Baby Penelope fighing botulism

Hello, my name is Nikki and I am reaching out to help my very close friend Melissa Heim and her family in this time of need. Her three month old baby was diagnosed with a very rare illness, Infant botulism last Thursday (1-12-17) and continues to remain in the ICU trying to breath on her own. Below is a letter her mom wrote last week to thank her family and friends. It gives more insight into their situations and what they are dealing with. Thanks for the support!!!

Okay, everyone, get comfortable because I have a thank you, followed by a story, followed by a PSA:

First off, I want to thank everyone who kept us in their thoughts and prayers yesterday. It meant a lot to us to know that we have an army of support behind us and it has really given us strength to get through what is to come.

Tuesday night, our daughter began to struggle with feeding. We thought she was possibly having tummy troubles so we let her be; something didn't feel right but we decided to let her sleep and see how she did at her next feeding. By 5:00am Wednesday morning the 4 of us were on our way to the ER because she could not stomach any liquids. After x-rays and a tentative diagnosis of tummy troubles, they admitted her to prevent dehydration. Things still felt off because she wouldn't eat, swallow, and she was quickly becoming weaker. By early Thursday morning, she was transferred to the ICU and given a tentative diagnosis of Infant Botulism. If you are like us, you have heard people joke about "Don't do that or you'll get botulism" but you never actually knew what the heck it meant. To answer some of you, no we have never given our 3 month old raw honey (or anything else besides breast milk); though botulism is most popularly attributed to it, honey actually only makes up about 15% of infant botulism cases these days. The toxin most commonly spreads via dust and soil and it is very difficult to pinpoint from where exactly it was contracted. This disease is EXTREMELY rare. The cliff note version is that the toxins paralyze the bodily functions, either quickly or slowly. Our daughter was hit hard and fast; by Wednesday morning, she could no longer swallow, by Thursday morning, she could no longer cry and by Thursday evening she needed to be intubated because she could no longer protect her airway. Thanks to the speedy diagnosis and quick care of the doctors, nurses and pharmacy, they were able to jump through the necessary hoops to have the motorcycle currier transport the medication from the CDC in San Diego to our daughter within 7 hours. The recovery for Infant Botulism is slow and grueling but she is expected to make a full recovery.

My PSA is this - trust your gut. We didn't know WHAT was wrong but we knew it wasn't right. We didn't want to be the over cautious parent but we grabbed our bags and headed to the hospital at an ungodly hour of the day in hopes that we were totally overreacting. We could never have guessed that our daughter was struggling to eat as the result of spontaneously ingesting a "Category A (potential bioweapon agent)" sometime in the past 3-30 days. Despite the insistence by medical staff that it was not preventable and like winning the worst lottery in the world, I have run the last few days over and over in my mind trying to find what we could have done differently to prevent all of this from happening. The specialist this morning told us that we were very lucky we brought her in when we did; if we had second guessed ourselves, we could be experiencing a much darker reality right now. While our baby is expected to be hospitalized for weeks, I'm looking forward to the day that this is merely a crazy anecdote that we tell at Christmas parties. I can't wait to hear her laugh again and feed her and watch her smile at her brother. We're not out of the woods yet, but we at least know we're on the right road.