This is Tuesday afternoon. Just about to shove out of the ICS, hoping not to return there for a long while but probably not forever. London has been fighting a cold for the last week...fight, fight, fight LuLu! It's not getting her down, we'd just like it out of here. She had to have known we were going home. Her spirit so light and happy. I think we broke some sort of record for a babe her age having such a "short" (19 days) stay after a liver transplant. Ironically it's been our shortest admittance to PCMC in the last few months. The last 2 were over 20 days long.
It was emotional leaving, a lot of mixed feelings and an unmeasurable amount of gratitude. A lot has happened within these hospital walls this last year. I no longer have a nurse, aide or any other hired help-but, we are doing just fine and LOVING, I mean LOVING every minute of it. REALLY-- LOVING it! She is a new-and-improved-LU, a happy baby, a health"ier" baby.
We walked into a beautifully decorated home, welcoming sweet LuLu back. I recognized Hallie's handwriting immediately as I've seen it my whole life. I started crying right when I walked through the door. Relived no one hit us on the freeway coming home, glad she was to safety. I wished there was a big flashing sign on my car "Baby inside that was just given life, then fought hard for it. Mum inside will HURT you if you bump us, knick us, don't signal are on your phone or even look at us wrong." There were a few close calls as there always are with Utah drivers, but arrived unscathed. Our house feels better when London is in it. We are forever grateful she has returned for a long, BRIGHT life ahead but are absolutely saddned that LuLu's joyous return home was paid at such a high cost to another family. We love them dearly.
FIRST cupcake. Made by Hallie, Boston and Jonah. The house was covered in these beautiful, hand made Valentines all over the walls. Little shouts of love and encouragement. A lovely note from "Jonah" to London...next to the most beautiful bouquet of flowers that didn't stay in the house long after my Mum-in-law reminded me she cant be around fresh flowers right now. One of many "weirdisms" we must think about right now. The flowers found themselves a good home with a
friend who really needed them yesterday. Thank you Hallie, from me and
her.
JuJu and LuLu. I was surprised to see her at my house when we got home, even though she was my first call to tell her we were leaving. She played it cool as she was already at my house while Hallie was putting on her finishing touches. Ju had ALL my laundry folded & my house a wee bit cleaner when I got here. She then informed me our Mum was at the store picking up some basics as everything in my fridge was either gone or rotten. We had a wonderful meal brought in by family, thank-you Owens'. Food tastes better. Life is sweeter. Being a Mum has never felt better. We are lucky, lucky people.
"I will Grandma"
I don't know how Hallie had Jones all day and still managed to pull this off without me knowing... that's a best friend for ya. Thanks HTP. (Hal-the-Pal) She had it down to my favorite music playing. My father-in-law Bri introduced me to the best CD I've ever heard the day of transplant, it's what I needed to get through and it's all I've been listening to since. It's called Nearer, think you can find it on iTunes. I think you should get it.
I've never seen London reach out and grab and kiss someone like she did Jonah when he got home from Hallie's last night. Warmed my heart. He is a GOOD brother. Has been since the day she was born. He is an exceptional boy who has endured much this last year. I am so proud of him. So, SO, so proud. He deserves a medal and a trip to Disneyland...it would have to be his own personal trip as London will avoid "Disneyland" and Disneyland type places her first year post transplant. (ie: the store, church, crowded, closed in places, kids...so pretty much everywhere but our haven, HOME)
Just for good times...this is Hallie and I about 23 years ago. We've always been best friends but this last year has pulled us very tight and there we will stay. I'm lucky to say I have Ramsi and Leslie in that same time frame of friendship, 25 plus years and the rest of my BFF's in the decade plus range. Lucky, lucky me. Old me too, I guess.
Her "new" set of medications that I have warmed up to the last few weeks. Most all of these are given twice a day. Prograf (the most important and LIFELONG anti-rejection drug) given at 9 and 9. Not suppose to be a minute sooner or a minute later. I have timers that go off for me and recieve text message reminders before hand. That's cool. Most of the others also given around 9 and 9 and a few in between. London will continue to be at the height of her immunosuppression the next 3 months and hopefully taper down the drugs over the next year--but never stop or she will reject her liver. The best way to explain London's current health situation is that she's traded a fatal disease for a better one. It is a disease we are happy to take. (Never thought I'd have to say that) There are
a lot of funny rules to follow and there can be some major side effects from her drugs down the road but we're not going to let ourselves worry about them until/if we have to. Right now just loving life.
Every diaper I changed today, every med/feed I administered felt like an honor. I GET to do this, I am a Liver-MuM and I love it. It is 5:06 AM and I haven't hit my pillow yet but it's okay cause I finally GOT to update her blog with incredible news (this is the only chance I've had) and add some more milk to her nightly continuous feed. I am LUCKY. I am Giddy. I am the MuM to amazing kids. They are my world.
Almost forgot to mention--London crawled today. VICTORY is ours, again and again. It's unbelievable. She might do a back flip tomorrow, I'll let ya'll know if she does.
(I'll give the back story on my next post...MILO'S benefit)
