New Diagnosis

A little back track for those who don’t know…..

Scott and I tried getting pregnant for 1 year. 1 year in, I got pregnant and miscarried. That was one of the hardest things I’ve experienced! A trial that anybody who has gone through can understand the hurt. We started fertility treatments including medications & multiple IUI’s with no success. I then 1 year later got pregnant with Miss Bailey. At 32 weeks, I found out our little girl would be born with a Cleft Lip. An unexpected trial for sure. This has allowed us to love Bailey’s two different smiles, her Wide smile to her permanent smile. Though more surgery’s are to come, it is a trial we can get through!

After fertility treatments go get pregnant with our little Sadie, we finally were going to have another little girl! I had a terrible pregnancy. Major pains almost the entire time. Most of the time I couldn’t even move. It was extremely difficult. I went into uncontrollable labor, was abrupting and rupturing, so Sadie was delivered emergency C-Section at 31 weeks. After living in the NICU with many difficulties as a preemie, this little miracle came home. A month after coming home, Sadie started having what is called Acute Life Threatening Events. She would stop breathing to the point of turning blue needing help to start breathing again. She was admitted to the hospital. While doing an ultrasound on her esophagus, by pure accident (we call it by a miracle), we spotted tumors on her Liver. She was then sent to Primary Children’s Hospital to have them looked at. Biopsies were performed and were sent all over the country for diagnosis. She had an extremely rare form of Liver Cancer. 3% of young children have liver cancer & of that 3% only about 5% have what Sadie did. Again, another miracle, after many appointments, tons of lab work, scans over and over, being put under anesthesia multiple times… 1 year later, the tumors were gone, leaving just scars on her Liver. The stress our family went through was definitely not enjoyable, but miracle after miracle, our faith grew stronger.

We then had issues with Sadie getting a not so fun Diagnosis of C.Difficile for approx 7 months. Let’s just say, we flew through diapers, rash cream, medications and outfits. Definitely not fun for anybody! Right after that went away, Sadie started having vomiting episodes. She would vomit (not just spit up) 12+ times a day with no known cause. After lab work, scans, & biopsies (upper endoscopy), nothing was discovered except that she had gastritis (a red and inflamed stomach). Can I just tell you how frustrating that is to not be able to help your child? She would also choke almost constantly. I never dared leave her in the care of others due to fear of them not knowing how to help her when she was choking. There was debate on whether or not to remove her tonsils due to inflammation from all the constant vomiting. It was decided to leave them for now.

The vomiting slowed, and Sadie started to develop constant diarrhea (I know, TMI) again. When I say constant diarrhea i mean 7+ diapers a day of pure mess. Everybody thought she had C.Difficile again, but all lab work came back negative for any bacterial or viral infections. After months of this diarrhea she started to grow a skin tag on her bum. Between everything going on, we knew something was going on. That’s just not normal. She then went in for more testing, lab work, scans and now more biopsies (upper & lower endoscopy – a colonoscopy). Through those procedures we learned the redness and inflammation was getting worse and spreading from stomach to colon.

A week later, biopsy results came back. Our little Sadie has been diagnosed with what is called Eosinophilic Colitis. Now this is EXTREMELY rare. What this means: Sadie has a lifelong disease that will never go away. It is NOT CURABLE. It is however symptomatic treatable. This is not going to be easy for her or us as parents. But through faith and -amazing medical care, we can endure to the end! There is quite a bit of fear with this that she is also getting Chron’s Disease, which is not the easiest lifelong disease to deal with. Her Gastroenterologist has said, “if and when it comes, it comes, there is no stopping it.” For now, we are trying not to stress or think about the Chron’s, we are trying to help her with what is going on NOW. Living in the moment. Trying to make the best of our every day struggles. It’s not easy, I’ll tell you that much. We are having to make life changes for this little girl & she will most likely he started on steroids soon to try to help keep everything under control. She is a little miracle and blessing, even though she is constantly crying, fussing and grouchy, due to (most likely) pain. We haven’t quite figured that much out yet.

Now, I know this is getting long, but little Miss Bailey has some difficulties going on as well through all of this. Her sister has been getting a LOT of attention between all these doctor/hospital visits and struggles at times. The sweet girl is trying to hold strong as well. A little more about Bailey that I don’t actually tell a lot of people. Bailey has quite a few diagnosis herself. She has been diagnosed with Severe ADHD, Severe ODD (oppositional defiant disorder), generalized anxiety, “possible” depression, sensory disorders & more. Now this, is a struggle. Being honest here, a child with mental health struggles is very difficult to keep happy & take care of. She has tested limits many times & takes a LOT of energy. Even with medications and precious therapy, this precious girl still has a long ways to go. The struggles are real, and it is extremely hard to find others who know exactly what you’re going through. But once you find somebody who knows and understands, you cling to them for all the help you can get. These are not easy diagnosis at all, but we are grateful to know why she is the way she is and what we can do to try to help her learn and grow.

My faith seems to be tested these last 7 years. Through these trials, I have grown closer to my Savior & to my family. I have never been one to ask for help in the past. I am a very independent person. But I have learned, I cannot do this alone. I struggle, I hurt, I cry, I break. Most days I wonder how I’ve made it through. It’s exhausting, stressful & frustrating, all while being some of the best things they have happened to me. These girls are my life. I won’t give up. Though our lives will never get easier, we will learn how to live this lifestyle. It’s hard to ask for help…. but I’m grateful I have a few people out there who will do anything for us. Who truly understand how hard this is. Who don’t just blow off our struggles and think these things are “no big deal.”

Life is about learning and growing. Making friends along the journey. Learning to love. Gaining strength and a testimony of what we believe in. Not judging other, but instead helping them through their struggles as well.

Life is hard, but life is great!