Yesterday, walking down the stairs in CHOP's Atrium carrying my 3 week old son in my arms - descending from the upper levels that house the Special Delivery Unit and the Cardiac ICU among other highly specialized centers for various serious childhood diseases - I felt such a weight lift off my heart. Even though we had been discharged almost a week before, this descent with Macsen was so significant for me. Never in a million years did I think we would be leaving the hospital and Philadelphia at this point in our journey - and with our beautiful son. I wish I could visit my terrified self who after stepping in the elevator desperately focused on the posters; on the laces in the little kids shoes next to me; on the increasingly painful pressure of my fingernails digging into my palms so I wouldn't openly sob in front of all those strangers. I wish I could tell myself to take a deep breath and believe that we would be ok - that I would get this moment - this buoyant descent from terrifying to so close to normal I forget my baby still has half a heart. Sure we'll be back in a few months for round 2 but Macsen will hopefully be bigger and stronger and even more of a rockstar.
Until then our job is to keep him well. He can't get sick or he will have to be hospitalized. We are so excited to see our friends back home but have been strongly advised to keep Macsen in temporary isolation - at least until his 2 nd surgery. It's not forever. We have also been told that anyone that comes in contact with him needs to be current on their vaccines. All you guys who know me know I hate vaccines - I got the DTaP shortly after he was born and did agree to the HepB for him because he has gotten blood products and will most likely get more in the future. Sucks though. I hate them. So be forewarned and please don't take it personally if we avoid get togethers, parties, and large groups. And I probably won't let you hold him, might inspect your hands before you can touch him, and you may get punched if you try to kiss him. As much as he looks like a regular baby and as badly as I want him to be, he isn't.
Ack! Enough of that!
Excited to be headed home! Excited that we only have 839 miles left :) and we are all together.
Excellent post! I literally laughed out loud when I read "you may get punched if you try to kiss him." I had to fight the urge SO MUCH to cover him with kisses! Some ideas for visits: If taking a shower & changing into a clean outfit is impractical - after thorough hand washing (w/fingernail brush) make sure everything is covered with a baby blanket before holding him. That won't help with air-borne germs, but, at least those on clothing/skin? I am thinking of the protocol for CHOP - they did not allow kids in the CICU for a reason... you are asking us for such a short time (2-3 months) of isolation - with a potential LIFE-LONG impact. I know it is easier for me, because I am up here in MD, but - I hope everyone understands. I am ready to visit virtually though - bring on some FACETIME or SKYPE! xoxoxo Auntie G
ReplyDeleteLove this!! Momma Bear is ready!! Look out world - even though Macsen is amazing, we can wait a little longer to smother him with kisses unless of course it's through skype
ReplyDeleteThinking of you as you drive down and sending lots of healthy germ fighting love!
Tante Trina
So wonderful that you are coming HOME! Everyone here is so excited, that I think at this point we understand any guidelines that you put forth! Miss you guys! Christina
ReplyDeleteBeyond happy that the family is heading back to Enterprise...imagining that you would like to set up your home like the "E.T" home...actually might be perfect for Halloween, LOL!!! Looking forward to giving you and my cookies a great big hug! Safe travels...
ReplyDeleteGood for you for laying the law down in advance with the germs! Being in isolation during interstage is definitely tough. It's hard for people to understand how fragile they are when they look like a "normal" baby! The stress of keeping them safe can be consuming so just remember the heart community is here for you! Those of us that are post-glenn remember interstage like it was yesterday and will do whatever we can to help you get through it!
ReplyDeleteI was re-reading though your blog today and I cried when I got to your "And the hits just keep on coming" post from May. Knowing the pain you felt at that time and being so terrified not knowing what his birth would bring....and now to see Macsen kicking HLHS butt is just so amazing. He truly is a little rockstar!! Safe travels home!
Hey hot mama - I am with you 100%! I told you before I won't even step foot over there unless I get an invite...and I have no plans for the girls to visit...although would love to host your girls for play dates if you can drop them off :) And to be honest, you don't have to apologize to anyone for asking, stating, demanding these things. Doesn't matter who you ask it of - my thoughts are that anyone who takes offense, isn't really concerned about YOU and YOUR family but rather their OWN needs and wants. When the twins came home, I blacked out the front windows with me "visitor rules" including (1) If you didn't call before coming, please leave. (Well, hopefully I said it nicer, ha ha!) Anyway, we hope that you have a safe trip home! Love you and can't wait to hear that you are all under the same roof - YOUR roof! :) XOXOXOXO, BWW
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