Happy Birthday Uncle JT

This is an update from Amelie's Auntie "Penny" (because our girl had trouble with her G's)... 

Today is JTMONEY's Birthday. Amelie was born the same year that we lost him. I am sure he is looking over her (with his chiseled body and beautiful face) right now as she sleeps in her bed- like the Fairies floating on her mermaid colored walls.  

A few days ago Lulu started having increased chest congestion, inability to handle her secretions, and her oxygen levels have been dropping. I came to San Diego late last night to be with her, Amy and Ben. I walked into her fairy room and found Amy sleeping next to her- they were in the same pose, with the same nose (didn't mean to make that a rhyme) and Lulu's little tiny hand was wrapped around my sister's finger. You can hear Amelie's labored breathing and it kind of sounds like a cat purring. I'm not going to lie, it's really hard to see her like this. Amy woke me up in the middle of the night and let me trade places so that I could sleep next to her. I sang her the song I always sing her, "Goodnight my someone" from Music Man; changing the words to "Goodnight my Lulu". The night was a constant repetition of changing diapers, giving meds, checking breathing and heart rate, and reacting to the beeping of her monitor. 

This morning she seems to be having more trouble breathing. Her chest collapses when she takes in oxygen instead of expanding. Grandfather says that not only are her lungs filled with fluid, but that she is breathing maybe 9 times or less per minute. The average person breathes closer to 20 times. 

We don't know how much longer our baby girl has, but until then, we are trying to make her as comfortable as possible. She certainly has surprised us this far. I will keep singing to her so she knows I'm here, and I found a perfect song: "La la lu" changed to "little Lu" from Lady and the Tramp:  

"Little Lu, Little Lu
Oh, my little star sweeper
I'll sweep the stardust for you

Little Lu, Little Lu
Little soft fluffy sleeper
Here comes a pink cloud for you

Little Lu, Little Lu
Little wandering angel
Fold up your wings close your eyes

Little Lu, Little Lu
And may love be your keeper
La la lu, La la lu, La la lu"

JT, watch over our girl and give her all of your courage and strength. Happy  Birthday. 

Love,  

Auntie Penny