HI Amelie's Angels,
Here is the latest:
Amelie had a very good week, she had two solid nights of peaceful rest. By Thursday morning, I decided she was stable enough to hop on the train to Orange County to surprise young BraveryBoy. He's been at gymnastics camp all week with his cousins, I was desperately missing him while he's having the time of his life staying at my older sister's house. He was SO EXCITED to see me and Sophie Lickl (his other cousin, who flew in from visiting grandparents) he quite literally squealed with joy. We went in the pool, played with cars, and cuddled in the warm sun.
However, less than an hour later, I got a call from my mom that Amelie was in acute respiratory distress, and I needed to get in the car and come home. Well, I didn't have a car. i took the train. and it was 4:37pm. middle of rush hour traffic in Southern California. and I was over an hour away. Amelie was decompensating, her sats in the 80s, despite full 5L oxygen, the highest our machine at home can put out. She has pulmonary edema. Her body is swollen and now her lungs are swollen. It happened in an instant.
Not wanting to take any chances, I carefully explained to Bravery I couldn't stay the night after all, Amelita was(is) not doing well, and I needed to take care of her. I asked, do you want to come home with me, or stay here for two more days? "I want to stay here with Sophie." Ever the dutiful oldest cousin, she promised to care for him and distracted him with Legos. (My sister told me later, she heard Bravery walking around her house singing to himself, "best day ever! best daaayy evverrrrr!" the wee lamb.
My dad drove me back to San Diego. I confess, we weren't sure if Amelie was going to make it much longer. They were holding off giving her pain meds until I got there, in the event the medication, which will ease pain, help her to not struggle, but can suppress strength to breathe and they just weren't sure. Thank GOD my dad was with me. He is always so calm, super chill, and even had me laughing, somehow getting me singing Jason Mraz, distracting me.
During which time, Daddy held Amelie for over an hour, talking to her, sitting her upright, getting her to breathe and be strong. I am convinced he kept her alive in those moments. I walked in the door and she immediately opened her eyes. then started to moan. She was waiting for me. Her moans turned into labored wheezing, then vocal gasps for breath.
We gave her meds, and my (other) sister ordered immediately delivery of two higher powered air compressors, which gave her more oxygen. She was on 10L (which is basically a powerhose of air blasting in your face and up your nose) and yet she was still struggling. Ben and I asked to be alone. We prayed over her. After an hour of watching some of the most agonizing suffering I've ever witnessed, she finally calmed down. After her evening meds, she fell asleep. I cried and prayed and talked and sang.
Once her sats came back up in the 90s, we lowered her oxygen to 6L, and with the help of hourly administered meds, she rested. I laid in my bed, knowing I needed a good hard cry (which I don't want to do in front of her, she hated when mommy cried), and I fell into fitful sleep. Until about 5am, when my sister woke me up. She was moaning, desperately grasping for air. We turned up the oxygen, her sats improved, but her breathing was just heaving, like someone trying to breath with a big bear sitting on her chest. She was again in acute respiratory distress.
I woke Hubbs. He held her in his arms once again, and after singing to her for an hour, giving her three doses of OXY and THC, she finally calmed down, and two hours later, (Yes, two full hours of that), Amelie fell asleep again.
This is definitely part of the tug of war Dr. Crawford was referring to. Although this time, she was suffering cruelly.
I have decided we need to access her port and start giving her morphine. I don't like it, because the side effects can be gnarly and she cant tell us how she feels, but I cannot watch her suffer like that again. The oxy has been dramatically helpful, but it takes too long in her G-tube and makes her already bloated, distended belly even more upset.
I'm sorry I did not post about it earlier. I honestly was not thinking about being online in that moment. I wanted instead to hold my baby, smell her, feel her swollen hands, and comfort as best I can.
Here is where we're at: For the first time, I told her it was all ok. I told her I'll never leave her, I'll always be with here. "Be not to be afraid, my darling." Hubbs feels acceptance and peace. He's been calm and supportive, and has turned into something of an impressive prayer warrior.
Right now, she's resting. Her breathing dependent on oxygen, medications are making her comfortable.
I'm not going to post a picture of her in this state. I wouldn't want that and neither would she. I don't want anyone to remember her looking so swollen. I'd rather have people remember her like this: