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.

08/11/2019

This past week was another lesson on letting go. Maddie was finally old enough for Cardiac Camp. As we got to camp she saw one of her favorite hospital people and said “I have been waiting my whole life for this.” We took bags of meds and medical equipment and handed it over. Although I knew a lot of these people it was still so hard to let go. I worried she wouldn’t get all of her meds, she would get too tired and too homesick, or aspirate on something thin. She did far better than I imagined. As I got daily updates and pictures from a friend my heart was filled with gratitude. It was obvious she was having a blast and didn’t miss home at all. She made so many friends and was awarded BFF of camp. We had so many leaders come up and say goodbye and how much they enjoyed her. As I walked away to the car I realized when I let go it allows her to fly. A hard lesson but much needed.

07/29/2019

Last week Maddie completed bike camp with iCan Shine. This camp was an amazing experience. It was so fun to watch a group of kids that have both physical and cognitive challenges learn to ride a bike in a week. Some of these kids had so much fear that getting on the bike was a challenge. I was expressing to a friend how it was frustrating we couldn’t teach Maddie to ride a bike. She told me with all of her medical challenges it’s pretty amazing she’s riding a bike at all. I realized she was so right. As I watched her ride I was overcome with so much emotion. Some days I find myself doubting or frustrated she can’t keep up with other kids her age. The biggest take away for me was that sometimes it takes some specialized training, equipment and instructors and a whole lot of cheerleaders to accomplish tasks others learn easily.

06/15/2019

It has been a busy last few weeks finishing up school. So thankful for everybody that made her first full year a success. Looking forward to some down time but also a time for new adventures. When she was born they severed her abdominal muscles on one side to form a diaphragm. This has caused muscle weakness and making things like riding a bike and swimming very difficult. This summer she will be attending bike riding camp. They will have PT’s there to help reach her goal of no training wheels. The other BIG event is Cardiac camp with our amazing Cardiologists and other friend helpers. She has been asking since Kindergarten to go and is finally old enough. Not sure how we are going to do apart from each other for 4 days. It is hard to completely let go and put my trust in others for all of her daily medical needs. It will be a growing experience for sure.

05/21/2019

❤️Buy a balloon at Costco and support our local Children’s Miracle Network and kids like Maddie. A lot of finger licking was going on but the employees didn’t seem to mind. This was our 4th year and I was told emoloyees were asking if she was going to come and visit. I’m thankful for the fun parts of this hard journey and the relationships we have built along the way.

04/15/2019

Dr. McCarthy Maddie’s Pulmonologist pulled her out of school for a few weeks. She hasn’t been able to really get well since Thanksgiving. So what do you do with a bored kid? Schedule all of the appointments we have been putting off like allergy testing. Hoping we can get rid of the Epi Pen😂

03/24/2019

Here we are again in the ER with pneumonia. So frustrating poor girl can’t get healthy. We saw Pulmonology a few weeks ago, and he said the safest option would be to pull her out of school. McCarthy felt she has benefited so much from being in school. Casey and I agreed so we chose to keep her in. Days like today I second guess our decision. She’s all smiles but she’s feeling yucky and cranky. She missed GU’s Dance Marathon which is her favorite event of the year😕. So thankful we have had some good spring weather to enjoy☀️

02/25/2019

This girl has been down most of the week. They thought it was a GI/Respiratory virus. DR sent us back to ER later in the week for lung pain to rule out pneumonia again. ER dr thought was chest wall inflammation since x ray looked good. Her sats and fever are better but shes had really bad leg pain to the point of crying. Tired to have a friend over to play but couldn’t handle it. Back to the dr we go today. Makes my heart hurt to see her cry in pain. This little body has been through so much already. Please keep her in your thoughts and prayers❤️