We left three hours later than we had planned and are Massachusetts bound. Trust me, I am in no rush whatsoever to go back there. In fact, it seems like we just left. The threat of Marshall being re-admitted isn’t helping the way that I am feeling right now. Each and every goodbye with the […]
MILESTONE MOMEMTS: In addition to enjoying solid foods, Marshall can now roll where he wants to go. He will be running in no time at this rate ;-). This makes even less time for updating you all. Marshall had his first-since-we-have-been-back-home pediatrician appointment yesterday. Despite the failing heart & scary diapers (which have lessened to […]
Noah (of Noah’s Hope for Heterotaxy) is off of ECMO per the latest update I found 🙂 PLEASE SEND SOME BIG, STRONG THOUGHTS & PRAYERS HIS WAY. And while you are at it, send some for Marshall too please. He has follow up appointments this week with his local teams. Many, many thanks!
Being home with all four of my boys yields such tremendous joy & extreme happiness paired with tremendous sadness. I live moment to moment and don’t have a lot of peace in this exhausting chaos. And the boys and I are constantly wondering when I have to leave with Marshall again. Marshall’s bloodwork from Monday […]
It’s a gray day in Boston. Marshall’s kicking the viral gunk. Yeah!! His blood work is ok, all things considered. His GI system is a bit of a wreck. My instincts believe that the GI stuff is an adverse effect to one of the main meds Marshall takes. He has had wacky (and scary) diaper […]
Marshall’s experiencing some (terrifying) GI issues, there’s some not so great heart stuff going on, and he still has this viral gunk. Please send our baby some really BIG, very strong thoughts. Please.
Marshall caught viral gunk from his brothers. That’s the bad news. The good news is he flew through the milrinone wean. It’s effects last 5-10 days once it stops per one of the transplant & heart failure doctors. So he isn’t out of the woods. But he has found a clearing. It is likely he […]
Time for me to vent. I try not to do that before an audience but I’ve soooooooo had enough. I will preface this by saying the important stuff: #1: I am really, truly, incredibly thankful that the world’s best have turned Marshall’s health around. Without them, our little miracle wouldn’t stand a chance. And he […]
Cancelled. Again. Still. No. Room. In. The. ICU.
Marshall decided to spice things up last night. So much for a quiet night cuddling and watching a movie… First he hurled his meds all over the both of us. Right after his bath. So we cleaned him up. Then he broke out in this HUGE, raised patchy rash. And he rounded out the night […]
themiracleofmarshall 