Kaia, our angel

After she passed...



I haven't been able to write this blog. I wanted her online story to end with the last happy day that Kaia had in her short life. I don't want to talk about her downward slide after tuesday. I will skip Wednesday and go straight to Thursday, the last day of her life. Kaia slept the entire day. Dad and I knew something was wrong. She was very lethargic and bobbed her head with every breath, a sign of labored breathing. We pointed it out to the doctors, and they upped her heart medication. Kaia went back to sleep. We had family at the hospital and went to the cafe while she was sleeping. I came back to her room in the PICU alone. She was still sleeping. I whispered "hi my pretty girl", and she immediately woke up. So, I sat next to her and stared at her and she started panting. She stared at me and wouldn't look away and was breathing really heavily. The nurse said she was just fussing. Kaia never fussed with her eyes wide open before. I knew she couldn't breath. I heard a gag and a choke and I grabbed the nurse. The nurse looked at her SATS on the screen and started pushing panic buttons. I turned around to see her heart rate drop to almost nothing. They immediately started cpr. The doctor told me they had to put the breathing tube back in and asked us to step away but to kiss her and say goodbye first. They had her stabalized, so we had no idea we were saying goodbye for good. But Kaia knew. She did not want to be on a ventilator again, and she did what she had to do to stay off of it. I kissed her little skinny arm, which was pale white from lack of profusion, and I said "I love you baby". She was looking at me the entire time. I stared at her as I backed out of the room and she never took her eyes off of me. We were escorted to, what we now know, is the death waiting room. I think she must have passed and just come with us to that room. She wanted out of there so bad.

We sat in that waiting room for so long, and I could hear the flatline alarm going off the entire time we were in there. I knew Kaia was in the waiting room with us and not in her body anymore. I kept telling Eric that she died, and he didn't believe it. I was shaking from head to toe. When we saw the surgeon coming toward us, we knew. They took us back in the room, and I held her. I held her good and strong and hard for 2 hours. I never got to hold her and walk around. I'd never gotten to put her head up on my shoulder. I did all the things I always wanted to do with her. I gave her a bath. I put her in some clothes. She had never gotten to wear any clothes her whole life. Her chyle fluid was leaking out of her abdomen, but I didn't care. It got all over me. All I wanted to do was go back to the time when she was happy....before we tortured her body....and just let her go naturally. I feel we were so selfish to keep her alive by the means that we did. We just wanted her to have a chance. We wanted her to live and love. I couldn't wait to bring her home and retrain her brain to know that people aren't bad. Kaia didn't like people much after her surgery. Anytime anyone other than her dad and I touched her, she would cry. She hated all the doctors and nurses. She knew they just hurt her over and over again. She looked to us to save her, and we couldn't. I would give anything to take her pain....to trade places. It seems so pointless to live and love and smile when she can't. But we are trying, because we need to celebrate her and not let this destroy us. She wouldn't want that.

When we got home from the hospital, we were devastated. I didn't want to sleep because I was so afraid of waking up. But we were so sleep deprived that eventually it came...for a few hours. At 9:16 in the morning, my phone started vibrating and vibrating, over and over and over. It was a constant vibration that i'd never seen before. I looked at my phone and it said "new text message" then "new voicemail" then "missed call" then "new text message"....over and over and over again. It was all the people that contacted me during the night....but they never came through until, all at once, at 9:16 in the morning, they all came through. Kaia was born at 9:16 in the morning. She knew that mommy and daddy stayed up night after night to watch over her and we needed our sleep. I believe that she held all of my phone calls, texts, etc so that we could sleep. She delivered them all at 9:16 to tell us that she did come home with us. She is here. It pisses me off that she is taking care of us after all she's been through. But she knew that mommies and daddies need taken care of too.

We are devastated. We miss her. We are angry at the hospital. We are still so in love with her. We see her face and hear her voice and still hear the hospital beeps of IVs and alarms. We question ever making her go through surgery in the first place. We just want her to be happy and healthy and thriving. Her little earth body couldn't do that for her. I pray that all who have passed before her will take care of her. Uncle Rick, please take her fishing. Great Grandma DeRubba, please make her some pasta and teach her some italian. Kay, please hold her for me. She loved to be held. Great Grandma Sue, please help raise her in love. Jim, please protect her and keep her around so we can meet up with her. She has now made me not fear death. I welcome the time when I can be with her again.

Kaia, my darling little lion bean burrito, you have taught mommy and daddy what love is. We never knew the extent of love until you. You taught us how to love each other too. You have made us better people. You have changed the people that we were, forever. Every little and big thing that you were, is in us. We promise to give you brothers and sisters. Because of you, we are a family. We owe you the world for what you gave us. I hope we can repay you, somehow.

All our oceans and oceans of love to you, my pretty girl.
Love, mommy and daddy