Baby Madelyn Grace

11/07/2022

Happy happy 13th birthday to this amazing, sweet resilient girl. It’s hard to believe 13 years ago she was fighting for her life. Lying on an infant bed in the highest level of ICU she fought hard. I remember looking at her hooked up to life support and unable to touch, hold or rock this sweet girl. Her mouth was foaming with spit from the tubes down her throat. I couldn’t touch her to wipe it away. Never have I felt as hopeless as a mother. The only touch she could have was during diaper changes. We would read to her, pray over her and cry many tears. We had to trust the many hands that provided amazing care and leave the rest of her story up God. Fast forward to present and she has had covid twice, went to cardiac camp and bounced around a trampoline park today. Her days are filled with medications, a gtube that she gets fed through, and chronic pain that can interfere with daily life. She can’t drink water or juice without thickener but doesn’t complain. She still doesn’t have a lot of independence like kids her age, but she’s gaining it a little bit each day. However, there are a lot of things she can do! I count it a miracle that her life is amazing! She’s full of s***k, love and joy. She loves and lives life to the fullest. Many of you on this page have cared for Maddie and loved her well. You have seen us at our worst moments and still loved us well. You have impacted our family in ways words can’t describe❤️

11/07/2020

Happy 11th birthday to this amazing little fighter! She entered the world fighting and hasn’t given up. So thankful and blessed by all the people who have loved her and us on this journey❤️. Blessed by her sweet nature that makes life fun. So thankful God had guided us each step of the way and given us strength on days when we’ve felt depleted.

10/02/2020

We were blessed to spend a few weeks hiking and wandering in our National Parks in Utah. We had an amazing time and we are so thankful. This trip was another reminder that our sweet girl still has some significant struggles. I think we are so used to g tube feeds, continuous med administration, nebulizers, etc that we forget it’s not everybody’s normal. Hiking at high elevations and dry heat caused some respiratory problems that we weren’t quite expecting. Even though we were prepared, it wasn’t enough. It required a call home to the Dr and pharmacy stop for steroids. Despite it all she plugged through climbing mountains, hopping over streams, swimming and smiling!

09/10/2020

We’ve had a wonderful summer! Casey has had a lot of time off with the airline chaos. Last year was a struggle for Maddie doing online school, online therapies and dr appointments. As school approached we knew we had to make a hard decision. We had to do what is best for her and not what is easiest for us. So we are back into traditional homeschooling. It’s hard to imagine this sweet girl is almost 11!

05/21/2020

Another day of GI testing COVID style. Still no answers. After being on a continuous liquid pump feed she has gained 5 # in a month. She isn’t eating much orally but thankful for the small improvements. All of her clothes are getting too small😂❤️

04/15/2020

There have been a lot of views on this page and questions as to how Maddie is doing. It’s too much to post at one time. It has been an extremely hard 8 months. The hardest we have had in probably 5 years. Some days have been so challenging it’s hard to not be so discouraged. For the past several years after her trach was out we had hope that she would grow out of a lot of her medical conditions. While some have got a lot better, some have increasingly gotten worse. We hit a low point over the last few months of realizing these are lifelong challenges and chronic pain. That is hard to come to terms with. We have hope though. Hope that the Lord can heal. If he chooses not to we know that he has her here for a purpose. She is such a blessing and smiles through the struggles and pain.

03/04/2020

Maddie’s birth defect took us on a less traveled road. There have been a lot of ups and a lot of downs. Thankful for the people we met who we otherwise wouldn’t have known. Thankful for a God who met us each step of the way.

Today is Birth Defect Awareness Day.

Donate to the sickest babies in the NICU who also have the least funding.

Over 400,000 babies born with CDH since 2000.

CDHi is the only charity fighting on the front lines for all these children worldwide. Help us.

Donate at https://cdhawarenessshop.org/products/donate-now

12/10/2019

It’s been a hard few weeks. She had a respiratory virus that she never really recovered from and now flu and pneumonia. We haven’t to stay in the hospital for several years. Hoping it will just be a few days. Thankful for the nurses we get to see that brighten our day.

11/20/2019

This girl has had a rough few months. She had a GI virus on September that lasted for 2 weeks requiring several ER visits and Dr visits. She never really recovered and has continued to struggle. She’s spent a lot of time in pain and nauseous. She amazes me everyday. She gives every day her best and puts a smile on most of the time. She decided to be Wonder Woman for Halloween and that fits her well. She also just turned 10!!! I have a hard time thinking of her as double digits. I still think of her as a little girl. It still brings me to tears to think about how far we’ve come. I am so thankful for those of you that have had an impact on her life over the years. I am incredibly thankful for our support system at school that supports us to do what’s best for her. I’m thankful that God gives us strength each day and one step at a time. 🥳🎂💜

09/23/2019

Almost four weeks into school and already our first visit. I hope and pray this isn’t the way our year is going to go.

09/12/2019

A little late on back to school pictures. She’s loving school and her teacher.