Big thanks to mom Jamie for sharing this inspirational story of Gage with us.
Gage was born with a Congenital Diaphragmatic Hernia, and a Heart Defect. The Hernia caused damage to his lungs and his heart. His left lung was very small at birth, and his heart had been damaged. He was also born with Pulmonary Hypertension, which is a lung disease.
Gage went through his first surgery at just hours old, as he was placed on an ECMO machine. ECMO is a heart/lung bypass machine, and this essentially was what was keeping Gage alive. ECMO is a very scary machine, with many severe risks that go along with it.
Our little fighter made it through the next 2 weeks, and we were able to wean him off of the bypass machine.
We now had to face another surgery, his hernia repair.
Dr. Lund and his pediatric surgery team came to Gages room and performed the repair surgery right at the bedside. This was a very long 7 hours of waiting outside the room. Since Gage had been born, we had never left the room, so this was hard for us. But from the first moment we met the staff in the PICU and the rest of the teams, we knew that Gage was in the best care, and I never had a worry or doubt in my mind about leaving him with them.
Once again, our tough guy pulled through surgery just fine, and we sighed a breath of relief thinking this was the beginning of our path to home!
The life with a child in a hospital is like an emotional rollercoaster. It has many wonderful UPS, and then just as many, difficult DOWNS.
Gage was still intubated (on the ventilator) and became sick. We were praying he had not caught an infection from one of his IV's, or a virus. His lungs were still so sick, that a virus could easily be fatal for him. All cultures came back negative, and it was found that as a side effect from the ECMO, Gages Gallbladder was damaged, and would need to be removed. So in for his 3rd surgery at only a couple months old, Gage fought like a champ, and came through it all just fine.
On May 7th, our little guy was extubated and took his first breath on his own at 8 weeks old.
He was able to stay off of the ventilator, and be on just high flow nasal canula oxygen. We were so proud of him!!
Now all we had to do was gain some weight, get a little stronger, and we would be on our way home with him..
Well the months ahead brought on many wonderful memories, but many heartbreaking days also. It was months full of re-intubations, surgeries, multiple ivs, meds, and many days of wondering was it our last with our sweet baby.
Gage just never could catch a break. We were able to bring him home July 8th for the first time at the age of 4 1/2 months old, but shortly after, had to rehospitalize him for failure to thrive (poor weight gain) and heart issues.
Gage had his first heart surgery, and once again, had no complications through it. He was always so strong, fighting with every ounce of strength that he had. And we were always just as determined, fighting just as hard for him.
We were able to bring him home a couple more times throughout the year, but always ended up back in the PICU, with our baby being intubated multiple times. Gage had open heart surgery in November of 2009. We were so proud of how quickly he recovered from such a major surgery. This was his 8th surgery! We celebrated Christmas at home with our amazing little miracle, and his 5 yr old sister, and we will be forever grateful for that opportunity to have him home. On January 22nd Gage woke up with a fever and respiratory distress, and we brought him to our local ER. One of the PICU doctors and nurse(Dr.Benson and Andy) came to Oshkosh in the ambulance because the Med-Flight couldn’t fly due to bad weather, to pick Gage up because they knew him the best, to try to save our baby’s life, as he was having a Pulmonary Hypertension Crisis Episode. His blood vessels in his lungs were clamping down, thus not allowing oxygenated blood to flow to the rest of his body. Gage went into cardiac arrest that evening, and the PICU team knew how tough Gage was, and fought so hard for him to bring him back. A miracle happened, and after 5 minutes of having no pulse, our fighter, came back. We were told by the doctor that he had never seen anyone come back from that, and that once again Gage has proved what a miracle child he is.
We were able to spend 4 more days with our precious son thanks to the amazing PICU team, and the fighting spirit of Gage.
On January 26th, 2010, Gage Michael Johannes became an Angel at the precious age of 10 1/2 months. I know that Gage never gave up, and we never gave up on him either. His body was just too weak. We are so thankful that he held on long enough for us all to say goodbye to him, and for us to have those last days to find comfort and peace in what was happening, knowing that our baby was ready to be with the Lord.
