Recovering.... Phew

We got our first cold last week... ALL of us. It really stunk b/c we didn't go anywhere except his doctor appts which is where one of the girls picked up a bug. Just a cold - sneezing, sniffling, and lots of snot. We hand washed constantly and used hand sanitizer everytime we touched M but he still got sick :( I was terrified. Stupid little viruses send interstage babies to the hospital. Their lungs just can't take any drama. Even though this was a tiny bug Macsen was still having retractions when he was breathing. I took a quick vid with my phone and within minutes his nurse practitioner and cardiologist in PA were looking at it. They told me to keep an eye on it and if it got worse bring him in to the ER. It scared me because here we are coming from one of the best hospitals in the world... And we are very far away from that awesome hospital.
This week was extra sad because one of the moms I came to know while we were both pregnant for our heart babies lost her little one last week. They were home, doing well then suddenly Anya became unresponsive at home. Less than 24 hrs later she was gone. I cried my eyes out when I read her Mom's account of the day... How she never thought this was it... That they would look back on this day a year from now and say "this was just another crisis we weathered together and overcame." Anya was 1 month older than Macsen. My heart is broken for Karen and sister Emoree.
What makes this so hard is how fast the bad stuff can happen. Looking at Macsen I really don't see him as having anything wrong.. He looks so sweet and perfect ... But inside he has this shunt that looks like a tiny straw - it can clot- he has a patch around his attached aorta and pulmonary artery - it can get scar tissue and become obstructed. I keep telling myself to trust everything will be ok. It won't help anything to worry - it will just make me crazy. That being said I do want an in-case-of-emergency plan. I need to know we can get him to the help he will need in time. We see his cardiologist on Monday and will talk about it with her.
We did go to the park today and joined some friends for a picnic. It was the dose of normal I needed to get my head in a better place. Macsen stayed in his baby wrap and slept the whole time. The girls had so much fun playing and completing a scavenger hunt my friends put together. Hooray for normal! Just what we needed.
Macsen was 8lbs5oz today. A slow gain but he's still gaining. We had to double his reflux meds because he was in a lot of pain. He's doing better but he still spits up quite a bit.
He's all curled up in the crook of my arm - just let out a sweet baby sigh. Time for bed.