Lessons on Faith

I will admit it, I am a bit of a control freak. One of Lane's nurses phrased it slightly more politely than that a few weeks ago when she said, "Well, I just wanted to ask because I know you are particular." 😀 Having children in general has shown me how little control that I actually have. Having Lane has showed me that I am not in control...like ever.

When Lane entered this world he was blue. Panic instantly flooded my body. He was making a strange sound with each breath. (We now know it was a stridor.) At the time, we thought it was just him adjusting to breathing in his new surroundings. They set him on my stomach and wiped him off in preparation for skin-to-skin. As they wiped him off, his whole little body went limp. One nurse with a fixed smile sweetly said, "I am just going to take him over here for a minute." I could see the worry in her eyes. She rushed him over to another nurse where they quickly worked to check his vitals. I was stuck in the bed across the room. I felt helpless and scared. My husband, Lance, had his hands on his head pacing around the room. My OB was trying to comfort me. Saying these this happen and "You'll know when to panic." It was right after she said those words that the nurses started chest compressions on Lane and the NICU panic button was pushed. An alarm went off and a team of doctors and nurses charged into the delivery room. They wheeled my baby boy out of the room. I hadn't gotten to hold him. I hadn't even really gotten to see him up close. I was left in the room with one other nurse for an hour to recover. I was crushed. I had to have faith that the doctors and nurses knew what to do and that God would take care of Lane. Thankfully, my best friend works at the same hospital. She ran down to my room as soon as she heard. She held my hand as I cried. That became her second job for the following 9 weeks while I made the NICU my second home.

My mom and dad visit Lane for the first time.

Every day in the NICU was a roller coaster. Things seemed to changed constantly and yet stay the same all at once. 9 weeks of maternity leave spent at the hospital. I would get up, take Avery to the babysitter's, and go to the hospital like I was going to work. Lance would go to work and come to the hospital after work. I would leave and pick up Avery to take her home for dinner and bed. Some nights one of us would go back to the hospital after dinner. When I wasn't at the hospital I had to have faith that these strangers would take care of Lane. It was awful. I felt like I needed to stay there all of the time, but I also had a two-year-old and a husband. I am so grateful for the nurses, doctors and specialists that took time to help take care of Lane. I know it wasn't easy to put up with Lance and I sometimes.

Lane's home for his first 9 weeks of life.

Lane a few days old. Swollen from birth and fluids.

For every medical procedure and suggestion, Lance and I have to use discernment and have faith that we are being led in the right direction. We typically second guess ourselves and sometimes disagree on what we should do to best help Lane. Every decision seems crucial and comes with so many uncertainties. Faith has pushed me through many doors that I was afraid to open.

We thought we were going to be taking Lane home from the hospital when he was about 3 weeks old. He had been eating relatively well and making gains in every area. Then, we were told he needed to be gaining weight consecutively for three days before being discharged. It was then discovered that Lane and I both had thrush. Some of the staff thought maybe he wasn't eating his bottles very well because he was in pain. They decided to give him morphine. Seems like a reasonable decision, until you think about how his vocal cords are already in a closed position. The morphine relaxed them even more and his oxygen levels tanked. It was the day that I refer to as "the perfect storm." I suppose I should start calling it the "most horrible, terrible, poop-storm ever imaginable." That's far too long of a title though. After his oxygen tanked they rolled in equipment we hadn't seen in his room for weeks. He was put on oxygen and sedated. He virtually spent 3 days in a coma and the medical staff was starting to have more conversations about Lane needing a trach. Ugh. Our worst fear. We decided to do the surgery when Lane was 4 1/2 weeks old. I keep having to renew my faith that we made the right decision for Lane when it comes to the trach. We have hope and pray he won't need to have the trach for much longer. A trip to Cincinnati Children's Hospital this June will hopefully provide more insight about that.

Lane after his tracheotomy, 4 1/2 weeks old.

Lane at 6 months.

So much has changed since Lane has been born. I have to have faith that God has a plan. I have to. Otherwise, I would just completely succumb to anger and depression. Since Lane arrived we have moved twice, my work world crumbled, my 2 year old stays home with me now, and some relationships have changed.  When we were sent home with Lane with virtually no help, it wasn't just his intensive care that was stressful. It was the world that we once knew fell apart around us. It has been a grieving process. We are slowly starting to pick up what pieces are salvageable to eventually put them back into place. There are still a lot of unknowns for Lane and our family. Like, could someone please give me a number of someone who know what they are talking about with Medicaid and Social Security? Seriously! (That's a whole other blog topic!)😨  We are taking things one day at a time. That's what we have to do. We also have to keep the faith that one day we will look back at this time in our lives and it'll be known as "the time we didn't think we'd live through."