Originally posted May 2018
Grab some tissues my friends! You are in for a treat today. I hope you enjoy my friend Mary’s amazing story of her little warrior.
““We think you should pull the plugs.” I sat on the couch looking at the phone receiver in my trembling hand and thought, “Did I really just hear her say that?” I knew I needed to formulate some sort of response and finish the conversation, but I was in shock hearing these words uttered by my close childhood friend.
We were only about 3-4 weeks into the most difficult thing we had ever been through. It was a challenge for our family in many aspects, the hardest being physically and spiritually. We had a 13 week premature baby in the Newborn Intensive Care Unit (NICU) at Primary Children’s Medical Center and we were in for a bumpy ride. One of those rides that when you get to the top and start heading down, the wind whips your hair and the ride pulls you to the left, the right, and to the left again, jerking you relentlessly. All while in the dark. That’s where we were, wondering what direction we would be going next, not knowing if we were making any progress. Not knowing if we were heading up the hill, or at a low point down in the valley. And now to hear that other people were trying to “help” make decisions for us was more than I thought I could take. They made these decision without even knowing the details, yet, they gave us their point of view.
On September 30, 1993 I was at home preparing dinner for my two children while speaking on the phone with my husband. He was working late and was just checking in with me. All of a sudden I felt like my water broke. Looking down, expecting to see a clear liquid, I was startled to see blood pooling at my feet. I hung up from my husband so he could race home. Having taught first aid classes for many years I knew exactly what to do next; I called my father. Now you’re thinking, “Why would she call her dad?” He was a retired paramedic. I explained to him what was going on and his response was, “Oh honey, here’s your mom.” I was confused because this was uncharacteristic for him to respond in this way. What I didn’t know at the time was, while my mom was calmly walking me through what my next steps should be, he was dispatching 911 to my house from his cellphone.
Because my parents lived 45 minutes away and no neighbors were home, the plan was to put the kids in the ambulance with me until my parents could get to the hospital. I remembered at this point that I had a brother and sister-in-law that lived a mile away. I called them to come for the kids. I then gathered my kids, purse, and keys and walked down the stairs to the front door. I walked outside, locked the door, and sat down with the kids on the front step. I was explaining to my terrified 4 year-old, and her 2 ½ year-old brother, that Mommy was feeling like she was going to lay down and take a nap. At this point I was feeling very faint from the loss of blood, but I went on to tell them that people were coming to help me and that Aunt Darlene would be there to take them home for a sleepover.
The paramedics drove up just as I finished, and my sister-in-law arrived just seconds later. The most vivid memory I have of this moment is the look on my kids’ faces: The oldest with her wide eyes that kept getting bigger and bigger as she was gradually walking further and further away from me and closer to the road. My 2 ½ year-old stood in his tan, corduroy, OshKosh overalls, holding on to the Indian statue that his great grandpa had carved for him. I remember pleading with my sister-in-law to take them away so they wouldn’t be more frightened than they already were. She did so, hugging me and telling me everything would be okay.
My husband drove up, just in time to walk in to the house, call his parents, and ride with me to the hospital. When he exited the house, he was white as a ghost, because he had seen my bloody footprints up and down the halls. All the way to the hospital I just kept thinking about how this had happened in the middle of my dinner preparation and I was worried about the kids going hungry. Looking back I think this was one of the things that got me through the moment, because I was not thinking about the dire circumstances the baby and I were in.
Once at the hospital, the doctor was hopeful that we wouldn’t be having a baby that night. However, hope turned to uneasiness as my contractions continually became worse, and the baby’s heartbeat continually dropped. It was soon evident that yes, in spite of efforts to prolong the pregnancy, we would be having our third baby that night. Because the baby’s heartbeat was no longer detectable, the staff immediately unplugged the bed from the wall, and ran down the hall pushing the bed to the C-Section room. The skilled staff had me completely unconscious, and the baby delivered, in about 5 minutes from the time we entered the room.
I remember waking to see my family gathered around my hospital bed. I felt disoriented and very cold. A few minutes later, the Life-Flight team wheeled an incubator into my room so I could see my son before he would be flown to Primary Children’s where he would stay for 3 ½ months. I reached out to touch my baby, but my hand met with cool plastic instead. I stared inside at this perfectly formed 2 lbs. 5 oz. bright pink and yellow baby boy. The next time I would see him would be 2 days later when I was released from the hospital. We named him Jake.
The nurses warned my husband that the first time I would get to see my baby in the NICU, it would be a difficult encounter. This held true. Reality can smack you in the face and it can be difficult to hear what it has to say.
