In the hospital, especially the Mayo Clinic, Lincoln is pretty “normal.” He has ebstein’s anomaly and so do 3 of the other kiddos on the unit. It doesn’t make you feel so alone or so much of a problem. Now we’re back home where g-tube dislodgements at the beach are a problem, the regular pediatrician doesn’t feel comfortable dealing with blood thinners, we have no … Continue reading Back to real life 

They were able to pull Lincoln’s chest tube, the pacing wires and his femoral line! He was such a trooper. The chest tube looked like a hose coming out and the pacing wires had tiny hooks on the ends that scraped on the way out (ouch)  The femoral line was stitched in so that was a challenge to cut them out but IT’S DONE!  Lincoln … Continue reading Round 2, Day 7

Lincoln is homesick! He keeps asking to go downstairs to lay on the couch. It’s the first time he’s cried this whole trip. Scott and I are now staying at the bedside because the hotels are all booked and the Ronald McDonald house is full. It’s okay because I’m not sure I could handle being here without scott when Lincoln gets upset. He’s been touching … Continue reading Round 2, Day 6

Lincoln had a big day yesterday . He had a bath, took a walk and although they didn’t pull the chest tube, they think maybe that could come out within the next few days. Lincoln had to get a unit of blood and had to have his potassium replaced multiple times. His skin is very itchy and red so derm is looking at it. This … Continue reading Round 2, Day 5

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