We all need to “Rock on!” as Isaac and Marshall suggested this a.m. as I was sipping coffee trying to recover from a near sleepless night… So here we are. And we are at it again… Please send us some good, strong thoughts and big prayers if possible. First thing this a.m., we learned that […]
As a mama of four boys (one with an extraordinary heart), worry happens. Especially for Marshall. How do I divide the normal newborn stuff from the heart baby stuff? Especially now. There is no way to sugar coat this: Marshall is worrying me tremendously. His well baby checkup yesterday was fine (he is up to […]
We have been home one week!!!!! And Marshall is thriving! His weight is up. His appetite is huge. He’s output totally grosses his dad out 😉 (but it is awesome having an extra set of hands on diaper duty.) We just had our first hometown cardiologist appt this a.m. Marshall’s “heart looks good” and “echo […]
Thank you to the Leahy’s for the rocking outfit. Marshall’s brothers put on his hat 😉 We are off to Syracuse on this mad snowy day to see our hometown cardiologist. Please send good thoughts. Deep breath…
We ran out of skimmed milk three days early. Frantic calls to the Boston team resulted in ….drumroll, please: Marshall can FINALLY nurse again!! He will need a chest xray to make sure everything is ok within three days. But. Wow.!!! Marshall has cardiologist appt in Syracuse Wednesday…here’s to more hope. And more coffee. My […]
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Someone please connect us with someone who has a centrifuge. They cost more than double my first car – a whopping $10k. We need one for a few weeks until Marshall can resume his full fat diet.
Marshall ripped out his NG tube during an xray today. The nurse agreed to let him eat without it for 24 hrs before they put it back in. So far, so good. (And I managed to get him to take a bottle too!) They also had to rebandage his belly from the “Supermom Terror Incident” […]
The CICU was full (as of last night.) From what I’m seeing and what nurses have told me, the step down is full. All of this and I wonder if every patient here feels like Marshall does. It seems Marshall hates medical apparatus. I won’t share the horrors of the ventilator experience. Yesterday Marshall yanked […]
We just got the call. They will be closing in the next hour or two. Here’s to hope that this will allow him to move to the next steps (weaning from the ventilator and feeding). And maybe just maybe this will make us one step closer to having him back in our arms…
themiracleofmarshall 