Here we are

 Writing about our journey as a family, and my journey as a mom, is therapeutic. Ellie has given me permission to share her story. My hope is that it will help someone else feel not so alone and hopefully show how great God is through the trials we are given  

 Well, here we are. Nearly three years after Ellie was diagnosed with an eating disorder. God has used this time to break me, draw me closer to him, break me some more, and draw me even closer. I have learned a lot in these past few years. To help you better understand where we are now, I need to backtrack to when Ellie was about 8 years old and give you a better idea of how we arrived at where we are. When Ellie was 8, she was diagnosed with Celiac disease and Hashimoto’s (hypothyroid). According to Ellie, this is when her thoughts about food began. She suddenly was eating differently than everyone else. Despite eating a gluten free diet, she has struggled with stomach pains after eating for years. 

Any time we bring it up to doctors, they write another prescription or tell her it is her anxiety. When seeking treatment for her eating disorder, we were told it was refeeding pain, or more anxiety. Ellie has been weight restored one time. Besides that, she has been 100 lbs or less. After being in residential treatment 3 times for her eating disorder, we pulled her out and brought her home a year ago, in December 2023. She was vomiting multiple times a day and wasn’t gaining weight. She was very sick. I truly believe that sending her to treatment was the worst decision we could have ever made. It wasted valuable time when we could have been getting to the bottom of her issues and got her the correct medical interventions. 

In January of this year is when Ellie’s health really took a turn. We took her to the ER for severe stomach pains. She was throwing up and couldn’t keep anything down. Through some scans they discovered she only has one kidney and a large ovarian cyst. 

We got her into an OB who recommended surgery to remove the cyst. The surgery for the cyst was successful, but I will never forget the look on the doctor’s face when she came out to see me. She took me into a room that had a whiteboard. 

She said “Jen you are never going to believe this. While I was doing Ellie’s surgery, I noticed she has two uteruses.”

What????? She drew on the whiteboard what Ellie looks like inside.  It’s a rare condition where the woman has one kidney and two uteruses. This means Ellie has been having two periods, two sets of cramps every month. This is dangerous because one of the uteruses doesn’t have anywhere to drain and can be life threatening. 

“Of course she has two uteruses. Why wouldn’t she?” I was thinking. This child just can’t get a break. After we found that out, we really thought that would solve the stomach pain problems and she’d be ok. Except it didn’t. 

We spent months trying to find the right medicines to stop her period. In the meantime, she continued to suffer with painful periods and continued suffering from these stomach pains. 

Ellie’s quality of life is really non existent. She’s lost all of her friends. She doesn’t leave the house except to go to church. She can’t eat or keep anything down. Her weight is now so critically low. I think she feels like everyone has forgotten about her and has just left her. She describes this as very isolating. 

It is really so convoluted. Ellie did or does have an eating disorder. However, there are many other issues also happening inside of her body that we are desperately seeking answers for. I asked her the other day if she still has eating disorder thoughts. She said “No. I took my body for granted and now it just won’t work. I just want to eat, gain weight and be healthy”

Ellie is desperate for answers. She spends most of her time alone in her room. She has used this time for extensive research. She found out that there are a series of compression issues in the stomach/intestines that cause the same exact symptoms that she has. 

It really seemed like we found a lead on finally getting an answer. I immediately scheduled her for a second opinion at Cleveland Clinic. Cleveland Clinic is supposed to be the best of the best. Well, not always. The dr took a look at her, read her file and said “It’s your anxiety. Try some yoga.” Ellie began to cry and spoke up “Dr, I have been researching a very serious compression issue and I think this is what I have …”  The dr said “Good job studying but no”. She immediately shut Ellie down and we left. Ellie just cried. 

So now what? After Ellie continued to suffer for a couple more months and was losing more weight she’s now critical. My once active and healthy 17 year old daughter, who is 5’7 is only 90 lbs. She can’t walk very far before she’s just out of breath. She’s getting overheated and sweating out of nowhere. She’s so ill. 

Ellie’s favorite thing in the entire world is our church. She wasn’t well enough on Sunday to attend. As soon as we got home Ellie asked “What songs did you sing at church today?”

I couldn’t remember. She said “What do you mean you don’t remember ?” My mind doesn’t work that way, but hers does. She has an amazing ability to remember things. She can recite every worship song we sing at church and knows all of the lyrics. She remembers when we sing the songs and notices if one is taken from the mix. She loves Christian music. She made a playlist on Spotify called “Jesus saves “. I highly recommend it! 

To get back to my point here- I found a group of parents and patients on Facebook that are dealing with compression issues. They are all telling stories nearly identical to Ellie’s. When I was researching doctors, one was mentioned over and over as being the best in the country. Thankfully, he’s right in Pittsburgh. People travel from all over to see him. Let me give you all of his titles: 

Associate Professor of Surgery  

Chief Intestinal and Multivisceral Transplant - University of Pittsburgh 

Director, Gastrointestinal Rehabilitation and Transplant Center - GIRTC  

Staff Surgeon Liver and Small Bowel Transplantation, Starzl Transplantation Institute (STI)  

Department of Surgery, University of Pittsburgh Medical Center, Pittsburgh, PA, USA.  

He’s a BIG deal. I called his office and the scheduler was so very kind and got Ellie an appointment in December. After we scheduled an appointment, which was at the end of October, things kept keeping worse. The other day, on a whim, I googled this doctor’s email address. It was worth a try, but a man that busy wouldn’t possibly email me back. You guys, I emailed him at 7 in the morning and I had an email back by 9. I was shocked. If someone that busy can return my email, so can anyone else. His response said that he was so sorry to hear about her decline and got her testing and appointment moved up to the next two weeks. I almost cried. Finally a doctor who was listening ! 

In the meantime I needed to figure out how to keep Ellie nourished so she’s not on death’s door by the time we see this doctor. I reached out to her GI Dr in Pittsburgh and I wasn’t all that polite. He was one of the ones who told her to see her psychiatrist. After one particularly harsh exchange, he called me and apologized. He saw how drastic her weight loss has been and agreed we are at a critical point. One more lb and her weight will be in the 80’s. As someone who is the same height at Ellie, I can’t even imagine. 

So today is our first step in getting Ellie on the right path to her healthiest self. She’s being admitted to Children’s hospital in Pittsburgh where they will insert an NJ tube. This is a feeding tube that bypasses the stomach and goes right to her intestines. She will have to stay in the hospital until they can see she’s tolerating feeds and also until we get home health set up for her. I will be there with her. I will have to come back for work Monday, but my mom has also offered to go down to be with her so we have to wait and see. 

Then, we go back to Pittsburgh on the 14th for extensive testing and on the 19th again to see the doctor. We hope for answers. 

Thanks to God, I have come a long way since 2022. Back then, I just cried all the time and felt so hopeless. Now, my full trust is in Him to heal my baby girl. 

Pray for all of us. Pray for me as I juggle two jobs, and being a mom and a wife  while driving back and forth to Pittsburgh. Pray for Mike as he starts a new job on Monday. Pray for Annie that she is not left on the back burner. Pray for Dylan too. He prob  also feels like a forgotten child.