The following morning I was able to go see Eric.
I wasn’t in too much pain, and was more than ready to see my son. There were no fancy cell phones, no FaceTime, no way of instantly knowing how Eric was doing. When I entered the NICU, I immediately felt the severity of Eric’s health and feelings of defeat washed over me, but in a matter of moments, I had this intense focus, a mission, a purpose. My life had shifted. It had new meaning. There was a “being” larger than myself going to work inside me and I couldn’t explain it at the time. I just knew I was not the one in control, and I allowed my heart, soul, and intuition to take over.
Wires weaving everywhere, over and around, lights flashing,
beeping sounds, and there he was, my sweet baby boy, fighting.
If you saw him without all the wires, he looked like a normal, healthy baby. He was just under 7 pounds and 19 inches long. His tiny body was clothed, not in an adorable onesie, but in wires, and we were not preparing to welcome him home, we were preparing to face an uphill battle and a fight for his life.
One of the first things I noticed, as a few days went by, was that Eric’s face was puffy from the fluids he was being given. He was connected to the ECMO machine and big, thick wires were coming out of his neck. It all took me aback for a moment and I just stood there, gazing down at my sweet baby boy. How could this have happened? How was it that I was standing in this room, with my baby connected to everything under the sun, and I can’t even hold him? How? It would take a while for me to find the answers, and I eventually would find some meaning to this unimaginable experience. For now, I comforted him, I cried, and I told him that I was so proud of him. I hugged him the best I could, and vowed right there to be the best mommy ever for as long as he was with us.
I was in the hospital for four days, being discharged on Sunday, which was Mother’s Day. I was able to spend that day with my two children, Alex and Eric, and I was elated. It was bittersweet, but, I was blessed and grateful to see my two children together for the first time. As much as I struggled to have hope this would happen again, I enjoyed the day, because deep down, my gut told me this would be the last Mother’s Day I would be able to spend with my two children.
Steve and I were staying at the Ronald McDonald House next door to the hospital. We had it timed out that from the moment we left our room, it took us about 12 minutes to get to Eric’s bedside. We could spend every minute with Eric is we chose, but of course, we knew we needed our rest and have time together, too. The place was very welcoming and comfortable. (The house is in a different location now)
There was a common living/kitchen area for the guests and we had a small bedroom with a bathroom. There were two beds - not quite single beds, but not as large as a double. Maybe they were super single beds. A small dresser sat against the wall across from the beds and there was a small table near the window. Next to the bathroom door there was a small table/counter with a microwave. We were able to keep our main food in the kitchen and prepare our food just like if we were at home. Our food was kept in “our” cupboard area with our names on it, and anything in the refrigerator had our names on it. Very often volunteers would bring in food for all the guests. Many times we would return from the hospital only to find a complete lunch or dinner waiting for us. They also had a nice outside area with picnic tables, toys for the kids, and a seating area with beautiful landscaping. There was a play area inside for kids, too.
Alex was not staying with us, but Ivonna brought her down a few times to visit, and they even stayed the night once. It was best for her to keep as normal a life as possible given the circumstances. She was in kindergarten for a half day and then day care of the other half. Ivonna was our angel and made that happen. She stayed at our house and kept Alex’s life running like a well-oiled machine. I cannot thank her enough, and the weight that she took off my shoulders during this time, was priceless.
For the next couple of days, there was talk about a surgery to close the hole in Eric’s diaphragm, and this was the first glimpse of hope we had that he just might be able to pull through. This was going to be a major surgery for our little man, and the only thing to do was wait. On May 12, 2003, Eric had a two-hour surgery to close the hole. The surgery went well and although he was very swollen from the surgery, he was stable. We weren’t sure if this was going to make an impact on helping his heart and lungs recover and rebuild, but it was necessary to have done.
Ivonna brought Alex down to visit us for the afternoon the day after Eric's surgery. Alex was excited to see Eric and brought him a card saying that he was “the very best brother”. Later that evening Eric began to move a bit—his fingers, feet, and even his mouth. And much to our surprise he opened his right eye for a quick second. He tried and tried and we could see his eyelids moving up and down, and then his eye opened! It was so exciting and encouraging.
Eric was five days old now. Five days into the fight for his life. Five days into my life, as a mother of two. Our new normal was waking in the morning, cleaning ourselves up, and walking over to Eric’s room by 8am or so each morning. The nurses would greet us and we would get statistics on how he was doing. We spent most of the day by his side, and even though I was still recovering from a c-section, I barely felt any pain. The only pain I felt was in my heart and soul.
At one week old, Eric continued to demonstrate his strength and bravery and he inspired us every day to do the same. This was not only his battle, but it was our war, and we were going to fight until the very end for him. I had moments of breakdowns, but for the most part, I had an intense focus every day when I awoke. Witnessing my little man's strength and determination was enough to kick my right out of most breakdowns. There was no time to stay stuck in the mental hole of "woe is me" and "why". There was only time to make sure we keep our spirits high and had as much positive energy flowing as possible... since we are energetic beings. I didn't realize the impact this realization would have on my life until years later.
Eric would have times of a “trial off” of the ECMO. This is where they clipped the tubes leading into his neck so the ECMO was not helping him pump blood through his body. He was still hooked up to the ventilator but Eric did all the work of pumping blood, for as long as he could—up to 20 minutes. The first time they did this, he lasted the entire 20 minutes but his CO2 levels were high, which meant his lungs were not expelling CO2 at a fast enough rate. I was not really a "numbers person", however, we learned very quickly how important numbers are in the care and well-being of your child fighting for his life.
Every day there were ups and downs, and some days the ups and downs were so extreme. We would get a glimmer of hope because a test or a stat might be better than the day before, and then we were shot back down again with the realization of the dire situation we were in. Being hopeful and surrendering, is about all you have in a situation like this. All you can do is walk in faith that this is out of your hands and God is guiding the way.
This is copied from our documentation at the time.
Eric looks a little more awake this morning. We arrive to say good morning at about 9:00 AM and wait for his 2nd “trial off” to begin. Jeff comes in about 10:00 and looks at the chest x-rays from the morning and says they look better. His right lung has expanded slightly and that is a good thing. This was the lung that was not directly effected by the hernia, but was still smaller than normal. Eric didn’t do as well today with the “trial off” but we are okay with that. Jeff tells us that we are going to have days like this, and we are not discouraged in the least.
He is such a fighter and will continue to fight the good fight! We will wait and see how he does tomorrow. He looks so cute laying there and continues to move his fingers, feet, and mouth. And the greatest thing happened today… Eric managed to open BOTH eyes for a second!!! He opened the right eye a few times, but the left eye had been “stuck” shut and he finally got that one to open too! It was a beautiful sight!! We are hoping to catch it on camera soon, but he can only keep them open for a second. Thank you all for the prayers and support. We know they are working miracles on him and he will be able to come home with us soon!
More to come very soon... thank you so much for reading.