Home sweet home

Thursday we had an outpatient cardio appt with Dr. Rychik. This was just to make sure everything was good to go before we left for NC. Jensen had an echo and was not so happy about it. We did all of our best distraction and anti-squirming baby techniques, but he was just not cooperating. Our echo tech actually said, "Can you please make your baby stop crying?". Now, being cooped up in a hospital makes one a little more feisty than normal so I replied not-so-kindly, "He's 4 months old so.....NO!" Ha!

Anyway, the echo showed a tiny bit of fluid around his lungs, small pulmonary arteries, and some valve leakage. Nothing was too concerning and we were given the green light to fly home without oxygen! Jensen did have a high Lovenox level (in my foggy, sleep deprived state, I don't remember explaining this medicine before so these are the shots we give him twice daily to thin his blood). We were told to titrate down a little and have his blood work re-drawn on Monday.

Friday morning at the buttcrack of dawn, we loaded down a taxi and set off for the airport! This trip was completely unremarkable with no dramatic sprinting across 4 terminals or fighting for room on the plane. It was a very pleasant, quick trip! As soon as we got back to our house we all took a very long nap. It has taken the weekend to get things unpacked and back in order. Jensen is back on a somewhat normal sleeping schedule.

His eating schedule is still off bc he is teething and the poor kiddo doesn't want to suck on a bottle. We have tried every teether known to man and nothing really works. We just apply Orajel as often as we can and pace around the house trying to calm him down.

We had a cardio appt today in Cary with Dr. Robinson. He was happy to see him so alert and playful after such a mass of complications from the last surgery. Jensen's echo today showed NO fluid around his lungs (thank you Lasix) but he still did have small pulmonary arteries and valve leakage. This is to be expected after the massive amount of work that was done on his heart. The plan is more of a "don't rock the boat" situation. We need to give him time to grow and let his pulmonary arteries grow. He will be needing a cath to expand his stents in about 6 months to a year.

We are so thankful to be home with our boy. Post-Glenn life is supposed to be much less stressful than interstage. I am waiting to see if that is true ;) After everything Jensen has gone through, I can't help but beam with pride when he coos and plays with his toys. Every smile is a miracle. Every laugh is the sweetest sound. There was a time Jeremy and I thought we had lost our baby for good and we are beside ourselves with joy that he seems to be ok. Even if he does have deficits from the strokes/seizures they are not nearly the severity that we thought. We are so blessed to have this little cutie in our lives!