The Good Fight.

He did it guys. My sweet boy made it through his first open heart surgery! I can't believe it! And the best part? He's making such amazing progress. I had planned on updating yesterday when we got word of whether he came off bypass okay. When that update came and the family nurse told us he came off of bypass just fine we broke down as a family. We were all sobbing. That hour waiting for that news was tense. The entire operation was tense, but that final update was a nail biter. Dr. Turrentine had talked with us about the possibility of needing ECMO if removal from the bypass did not go as planned. He even spoke with the ECMO technicians to let them know it might be needed. Just as a heads up. Thankfully he came off of bypass like clockwork and ECMO was not needed. Phew.

The family nurse told us to pack up our things in the semi-private waiting room we were in and to head downstairs where Jonathan and I would get to speak with Dr. Turrentine ourselves. When we got down there she walked us into one of the day surgery waiting/recovery rooms and she handed me something that was really magical. It was the material used to patch Lukas' VSD. The very one Dr. Turrentine had cut from. It even had some of Lukas' blood on it, but it was so neat to see and to have. A little while passed and "the man" walked in after much anticipation. He told us everything had gone perfect. He bled quite a bit, which is why it took a little longer. He told us that the actual operation was over by around 12:30, but it took about 2 hours of coagulation therapy and such to get the bleeding under control and to get his drainage tubes placed. Then he told us something interesting. Both for him and for us. He said the echos before and after birth showed a tricuspid aortic valve (what used to be the common truncal valve). When Dr. Turrentine got in there, it was actually only a bicuspid valve. So it had two leaflets instead of three. He said it was the first time he had ever seen that in a truncus case before. Guess our boy is just extra special, eh? But he was not concerned and told us the valve looked beautiful and should last a very long time. Good news. Dr. Turrentine also told us they did decide to go ahead and leave his sternum open, although he thought he could have closed it. He just decided it was better to follow the standard protocol just to err on the side of caution.

We rejoined our family in the main waiting area and waited. Dr. Turrentine came in again and said Jonathan and I could go back in about 10-15 minutes. So we waited and joked around. More than 10-15 minutes had passed and we were getting antsy. So Jonathan and I decided to meander our way into the unit to ask if we could see him. Dr. Farrell and the cardiology team was standing at the end of the hallway and waved us down to come over. And we finally got to lay eyes on our precious boy. He looked great for just coming out of open heart surgery. He had some extra tubes and a whole lot of IV bags going, but did not otherwise look dramatically different than he had upstairs. I was so relieved. They all talked about how amazing he was doing and how great his numbers were. Dr. Turrentine said there really was not anything he wanted to see change and that they may go forward with the closure of his sternum the following day. 

a little dark, but this gives you an idea of how much equipment he has right now - this was after a few IV bags had been removed

immediately following his operation - the first time we got to see him

Today his forward progress continues and we could not be more pleased. Dr. Turrentine raved about how well he was doing. During morning rounds they said they were forging ahead with closing his sternum this afternoon. Dr. Turrentine was in the operating room, but they said as soon as he was done he would come and see us. Around 2:00 he came in and had us sign authorization forms to go ahead with the closure after starring at the monitors for a few minutes and checking on his continuous lab draws. Then anesthesia came in and we signed their consent form as well. They unfurled our boys numerous IV lines and got him ready to roll. I forgot the OR was in this unit, so when they stopped us at the OR doors I was a little confused. Then I remembered. Silly me. 

heading off to the OR for his sternal closure

Our little rockstar did wonderful during the procedure! They left around 2:30 and brought him back around 5:30. By 6:30, they had turned off his paralytic. Dr. T is so pleased with his progress thus far that he is actually talking about extubating him tomorrow! They will begin slowly weaning him off the vent during the day with the hopes of having him extubated by the evening. From there we work on feedings. First through the NG tube and then by mouth. I'm so excited! 

our little rockstar coming back from the OR - yes I had to have a picture of the moment!

Now that they have his paralytic turned off he is moving around and wiggling his tiny fingers and toes again. I have missed that in the past several days. The best part? He's waking up and he is opening his eyes when I touch him! I even got to hear a little yawn type noise from him this evening. Its the first time I have heard him since Saturday and I could barely keep myself together when it happened. 

opening his eyes for the first time since surgery - "hi mama"

We love him so much. I am so honored to call him my son and I am so very proud of this little miracle. I knew he was a fighter. He showed us so many times in the NICU. He is doing so good and he is blowing the minds of everyone down here in the PICU, even Dr. Turrentine. He is making such amazing progress and doing so very good! Your prayers worked guys! Thank you all so much! Today is the first day of Lukas' new life and it was amazing. I look forward to many more amazing days ahead with him as we watch him grow and improve each day. He's our miracle and I know he is going to do great things one day. I love him with all of my heart and soul. Dr. Turrentine kept that piece of my heart safe and he will never know how grateful I am for doing just that. So to Dr. T - thank you from the bottom of my heart. Thank you for giving my son his life back! 

I will keep you all updated on tomorrow's events and what happens with the extubation. Pray for a good outcome and that we can get him off the vent. This mama is chomping at the bit to hear my sweet boy again. It has been far too long.

Happy Tuesday friends! I hope your weekends were beautiful and bright and your week has been magical so far!

P.S. - we were told down here that truncus is one of those defects that is missed VERY often prenatally. One because it is so rare and two because all four chambers of the heart are present. Sometimes that is all that is looked for during prenatal ultrasounds. We found out initially because our original OB had difficulty viewing the outflow tracks from his heart. I cannot imagine having not known or what might have happened had this not been diagnosed. They said had it not been diagnosed he may have been sent home just like any other newborn. Had we not had this NICU team here....I'm not sure I would be sitting with my beautiful boy today. So always ask questions during your ultrasounds guys! Ask about the outflow tracks. Ask about everything. If there is any question, ask for a referral!