This Time...

This day two weeks ago the decision was made that Lukas would undergo his truncus repair the following day. It came after a weekend of distress and turmoil where Lukas went from simply having an NG tube to being on a ventilator. We watched everyday as he got progressively worse and we cried more times than I think any parent ever should. The night before his operation induced both a sense of calm and a sense of fear. It all came about so quickly and unexpectedly. I mean, we were slated to go home earlier that week (in hindsight I am so thankful we never made it home). His changes came about rather rapidly and his decline was sharp. We stood by and witnessed things I would never wish on anyone. 

Today nearly two weeks after the operation that gave my little boy his life back I get to sit and watch him sleep peacefully at home (yes we are home now!). I get to watch him be a regular newborn for the first time since his birth. This morning I found myself reading through my Facebook status updates and reliving the rawness of the moment I handed my son over for his operation. It was a moment I had thought about a million times, but it was so much more emotional and real than I ever could have dreamed. I knew this operation had to be done and I knew it was the only way my son's life would be spared. That day I literally handed a piece of my heart to that surgical team and just prayed to God that they would keep it safe. I'm blessed to say today that they did. The team of nurses and doctors at Riley Hospital for Children gave my son his life back. They kept him safe and they fixed his broken heart. I thank God everyday for every single person who was there for Lukas. Every person who made contact with him and with us. Every nurse who cared for him and every doctor who examined him. Without them I'm not sure I would have my little warrior today. We came so close to losing him and the staff at Riley will never know how thankful I am for everything they did for our family. Each and every one holds a dear, special place in my heart. 

If you had told me a year ago that I would be writing this blog and that my son would be undergoing open heart surgery I would have looked at you like you were delusional. Yet, here we are. I've shared Lukas' journey with each of you and its been such an amazing, empowering experience. I cannot wait to share many more happy, beautiful moments with you all. You each held my hand as we worried and waited. You all prayed for this little boy and I don't even know how to begin to thank you. Words alone don't seem nearly appropriate enough for the gratitude I feel in my heart. I hope you all will accept my words as a token of my true, deep appreciation for everything. For reading his story. For praying for a little boy who needed help. For thinking of us and our family no matter the distance. Thank you.

Nearly two weeks after Lukas' surgery he is breathing easy at home. We were released from Riley on, ironically, Riley's 4th birthday. On that day our big boy got the best present he will ever get - our family back together again. Our family is whole and complete now. Its been a magical few days. It felt so familiar yet so uniquely different bringing him home for the first time. Our last day at Riley was filled with many visits from NICU staff and doctors who had heard the happy news from Dr. Parent, one of the first year cardiology fellows who performed the echo before his discharge (he also did the echo upon Lukas' admittance to the NICU). The car ride home felt so surreal. I sat next to our boy and just kept starring at him because I could not believe that day had finally come. Our baby boy is such a dream. He is perfect in every way. We are so very blessed that he was otherwise healthy, aside from his wonky heart parts. Over the course of our hospital stay numerous tests were performed on Lukas to see if everything else was healthy and working properly, as this was important information for the medical team to know. Since truncus is sometimes associated with a condition called DiGeorge Syndrome, a DiGeorge genetic probe was conducted just days after his birth. Those results came back negative. They looked at his lungs and pretty much every other organ system. Everything was perfect. That was a huge sigh of relief for Jonathan and I. We were very blessed that our little boy would not have to be battling other issues on top of his truncus. We knew many families who shared the NICU with us were not as blessed and for them my heart ached. I know we are very lucky in a number of ways. When things started getting bad with Lukas it was so very hard to see how blessed we truly were and continue to be. It was both the best and worst experience of my life. It was the worst because he's my son. I never wanted this to happen to him and I would have given everything for it not to. It was also an eye opening experiencing. There are many things in my life I will never again take for granted. It left me forever changed.


While we know this is not the end of the road for Lukas, we are basking in the beauty of his first open heart surgery being behind us. My boy shocked us all with his strength and perseverance. He's an inspiration to me and I am so very proud to get to be his mama. I promise his birth story and lots and lots of photos of our precious little fella are coming soon. 


Happy weekend friends! The 4th is tomorrow and I wish you all a safe and festive holiday!


P.S. - Happy 1 month birthday to Lukas! A month ago he came into our lives and expanded our hearts!