and from everything they have told us, her surgery went as expected. We have witnessed yet another miracle and know that God is answering our prayers and the prayers of everyone else. Thank you so much for your thoughts and prayers today...it was a long, nervous, scary, and now good ending day. I wrote down everything from the time we got to the hospital until we left:
Pictures of Hope before surgery
6:45 am - Jerry and I got to the hospital so we could spend time with Hope before they took her for surgery. She was wide awake and looked at us with her beautiful blue eyes. She seemed to be saying "trust me I will be fine". We met Kim...the surgical nurse that would be calling us for updates when Hope went back for surgery. We also met Debbie who was a nurse that would be in the operating room with Hope and all of the doctors. She was extremely nice and put our minds at ease.
Jerry and I went to the Ronald McDonald Family Lounge to wait for updates.
8:30 am - The anesthesia team came and took Hope to the operating room. We gave her lots of hugs and kisses and cried when they wheeled her through the doors of the operating room.
10:15 am - They are ready to start the incision. They put in a new central line and they had to do some preparation for the Sano Shunt. The Sano Shunt will connect the right ventricle to the pulmonary artery. She is stable and doing fine.
11:20 am - She is on the heart lung machine and they are beginning the repair. Nothing unusual or unexpected has happened.
12:15 pm - They are repairing her aortic arch. After that is done they will work on the Sano Shunt and then take her off of the heart lung machine. She is still doing fine and nothing unexpected has happened.
My dad arrived from Kentucky - it was a long drive for him and he left this morning at 1:00 am...what a trooper! We really appreciate the support and know it is hard on everyone.
1:20 pm - They finished the repair and now need to get her off the heart lung machine. They will do an echo and take a look at everything they have done. It will take at least another two hours to clean everything up and make sure there is no bleeding.
My mom, Marilyn, and the kids all came to the hospital. They were planning a day at the Children's Museum, but enjoyed the Family Lounge so much they decided to spend the day with us.
2:10 pm - Hope is off the heart lung machine. The echo looks good. She doesn't know whehter or not they will leave the sternum open for heart swelling. She will know by the next update.
3:15 pm - They will be leaving the sternum open and there will be a clear covering over her chest. She will also have drainage tubes that will help her get rid of the excess fluid. It will be at least another hour before she is finished.
John (my brother) arrived along with Big Jerry and Rosie (Jerry's mom and dad). I know how hard it is for everyone to get to the hospital and spend long days with us and we really appreciate all of the support we received today!
4:30 pm - They are finishing up with the dressing and she should be back in PICU in half an hour. We can see her in about an hour. Kim will call when we are able to see her.
Ron made it to the hospital to lend his support. Paul loves spending time with Ron, so it took a load off everyone having to run around after him. Dad put Paul to sleep and mom spent time with him while we all went down to grab a bite to eat.
5:00 pm - Dr. Mavroudis came to see us and tell us about how the surgery went. He told us that the surgery went as he expected and that we may need to do a balloon procedure in the future to open her super vena cava. He told us this may or may not be necessary, but they would be looking at it on the future echos.
6:00 pm - We were told we could see Hope. The whole family was able to go in and see her, but we could only go in 2-3 at a time. I have seen a lot of pictures and I basically knew what to expect, but I can honestly say that it was harder than I ever imagined to see my sweet little girl all puffy with her heart ust beating under a basically see-through bandage. I don't think anything could prepare a parent too see their little baby like that. I know it saved her life, but my heart hurt so much to think of everything she has gone through in her young life.
Pictures of Hope after surgery: