Stephanie Wolfe

Over the years you all have seen many blog and social media posts about Addie. I never truly sat down to write all about Addie’s journey in one space (probably because there’s really so much), but more and more I get asked about it, so I figured it was time. January 6th, 2014 I found out I was pregnant. I had my suspicions over the New Year but wasn’t sure until a few days later. We waited until Valentine’s and our conversation hearts baby announcement to give everyone the exciting news. A few months later on April 22, Mathew and I went to the doctor for the anatomy scan. We honestly had no idea how important this scan was and chalked it up to finding out if we were having a boy or girl. That morning, we finally decided on names for our baby, and headed to the doctor. We excitedly waited to see if we were having a boy or girl, and found out it was a girl! We cried from joy and decided she was Addison Olivia. Moments later, we were completely broken as we found out our sweet girl had complications, including a sacrococcygeal teratoma. We kept a lot of it to our chests even after our big gender reveal party, unsure of the future of our girl.  We dealt with many specialists before Addie was born. It honestly was a lot and tested us as a couple, as future parents, and as advocates for our unborn baby. We were told about potential complications Addie might have, but nothing was set in stone. Addie has an imbalanced translocation of her chromosomes but no syndrome name, so it was hard to give a definitive yes or no as to what to expect. Many appointments we were asked if we wanted to terminate this pregnancy, but we always said no. I remember praying and just asking God that Addie’s journey be used for His glory. I ended up giving birth to Addie a month earlier than her due date because of preeclampsia and cholestasis. There was a huge team ready to take Addie during that c-section as I vomited during surgery from the stress it took on my body. I never heard her cry once she was out and they whisked her away so fast. I had Mathew follow Addie to the NICU to make sure she was ok as they closed me up.  We spent months in that NICU. 6 months to be exact. Leaving my girl in the hospital each night was so hard, and I stayed 12-18 hours a day just so I would be by her side. Not only that, but I pumped constantly so she would have nutrition. It was something I could control, when other things were out of control. Addie had 6 surgeries, multiple procedures and pokes. We spent our first holidays as a family in that NICU. Halloween, Thanksgiving, Christmas, New Year’s Eve, and Valentine’s Day. We saw things that parents should never see like our child nearly dying right in front of our eyes, Addie’s first seizures, and more. Times where I couldn’t move from shock of what I was seeing. Other times I was screaming my head off or sobbing uncontrollably in the NICU from fear. It was horrible and I honestly try not to think about those days.  During her NICU stay Addie had a PDA ligation for a hole in her heart, removal of her SCT, g-button surgery (because majority of trach kids don’t eat by mouth), trach surgery due to bronchomalacia (flopy bronchial tubes), a craniotomy (brain bleeds from Lovenox shots and fluid from hydrocephalus), and a craniotomy drain revision. After 6 months in the NICU and a total rollercoaster of emotions every single day, Addie was finally able to come home.  Addie came home for 6 days. You read that right. 6. Days. Addie was sent home on ventilator pressures lower than she could handle because doctors were nervous to send her home on such high pressures. Because of that, Addie actually was showing signs of respiratory distress before we were even discharged but we were all too blind to see it. She cried and turned blue and needed bagging from an ambu bag constantly. Nurses weren’t showing up for their shifts and in 6 days we only had half of our shifts filled. Beyond exhausted from staying up night and day, run-down, terrified, and more, I finally realized I couldn’t handle everything and called 9-1-1. Addie returned to the hospital, but this time to the PICU.  Addie ended up staying in the hospital until June. She had been put on paralytics, had EEGs, and much more during that time. But on June 22, 2015 Addie finally came home, just 4 days before she turned 10 months old. We were nervous she would end up back in the hospital again, but things were so much more different this time. Addie was happy, stable, healthy. Since then, we’ve done everything BIG in our house. Addie had a HUGE 1st birthday party, we’ve gone all out for Halloween every year (links at the top of that link to all our fun Halloweens), big Christmas celebrations, and more. We had a button party once too just to celebrate Addie getting rid of her g-button. Life is short, and we have truly seen how fragile it is. So we just go over the top these days, especially for Addie. The past 5 years after have honestly been pretty good. Addie’s had a few hospitalizations and day surgeries here and there but nothing long term. Addie had a cochlear implant put in, but really hadn’t had any crazy surgeries since that first year. Addie’s stayed healthy and we’ve done so many fun things. Addie has participated in sports for those with special needs, has done cheerleading, and even joined a Girl Scout troop! In the mix, we also had Lawson, who is the best little brother to Addie.  In 2019, Addie’s seizures started ramping up and we noticed declines in her health. Addie lost her ability to eat by mouth and had to get a g-button put back in, we started on CBD for seizures caused by Lennox-Gasteaut syndrome (at one point she had over 100 a day),  Addie learned to walk with her gait trainer, and Addie was hospitalized for several months due to a UTI that caused severe dehydration, damaging her kidneys. We worried that we were reliving her first year all over again and would go on another long rollercoaster in the hospital. It was a hard 35 days, but she was healthy by November and in December we were able to take Addie on a Make A Wish trip. We pretty much talk about Addie’s Make A Wish trip daily in this house, nearly a year later. Never in our lives have we had such a magical vacation and it was all so incredibly special. I will forever be grateful to every single person that played a role in that trip. I’ve never seen Addie so happy and she deserved every single second of Disney. We experienced so many beautiful things that week