For us, it meant that our “Baby Jake”, as the hospital staff called him, was facing some very difficult challenges. His lungs were underdeveloped and the ventilator that was saving his life, was also damaging his lungs. His heart needed surgery and the medications he was being given for his lungs were making his sick heart work too hard. This resulted in high blood pressure. We truly began to know why it is called “the practice of medicine.” They practice with procedures and medications until hopefully they get it right. The treatment for one thing leads to another problem arising, which requires that issue needing treatment only to find another thing has gone awry. This vicious cycle continues until you are back to where you started in the first place because the dog chases his tail.
It soon became apparent that Jake had multiple issues facing him. And so we began the roller coaster ride. Countless prayers later, we realized what a miracle all children are, but Jake’s miracle got to be viewed outside the womb. While Jake’s progress was slow, it was hopeful. Never had the doctors verbally indicated that we had a choice to make in his behalf. Instead, we were told several times they were concerned that he needed more time between the ups and the downs to get stronger. Even though at six weeks old he was given only a 2% chance of living, there was still hope and our faith was edified and strengthened daily by our loving Heavenly Father and the promises of the plan of salvation.
The incredible thing about all of the experiences we had with Jake, is that he taught us things every chance he could. Patience, service, faith, love for fellow men, and gratitude. It doesn’t take long to feel blessed when you spend time in a NICU and you can see what other people are facing. We honestly felt grateful for the experience because of what we learned about ourselves. We learned that we were strong. That trials build character and that good things can come from them. We were able to help others see this too.
One of the greatest things we learned is that we did not have to go through this alone. It’s not easy to rely on others and we had to a lot, even for the most mundane things like, laundry, house cleaning, groceries, meals, and babysitting. We also came to a place in our spirituality that required great faith. Faith in our God, in the many care-givers abilities, and in our little warrior. He fought valiantly and became a symbol of hope for all of us early on. Perhaps the miracle was what happened to us. How we grew as a family, pulling together instead of apart.
I will never forget sitting in the social worker’s office in the hospital. My husband and I sat clinging to each other. The social worker looked back and forth several times between my husband and me. With curiosity on her face, she asked us, “How are you staying so strong? Normally, this pulls families apart.”
We were given the opportunity to serve other families going through difficult times. We were able to sit with them and listen to their fears. Knowing that we were in their shoes gave them the chance to really open up to someone and feel a connection. We were kind of the “old kids” on the block by the time Jake was able to come home. We were able to touch many lives, and many lives, in turn, touched ours. So our miracle reached immediate and extended family, the nurses and staff that became like family (some even coming to Thanksgiving dinner), friends we had before this experience, friends we made during this experience, our church and community groups.
Going back to my initial paragraph, I put the receiver back to my ear and heard the last bit of her comment, “the cost could be outrageous and you don’t know what the future will hold for him.” Speaking more calmly than I felt, my reply was, “Come to Primary Children’s with me tomorrow. I want you to meet him.”
Tomorrow came, and as agreed, we met in the lobby and walked those long halls together. Primary Children’s does a good job at catering to the children. The decorations and colors they use do alleviate some fear, but there is no real way of masking a hospital’s “sterile smells.” We made our way to the “scrub” room where all NICU visitors must “scrub-up” very much like the doctor’s do on any hospital show you see on TV. Your hands become cracked and dry with repeating this so often.
We entered the NICU and walked to Jake’s isolette. My friend watched him for a few minutes taking in all the monitors, tubes, alarms, and the explanations we gave her. With tears in her eyes, she looked at me and said, “I understand.” She confirmed in herself what everyone saw in Jake. The miracle of hope and faith. It had gotten us to this point and would carry us through to whatever end was awaiting us.
Jake is now a funny, delightful 24 year old man who is involved with his YSA ward where he holds a calling and loves to go to FHE. He has done much volunteering with several companies including a local elementary school where the kids read to him for a few hours a week. I reflect back at the many ups and downs and trials we faced. I feel nothing but gratitude for the lessons learned. Faith in a higher being, in my fellow man, and in the will to live that my little warrior was born with. Patience to endure the hard things, to be willing to wait, and to hope even when things don’t go the way you expect. Gratitude for what you do have even when things look bleak and frightening. Peace to know that all is well even though we didn’t know what that meant for him then, and even wonder sometimes now. That service is a wonderful way to lose yourself and to remember that there are others who need hope and help as much or even more than you do.
I don’t look back at this time and wish for it not to have happened. Yes, If could have taken away his pain and fear, I would have done it in a second. But wishing that it never happened would also wish away other aspects of my life that made me the person I am today. I thank my Jake often for allowing me to have this mortal experience and for his willingness to help us grow. Truly a blessing for our family!
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