So we're on our way down this HLHS road now. Heading to the Childrens Hospital of Philadelphia on Monday. Have a whole day of tests planned and meetings with specialists. We even will have a sit down meeting with Dr Jack Rychik - the guy who actually/literally wrote the book on HLHS. We are so lucky to know about Macsen's defect before he's born. So many parents take their HLHS baby home only to have them go into distress and start shutting down days later with no idea what happened to their seemingly healthy baby. I am thankful to know - even though it makes this pregnancy sort of bitter sweet.
I love being pregnant - I'm one of the weird ones that doesn't beg to be induced. One of my favorite times of the day is when I'm reading bedtime stories to my girls - Macsen kicks up a storm during the first story. He always falls asleep by the second :)
Love the blog! Can't wait to hear how the appts go at CHOP! Hugs and prayers always for you guys! Love, BWW
ReplyDeleteWe'll keep you posted!
ReplyDeleteAnd you know that all of us are here for whatever you or the girls may need.
ReplyDeleteThanks for the update! My entire parish is praying for Macsen and all of you. Love to all. Martha
ReplyDeleteLove the blog idea.
ReplyDeleteLove this! I will be checking it regularly and praying for you and your sweet son! Miracles hsppen when prayers are lifted and lots of them are! We love you guys!
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