I recently referenced a good friend of mine who told me of a miracle in her life, and said I hoped I would get permission to share her story. She gave me permission! So what follows are her words.
As many have heard, Baby Walter had a dramatic and scary entry into the world. He wasn’t breathing when he was born and had to be put on a ventilator immediately. He started having seizures shortly after he was born and no one had any idea why. He was put on a cooling protocol to induce hypothermia to prevent any brain damage, and he remained on that for 3 days. He was also on phenobarbital to stop the seizures. During that time, he had a lot of tests done, and they just seemed to create more questions than answers. He has some abnormalities in his brain that might predispose him to seizures, but the issues don’t appear to be so significant that they should be causing him to be completely unresponsive. The doctors suspected a genetic issue that might be affecting his brain’s ability to communicate with his body. Walter had been still and unresponsive and had not made a sound during his first few days, and his doctors were not confident that he would ever wake up. Around day 5 it was time for surgery to place a feeding tube to his stomach. Before doing the surgery, we all had a talk about Walter’s future…we had a serious discussion about withdrawing care and “letting him go.”
During this time, I feel like I shut down. I cried some, but it was all unreal. I prayed for strength and I prayed for acceptance. I never prayed for Walter to get better. I never prayed for him to wake up, and I never prayed for him to heal. I prayed to be able to accept this as the plan that the universe had for our lives and struggled with understanding why poor Walter was even born. When the time came for us to make a decision, we decided to move forward with the surgery. Walter had such a traumatic entry into the world…no one knew why he wasn’t waking up….maybe something would happen as time went on. So, on October 11th, Walter’s 5th full day of life, he had his first major surgery to have a g-tube placed so that he could be fed.
That night, I was so sad. Were we doing the right thing? Were we just prolonging his suffering? What would we do if he never woke up? I messaged back and forth with my dear friend Suzy….she had shared Walter’s story with a group of moms, and some of her faithful friends and she reminded me that so many people were praying for Walter to wake up. We had people all over the country holding baby Walter in their hearts and praying for him to wake up and reach his full potential. I asked my group of mom friends to pray for us too…but still, I didn’t pray for Walter to wake up. I didn’t pray for Walter to be healed. I just prayed to be able to accept what would happen and for our family to make it through whatever was in store. I went upstairs to pump some milk and sat there by myself in silence. I was suddenly overwhelmed by a huge wave of sadness. My poor baby! Why would God do this? Why was this happening? PLEASE SAVE MY BABY! PLEASE SAVE MY BABY! PLEASE LET HIM WAKE UP! PLEASE MAKE HIM BETTER AND LET HIM HAVE A LIFE. PLEASE LET MY LITTLE BOY WAKE UP!! I cried and cried and finally I prayed for Walter to wake up. I begged God to help my baby….I prayed that night with all of my heart and soul. I stayed up there by myself for a little too long, and then finally came down and gathered up my toddler and went to bed.
The next day we got a call from our nurse Laurie to let us know how Walter was doing the morning following his surgery. Her only concern was that he might have some discomfort because he had been squirming a lot and crying some overnight.
He had been squirming. He had been crying some overnight. My little baby, my Walter who had not moved an inch on his own or made a peep in 5 long days…was crying. And squirming. More talk revealed he had opened his eyes and spent some time awake and alert overnight as well. During a time immediately following surgery when most people would be groggy and sleepy and barely wakeful from the anesthesia, MY boy was wakeful, squirmy and CRYING! I couldn’t believe my ears! We rushed to the hospital to see our boy and he actually opened his eyes and looked right at daddy! They enjoyed some time together while Walter was wakeful before he finally fell back asleep. It was the most amazing thing I had ever seen. He was awake! He was MOVING! As Laurie later put it, he had “magically awakened.” It was nothing short of a miracle. My prayers had been answered.
I’ve looked back on that day a lot over the last few weeks. Maybe it was some kind of coincidence. Maybe something about the anesthesia or the discomfort he felt after surgery spurred some kind of reaction in his brain. But the night that I prayed for my baby to wake up, he woke up. Five long days went by, and I never dared to ask for him to wake up. Finally, I broke down and begged for my little boy to wake up, to be healed, to live. And he did.
Walter spends a lot for time awake and active now. He’s not quite like a normal baby, but he is doing a lot and continuing to improve every single day. He is going to face a lot of challenges as he grows that go far beyond the issues with his esophagus. But his life is a miracle, and his spirit is strong. He’s a little fighter and we are blessed to still have him in our lives.
Since that time, our family has taken a lot of strength and encouragement from Walter’s continued improvement. In his 3 short months, he has exceeded everyone’s expectations. The baby boy that the doctors said might never wake up is smiling, and wiggling and winning the hearts of everyone he meets. We are so grateful. He is meant for our little family and we are meant for him. We recently learned about an innovative surgical procedure that will allow Walter’s esophagus to be repaired so much sooner than we ever expected. Learning of this surgery option, discovering that the hospital in Boston is in-network for our insurance, and the unbelievable success of our fundraiser seem like proof to me that we are on the right path with Walter and that God, The Universe, or whatever name you choose to call the higher power is watching out for us and taking care of us every step of the way. This experience has changed me so much. I never knew that so many parents go through this difficult and scary NICU experience. I never knew how much it would help me to know that people in the world were thinking of us and praying for my boy. I also had no idea how much our friends love us all and even when we felt so alone during all of this, our friends and family are thinking of us all the time and just waiting for a way to help.
My friend told me to share her story without feeling obligated to share that she and her husband are trying to raise funds for travel, accommodations, and other expenses related to having their baby in a hospital several states away. I feel no obligation to do so, but I also know that if it were the Goose who had to be far away, I’d be grateful to any who could help. I’ll share the Goose’s story in more detail another day, but she had to be in the NICU several weeks after being born early, and we were grateful to folks who were kind.
So don’t read that as an obligation or a guilt trip, but if you feel like you want to help out my friend and her family, here’s the link.