Today lincoln had a cardiology appointment at CHOP. It was scheduled for April 1st but got pushed back due to all of the COVID-19 madness. His last appointment (3 months ago) we discovered the Porcine valve that was placed at the Mayo Clinic 2 years ago is starting to wear out. That’s making the blood regurgitate up into the right atrium which is not good. … Continue reading An overdue update

  Four years ago Lincoln had his first open heart surgery. It’s hard to believe! The memories of being in Minnesota are still so fresh. The endless SVT, the external pacing wires we used more often than I ever anticipated, the Ronald Mcdonald house. It was the most challenging and scariest time of my life. I will never get over hearing the team tell me how unstable … Continue reading Lincoln’s 4th Heartiversary!

Lincoln has been pretty sweaty at night so we took him to CHOP to see his cardiologist. We did the typical 24 hour Holter monitor, 12 lead EKG and and echocardiogram. Lincoln has been pretty congested lately and it’s always troubling having to figuring out if it’s his heart that’s causing low oxygen saturation, the virus, or if the virus is effecting the heart. Our … Continue reading Check up!

Happy 3rd birthday Lincoln! I love Lincoln’s birthday so much and this year we are celebrating in Disney World! This month always reminds me of commuting back and forth from CHOP when Lincoln was there. It was such a scary time and being a new mom to a medically fragile baby had me down in the dumps! I know how lucky we are as some … Continue reading Lincoln turns 3!

Today we are 4 months post op! It’s so exciting that Lincoln did so well while out there and is now thriving at home! I can not believe this is my life. Every single day that we are not in hospital is the best day of my life. Now that things have settled down with Lincoln, I can’t help but look back on all of … Continue reading 4 months post op! 

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