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I am so honored to share this amazing mama with you today! Magen is a true warrior in the fight to find a cure for Cystic Fibrosis, a disease with which her adorable twin boys have been diagnosed with since birth. I know you will be inspired by both her faith and her unyielding optimism.
I did in fact have a pretty eventful pregnancy while pregnant with the twins. Around 12 weeks I broke out in a rash which was soon diagnosed as Pityriasis Rosea (super uncommon in pregnancies). Once the rash cleared up, I was diagnosed with gestational diabetes and had to follow a strict diet while monitoring my blood sugars for the duration of my pregnancy. I went into early labor around 31 weeks and stayed in the hospital for three days, followed by moderate bedrest at home until the boys decided they wanted to make their way into the world via c-section on August 9, 2016 at 35 1/2 weeks gestation.
My husband and I were given the diagnosis on day fifteen of the boys NICU stay (up until that point the boys were in the NICU to grow and feed). The newborn screening results were shared by the neonatologist and neither of us really understand the news we had just been given. We asked for more details about what their life would look like with cystic fibrosis and were given very few details. We were referred to our CF care team at Texas Children’s Hospital, and a few days later, we spent five hours learning about what it would take to care for our sons.
As you can imagine, with any diagnosis comes grief. We grieved for a while. I can recall many times when during the day I would just fall on my knees and just cry out to God, praying for strength for all of us to make it through this diagnosis. Being new (twin) parents comes with its own set of challenges, and then adding in all of the medications and treatments made it to where there was no way through those obstacles without my husband and I taking on each task as a team. I look back now and wonder just how we managed it all and can clearly see how God carried us through that season of our lives.
We try our best to not keep the boys in a “bubble” because we want them to enjoy the life they have been given, however, we know the most important thing we can do to ensure that they are healthy for as long as possible is to minimize their risk of infections and germs. We do not go many places during cold and flu season and ask that anyone who comes to visit us makes sure they have been healthy for sometime before they stop by. Our friends and family members are so kind to always do little things like take off their shoes, wash their hands, and avoid kissing the boys just to help us make sure we keep our home and the boys as clean as possible. I’m not going to lie, I’m a neat freak by nature, so I don’t really think I would be doing anything different if the boys weren’t diagnosed with CF. I was asked by our care team the first time we met to do everything I could to stay home in order to avoid putting the boys in daycare. I now stay home with the boys and will continue to do so for as long as our care team feels necessary.
Right now the boys do two, thirty minute breathing and vest treatments daily (you can see what that looks like in the video linked in the bottom of the post), one in the morning and one at night. When they are sick we do these treatments four times a day. They both nebulize hypertonic saline, which helps thin the thick mucus in their lungs while the vest helps break up the mucus. The boys are not old enough to understand how to cough up mucus yet, so most of the time they swallow it and on occasion they many even throw it up. They also take digestive enzymes (close to thirty pills each a day) before every meal in order to help with absorbing the fats and nutrients in food as well as extra salt, vitamins and probiotics.
I don’t really consider there to be any other option. We have been given so much in this life, and our boys are perfectly made. We celebrate all their victories just a little louder, and we wake up and hug them a little longer because we know just how special their life truly is and will become. We have an amazing army of family and friends that continue to rally around our fight as we continue to raise funds and awareness for all those living with cystic fibrosis.
Convincing any two year old to sit still for thirty minutes is a challenge, but the boys are such warriors. It is incredible to see them both sit and handle the treatments so well. When they were babies, they preferred the latest Bruno Mars music videos to accompany treatments, and lately they have been loving “PAW Patrol” while sitting in their oversized Pottery Barn chairs.
Honestly, we were not planning on having any other children due to the 25% chance of any future pregnancy resulting in another CF diagnosis, but God had other plans. We were surprised by our pregnancy in late 2017, and in April of last year after an amniocentesis, we found out that our precious little girl was a carrier for CF (just like her dad and I). Being a carrier means she only carries one copy of a CF mutation, leaving her unaffected by cystic fibrosis (you have to have two CF mutations to be diagnosed with CF). Finding out we were pregnant the second time was so different than the first — we had this thermal disease to worry about, but we wanted to celebrate the gift we had been given regardless of the diagnosis. We knew this little girl was placed in our lives for a reason, and we look forward to seeing how she changes the world, because she has most certainly changed ours!
She is light. Goodness, we are just so grateful that God has a better life planned for us than we could have possibly dreamed. Maylie wakes up laughing, loves eating and adores her big brothers. She keeps us all smiling and is my constant reminder that God shows up even when life feels a little dark.
Ugh, yes! When Maylie was around 8 weeks old, all three kids were sick, and I lived in the master bedroom with Maylie while William (my husband) cared for the boys. When one of the boys gets sick, we make sure they keep washing their hands and wipe down everything we can, but truthfully, once one of them gets sick, the other is normally two days behind.
A description of what CF is can be found here (I encourage you to read to learn more about the disease):
I want people to know that with the help of The Cystic Fibrosis Foundation, the diagnosis we received two and half years ago is nothing compared to what parents heard even twenty years ago. This disease has gone from a life expectancy of nearly 6 to almost 40 years old because of all the treatments, medications, and research that is available to all the families fighting this disease. We are hopeful that in the coming years there will be a medication that will work for 90% of the CF population which will treat the underlying genetic defect for those living with this disease.
I think the biggest way to help is to 1. PRAY and 2. GIVE. We fight each day by bringing awareness to this disease because we are hopeful that our children and all of those living with CF will see a day when they no longer have to fight for each breath. Following our family’s journey on @oursimplehome and @thewrightfight Instagram accounts is a great way to stay connected with our story as well as to keep up with our prayer request. Giving is a huge part of this fight and without all of the funds raised by so many passionate cure seekers for the CF Foundation, we wouldn’t see so many people living and thriving while battling CF. If you feel led to do so, we encourage you to help support our efforts to raise funds for The Cystic Fibrosis Foundation here:
The Wright Fight – A link to us sharing our video via video: https://youtu.be/W1A7dy3Lldk
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