ahead of us.

At noon-ish a liaison nurse came to let us know that they had all of her lines set (IV's, Arterial Line, Central Line, Foley Catheter, Ventilator, and NG tube) and they were getting her ready for heart-lung bypass. At the second check-in around 2:00 she said she went on bypass just fine and Dr. Rockstar was well at work on the surgery. At 4:00 we learned that the whole surgical procedure was done and they would be closing her up soon. While the rest of us were getting this news, Kraig ran downstairs and happen to run into the surgeon. He greeted Dr. Rockstar with "What the hell are you doing down here?" and was answered with "Well, I needed a snack!" He picked up a bite to eat while they were cleaning her up, dropped the two surgeons from Riley off at their taxi, and returned to the operating room. He returned to our waiting room about an hour later. He let us know that the surgery went as expected and that he had made the decision to not close her up. She had some issues with her Coronary Artery when they tried to close her up. This is not abnormal at all and they plan to close her chest sometime today.

It took about an hour before we could see her. We had prepared ourselves by viewing photos of other heart babies post op. Some may find this gruesome, but when you are in the place we are, it is important to use these hard-to-see photos as learning tools and for awareness. This is why I will be including her post op photos at the end of this post. I hope they are of some help to you in understanding the state Lily is in right now and for other families to prepare for their big day.

When we saw her for the first time, she was in the CICU and had two nurses at her side. She was stable. She had a mesh dressing over her open chest, three chest tubes, two exterior pacemaker lines "just in case," an IV, an arterial line, central jugular line, ventilator, foley catheter, oxygen sensor, respiratory and heart rate leads, Somenetics sensor, and EKG sensors pads. It was a lot to take in, but also exactly what I expected thanks to the other heart moms who posted post op photos. The best part was the triple digit oxygen saturation.... see the blue "100"

We decided to get some sleep last night since she will be completely sedated until her chest closure procedure. I called in about 2:00 am to check on her and everything was going well. They were tweaking meds to stabilize her blood pressure and had to put her on an insulin pump. Otherwise, she had an uneventful night.

I will quickly list her medications for all those heart moms out there...

NaCl

Insulin

Lasix

Cisatracurium

Nipride

Nitroglycerin

Epinepherine

Milrinone

Fentanyl

Precedex

We returned this morning around 7:30. She looked about the same. There was talk about closing her chest today. I prettied her up a little with some leggings and a headband and I think that made her feel better :)