I am so broken hearted tonight. Back in March, I learned of a six week old EB baby that had been born here locally at the end of January. After being sent home, her wounds worsened and she wasn't gaining weight. Eventually, she was admitted into the Brenner NICU. I went a few weeks ago and met her mom and showed them how I do Jonah's wraps. It was a good visit and sweet baby Jessica won my heart.
Then I went to Texas to help Anton, and when I got back, I texted with her mom some, but never made it back out to the hospital. I was keeping up with her through friends and through her mom, and things seemed to be going okay.
But last night she spiked a fever and began acting very lethargic. Today, her wounds were very infected and she stopped breathing twice. I got a call from her mom around 2:00 this afternoon, saying that they had called her and told her to get to the hospital as fast as she could... sweet girl wasn't going to make it. I immediately called my wonderful friend Rhonda to come and stay with Jonah so I could go be with them. When I got there around 4:00, she had been intubated and they were breathing for her. The doctor, nurse, her mom, dad, and one of her mom's friends were all there, and they were just starting a prayer service and dedication for her, so I was so thankful I got to be there for that. As soon as that was over, they took her tube out and she was gone within a minute or so.
She had the exact same type of EB as Jonah does, but her tiny little body just couldn't overcome the infection. It was the first time I have seen someone die. And she was just a baby. She had my son's form of EB. And I loved her. Heart. Broken.
It is just too much.
I am so tired. I just want to go to bed. But I wanted you to know about baby Jessica and also to let you know that we lost baby Quinn on Saturday. We have lost eight EB Sweeties since the beginning of the year. It is April 9th.
Tonight I feel defeated and worn out. But tomorrow I'm going to go at Jogging for Jonah with a vengeance. I am determined to never stop raising money and awareness for EB. I am PISSED and downright FIRED UP. Jogging for Jonah (and Jessica) is going to rock the house and raise lots of money for research for a cure. I am a woman on a mission. Please consider joining me.
http://debra.org/joggingforjonah
1 comment:
Hi there! I have been following you guys for a while now, since I came across Tripps story! I cannot begin to explain to you how much you all have totally changed my life. I found God again. And I was actually baptized yesterday! ( totally amazing feeling) I just want to tell you I have been spreading awareness of EB everyway I can! my heart feels so heavy when hearing of another butterfly going to heaven! :( although I know they are in good hands with our Lord Jesus its still soo sad! Just keep fighting! As I know you will! Also im checking into the "jogging for Jonah" im training right now for a half here in Ohio which im dedicating to our sweet Tripp! Love you guys prayers never ending,
Ashlee from Cincinnati
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