that honestly, I never thought we’d be able to experience as a family. Now that I know that Addie can fly and do these things, I hope that one day it’s safe enough (and we can afford it) to take her back to Disney. Heck, maybe even try Disneyland one day! This year, Addie has done fairly well. She was hospitalized in the Spring at the beginning of everything going on in our world, and after a couple weeks came home. Shortly after, we noticed that Addie’s arms and legs were turning blue/purple and made an appointment with her cardiologist to check on her ASD (atrial septal defect). Turns out, her ASD had enlarged and we scheduled a heart cath. Unfortunately, Addie’s heart cath revealed that the ASD could not be closed in any way other than open heart surgery. Days later, we were all in Fort Worth waiting for Addie to have open heart surgery. It was one of the most terrifying times of our lives. Somehow, by the grace of God, Addie had an incredible recovery. She came home one week post-op and has healed tremendously well. It’s been 2 months since surgery and her incision looks so beautiful. Her scar will eventually fade, but I will forever be reminded of how strong she is. Now that she’s healed, Addie is on less oxygen than she once was, 1-1.5 L vs. 2-3L, had the most EPIC drive by birthday ever, started 1st grade, sprinting off her ventilator for small amounts of time, and is already back to her therapies where she is working so hard to hold her head up as she learns to walk.  So what’s next for Addie? We don’t know! We always let Addie do things on her own time, so we will see what happens next. For now she is so happy, healthy, and kicking butt day by day! It’s Addie’s journey and we’re just here for the ride! Frequent FAQs about Addie “What is Addie’s diagnosis?” Addie doesn’t have a syndrome name attached to her diagnoses. She has an imbalanced translocation of chromosomes 1 & 5, which has caused a whole bunch of different issues. Some of these include her previous SCT, hydrocephalus, epilepsy, legal blindness, deafness, bronchomalacia, developmental and cognitive delays, and a few other things. “I notice Addie’s mouth twitching in videos, is this seizure activity?” Yes, it is. Addie has Lennox- Gasteaut, a severe form of epilepsy that is not well-controlled by traditional seizure medications. She takes Epidiolex, a pharmaceutical CBD, to help control it. After hard seizures, it is not uncommon to see Addie’s mouth twitching.  “What are some of the ways Addie has proven doctors wrong?” When Addie was in the hospital for the first 6 months of her life we were told several times to prepare for her not to make it out of the hospital alive. She obviously showed them wrong! We were also told trach kids only ate by g-tube and Addie worked hard to eat by mouth up until seizures took that away from her. I’m proud of her for achieving that even if it was only for a few years. A doctor also told us straight up that Addie would never walk, yet that girl works so hard in her gait trainer every week in therapy.  “Why does Addie have a trach?” When Addie was born she had trouble breathing and was actually intubated for 3 months. We tried twice to extubate her (one was very traumatizing for me to witness), and she failed. Addie has bronchomalacia which means that her bronchial tubes are floppy. As a baby her bronchial tubes were so flimsy that when she would cry it would slam her airway shut, she would turn blue, and she would panic because she didn’t know how to make herself breathe. Addie’s trach helps her breathe and her ventilator gives her pressure to keep her lungs open. Although her bronchial tubes are much stronger, Addie has horrible lungs, so she still needs her trach to help breathe with greater ease. “Would you do it all over again if you had to?” Every single moment. God has such a unique purpose for Addie and she was meant for this world. To see the hundreds of thousands of lives she’s touched brings so much humbleness to our family. God knew exactly what He was doing when He made Addie. Not only that, but our pain and struggles and joy through this have made us into stronger people. Without Addie, our lives would be completely different. She has changed us for the better. “Ever had an emergency with her trach?” Oh yes. There have been times where we’ve had to do emergency trach changes in a restaurant or on the side of the road. It definitely happens! We never drive alone with Addie and always make sure we can access her quickly if we need. Thankfully, we’re pretty good at doing trach changes or anything emergent very discreetly, so unless you’re really paying attention to us, you probably wouldn’t even know there was an emergency. “Will she ever be without her trach?” This, we will never know. Part of me says no, but the other part of me says who knows. Addie is Addie whether she has a trach or not. She doesn’t let it define her, so don’t you let it define her either, ok?  “How is Addie’s hair loss?” If you have followed us the past few months you may have learned Addie has scarring alopecia. Between a prescribed shampoo, OTC shampoo, and essential oils, we’ve got her scalp definitely less inflamed. Still, the top of her scalp has lost so much hair. We are looking to see a second opinion with a new dermatologist, in hopes they can help her.  “You say Addie is blind but in videos it looks like she can see. Can she see?” Yes, Addie can see. To what extent, I’m not sure. We are also trying to see a new eye doctor. Her old eye doctor said she was legally blind and glasses wouldn’t help her, but the fact that she tracks people and things well, can choose items purposefully on her eye gaze device, and more tell us that she sees more than the doctor thought. “Is Addie able to speak?” Addie uses speech in non-traditional ways. She uses her eyes to choose phrases on her eye gaze device, a speaking valve to express her feelings, and her facial expressions to tell us what she wants or needs. I feel like we have such a special connection that I know what she needs, but I love that we use many different communication avenues for her to be able to express herself. To all of you that have followed Addie’s journey through the highs, lows, and everything in between these past 6 years, thank you. We are so thankful for all your love, prayers, and support. If you’re new here, I hope this helps you get more of a glimpse into who Addie is and why she’s so amazing.  For more on Addie’s Journey, don’t miss the archive!