Round 2, surgery dayThe surgery went fine Dr.Dearani said, they put the pig valve in and were able to do a maze procedure using a freezing technique. Lincolns heart is again having rhythm issues. They are using pacing wires right now to let his heart cool down a little before we start letting it beat on its own. He has been going into heart block … Continue reading Round 2, Surgery day

It’s times like right now that you start making promises to yourself that you’ll live every single day like it’s the last. When we had Lincoln, I no longer was living this life for me. I just wanted to make his life the best it could be, and the same goes for when we had Luna.  Today we left our room in the PICU for … Continue reading Round 2, Day 3 (pre-op)

Lincoln has been shouting “adventure” to everyone he sees. He knows he isn’t in Disney, but he has no idea what’s to come. He has been collecting Tsum Tsum toys along the way as rewards and he is loving it. Last night before bed Lincoln kept asking for his DiDi and wanted to be home, but he woke up saying “Good morning, sweetheart” which really … Continue reading Round 2, Day 2

And we are off!  We flew into Minnesota today because the day starts so early tomorrow. The schedule is jam packed with cardiologists, the surgeon, the electrophysiologist, some labs, an echo/ekg and a direct admission. We start at 6:30 in the morning! To say we miss Luna is a complete understatement. It hurts not having her here. She is 1/4 of our tribe and we’re … Continue reading Round 2, Day 1

Tomorrow is Lincoln’s 2nd heartiversary ! The sweetest boy in all the land that has spent more time in the hospital than any kid should. He hates the stethoscope but tolerates it, fears the blood pressure cuff but counts down from 20 over and over until it’s done, he looks away through his whole echo but just does it. He tolerates the worst things imaginable … Continue reading Lincoln’s 2nd heartiversary!!

   After further discussion with Lincoln’s surgeon, cardiologist and electrophysiologist it was decided that Lincoln will not get the ablation done before his surgery or during the surgery. At a later time we will address the arrhythmias. There is too great of a chance he’ll need a pacemaker and we don’t want to open him up twice in such a short period of time. I’m … Continue reading The prep work

I used to fear the world ending but once I had Lincoln, I wasn’t afraid anymore. I remember thinking if the world ended, at least Lincoln wouldn’t die alone. It was a sad time and a harsh reality that he may not make it. His little body with the shock pads in place in anticipation of what may come, a chest tube they weren’t certain … Continue reading Surgery on the books

So today Lincoln went into SVT for the first time in almost 4 months. It lasted maybe 5 minutes or so but it was long enough to smack me right back down to reality. The four of us have been having such a great summer; it’s been full of new baby smells, the beach and lots of activities with friends and family. It’s been so … Continue reading More SVT