If you were to ask any of the PICU staff or the teams throughout the hospital, they would tell you what a miracle Gage was. He amazed everyone who knew him, and even those who hadn’t met him. Odds were stacked against him from birth, and he fought with strong determination. Our sweet Gage came to teach, and in the 10 1/2 months we were blessed to have him, he taught so much. He taught us all about appreciation for life, how to never give up, how all the medicine in the world isn’t as powerful as love, and to always believe. Gage loved his doctors and nurses. They were his family, Our little Angel was always so happy, always smiling and his sticking his tongue out at you. He enjoyed every minute of his life despite everything he had to go through. For 10 1/2 months the PICU was his home. Our home. And it’s because of the wonderful nurses and doctors that Gage was able to enjoy his life so much. Gage was so innocent, his spirit so strong. He touched the hearts of so many, and he will be forever loved and always missed. He is our PICU Guardian Angel.
We had to live at the hospital for almost a year, 2 hours away from our home, with our 5 year old daughter. Our daughter soon became very attached to the hospital and the staff. The nurses were her dear friends, and she caught on very quickly to what meds and procedures Gage needed. She was always a good helper with the Nurses. Tyler’s place was a true blessing, Pet Pals was always something to look forward to! Along with the family meals, and the many activities Child Life schedules and puts on. The Ronald McDonald house is wonderful!! The staff at AFCH are so special to us, and no longer being at the hospital will in itself, feel like a hole in our hearts. Everyone makes sure to do their best to ease some of the heartache that you are experiencing. We spent every holiday except Christmas of 2009 in the hospital, and it was just as special as if we were at home for the holidays. I could never say enough good things about AFCH. We enjoyed having it as our home. We have made many lasting friendships. We truly love AFCH and will be forever Grateful for the amazing, dedicated staff. Dr.Lund and the Pediatric Surgery Team, Dr.Hokinson and the Cardiology team, Dr.Hennein and the Pediatric Cardiac Surgery team, the GI team, Pulmonology. Our PICU doctors and Residents, Dr.Benson and Dr.Brazelton, Dr.Wilhelm, Dr.Eldridge, and the many more Attending Physicians in the PICU. We keep hearing from so many that you never hear of a Doctor and nurse coming to another hospital 2 hours away to pick up a patient. I know they did this because Gage was so special to them. They treat every child as if they were their own. All of the Respitory Therapists. Our PICU nurses (Gages many moms) Kate, Sam, Kelly, Meghan, Emily, Andy, Jess, Karen, Pat Sheryl, Susan, and many more.. you are all the reason why we were able to spend so long with our little baby boy, who quickly became such a big boy! We will always hold you close in our hearts!
We are so proud to carry on Gages memory in fundraisers and a program in the PICU to always have toys for all the patients, so that they can have a smile on their face in such a difficult time, just like our little Gagey always had a smile on his.
I remember the radio-thon in May of 2009, and we were in the PICU and we had the radio on, listening to the families share their story, and I remember how much it touched me to hear the stories of survival, and of those that ended in heartbreak. I told myself that day that the next year I will tell Gages story, of being a CDH survivor. Well God had a different plan for our Gage, and now I want just as much to tell Gages story of survival for 10 1/2 months despite all odds, and let everyone know just how AMAZING AFCH really truly is.
AFCH will continue to be in our lives, and we will keep Gagey’s memory alive.
Our prayers and thoughts are with all the families who have a little one in the hospital, we understand just how hard it is, emotionally and physically. We hope you can all find the strength you need to get through the tough times. Our kids are stronger then most think, they can pull through anything! God bless,
Jamie Appleton, Josh Johannes and Alexis. Gages Mama, Daddy and Sissy.
I have attached a couple pictures of Gage, I wasnt sure what to choose, since I have hundreds of photos of him. These two are some favorites though. If you want to just choose the one of him, that is fine also. He was always a happy smiling little guy. I read the story about Gage, makes me miss the hospital and all of the wonderful memories we made there. We loved the family meal program, always looked forward to it, knowing that was one less meal we had to worry about for our daughter and us, as we never liked leaving Gage's room for long. The family lounge came in very handy when we had family visit, and especially those last few days with Gage, we had family camped out everywhere for days. I more than appreciate what you have been doing, and just know that every family on the 4th floor appreciates it also!!