My Great Strides Story
There are approximately 30,000 Americans living with Cystic Fibrosis. They are Mommas, Daddas, Sissys, Brothers, Daughters, Sons, Friends, and Co-Workers. I walk for them and hope you will support me in my efforts. Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
We had no clue what Cystic Fibrosis was. Honestly, i'd never even heard about it in my life. When Lorali was born we didn't have a choice but learn about it and fit it into our daily lives. In the beginning it was absolutely terrifying. Now, almost two years into it, its still kind of scary but mostily empowering. Enzymes, vest therapy, clinic visits, and neb treatments.... I am passionate about my kids. The fact that I was trusted to take care of a very special little girl with needs that not everyone else has, is in my opinion a huge honor.
In the summer of 2015 Aubrey and I found out we were expecting, super excited! The excitement quickly turned into anxiety and fear once we confirmed that both Aubrey and I carried the CF gene. As we got further into pregnancy, our ultrasounds continued to show "loops of bowel" (bowel blockages) which is a textbook case for suspected Cystic Fibrosis. Fast forward to about 5 weeks before my due date of March 22nd, Lorali was ready to meet us and was born on February 19th 2016! She was this absolutely perfect, teeney-tiny-- little 5 pound 2 ounce 18.5 inch Warrior. It was Love At First Sight. After Lorali was born, I definitely was not emotionally prepared for what was in store for Aub and I in the next two weeks. 24 hours had past since she joined us earth side, but still no poop and because of that they took her to the ICN where she stayed and kicked a** :) While she was there, Aub and I did not leave until midnight each night, to arrive again first thing in the morning. We were so fortunate to be able to stay at a place called "Davids House" that sits right on the Hospital Campus. They provided us with a beautiful room to sleep in, food, showers, laundry needs, everything we could have possibly needed during those difficult times, and completely free! (It was amazing) Anyways... I would spend all-day every-day loving on her, talking to her and telling her how strong she is. " Lorali Elaine... Mummas here right beside you, you are so strong sweet girl, I'm proud of you" over and over again.
The first 5 days in the ICN Lorali was getting enimas in hopes of resolving the bowel blockage. On the fifth day Aubrey and I had been sitting in the Family Waiting Room having a late lunch while we waited for Lorali to get back from her enima when Dr B came in with the news. The enima had perferated her intestine. She needed surgery, like NOW. Imagine somebody asking you "hey can you sign this piece of paper, giving me permission to cut your baby open & fix her" it was a rollercoster ride of emotions, mostily feeling as if my heart had been ripped out of my chest and stomped on right in front of me. Meanwhile, they prepped the OR. I held her, kissed her and told her how much I loved her. How proud I was of her because she is the strongest human I have ever met. The only person who I can look at and everything makes sense. I could tell that she was not feeling good, she was wiggling in my arms and obviously uncomfortable. All I could think about was, what was going on in her belly at that moment. I handed her over to the (wonderful) team of people who where going to fix my Baby Girl. So two things could have happened durning this surgery. One being, they could have "gotten in there" cut out the bad part of intestine and put it back together, no problem... or it could have ended up being that she would need a colostomy bag. I was ready to deal with whatever was coming my way but thankfully, after a 7 hour surgery they were able to clean out her belly cut off the "bad parts" and put it back together without any other complications. When they brought her back to her spot in the ICN the emotions are almost indescribable, I was so not expecting to see her that way. She was unrecognizably swollen from all of the fluids she needed durning surgery AND she was on a ventilator. I'm not entirely sure what I was expecting it to be like post-surgery but there I was again with my heart on the floor and the wind knocked out of me. She was kept on the ventilator the entire next day for the sake of letting her rest. That was HARD. I just wanted to hold and feel her on my chest. Instead I was reminded not to touch her because it was too stimulating and that I could only talk softly to her. OH man was that a hard pill to swallow. Even still, there I was... "Lorali Elaine... Mummas here right beside you, you are so strong sweet girl, I'm proud of you" over and over again. The day after that, she was taken off of the ventilator. More days went by feeling like a life-time per day. Right before Aubrey and I were about to call it a night, I went to change her diaper and there was POOP. OMG! Our excitment was through the roof!! My heart had felt like a million pounds, up until that moment. I finally could see the light at the end of the tunnel! As things kept looking up and more days passed Lorali reached all of her goals like eating, gaining weight and pooping regularly! After a total of 14 days we took her HOME! Let me just tell you, for what she went through and accomplished two weeks was INCREDIBLE. Not to mention, she was 5 weeks early! From birth to now... Lorali has kicked some serious butt!
Lorali Elaine stands in font of me today, as an awesome (almost) two year old little girl who is the LIGHT of so many lives! She is a force and I am so proud to be her Mom.
I'm asking you to donate to this cause. Cystic Fibrosis isn't talked about enough and is not funded enough.
Come on out Family and Friends for a BEAUTIFUL walk. JOIN OUR TEAM. Support our Lorali Elaine! If you have questions, ask me! We make team shirts, yours to keep!