Caleb - Connecticut

Caleb - Connecticut

May 29, 2012 will be a day I will never forget. I remember every single detail all too well as if it happened yesterday. It was a dark and stormy spring night. Thunderstorms were happening all over the state as if the thunder was going to help me deliver my baby boy. I remember the maternity ward being full and expectant families were all over; awaiting their own joyous addition to the family. My contractions were getting stronger and with every strong wave of pain I was experiencing, my baby's heart rate would drop tremendously. I had no choice but to start to deliver and within minutes {thankfully}, I was given a beautiful five-pound, three-ounce baby boy. The emotions were real – the feeling of relief that I didn’t have to have an emergency c-section, the overwhelmingness of labor came over me and I became such at peace when they swaddled my cute, pink-cheeked baby boy and placed him in my arms. I remember that sweet, sweet baby smell that you can’t find in any candle, no matter how hard you try. Caleb made my life complete; I now have my boy and I have a vibrant, blonde hair and blue eyed two-year-old girl. Life couldn’t be sweeter.

The nurse gave Caleb a bath and then noticed a bunch of red spots all over his peanut-sized body. To ensure everything was going to be okay, I agreed to let them take him into the nursery for observation overnight. They kept telling me that there was nothing to worry about; that I should just take this time to rest before my life with two kiddos becomes real the next day. My anxious thoughts were going wild though. Why is he going for observation? Why can’t they just watch him while he stays with me? What are they not telling me? I watched the nurses take him away for the night, I felt a little piece of my heart go with him. I closed my eyes and if I could go back in time, I wish that I would be more prepared for what the next day was going to bring.

I woke up the next morning excited to hold my baby again! What came next however was a total shock, I wish I had a warning like a cowbell because what the nurse said and how she said it was so nonchalant, without a care in the world on how it was going to affect me. All I heard was muffled noise, I couldn’t seem to understand the words. I was in total denial.

Caleb was sick. He couldn’t breathe on his own, he had masses on his brain, his liver function was failing, and his white blood count was drastically low, which I knew meant he was fighting off some sort of infection. The doctors were working frantically to figure it out and decided to transport him to a different NICU. I couldn’t kiss him goodbye, hold him one last time, breathe in that sweet scent of newborn; I just had to stand in the hallway of a dark, cold, hospital and wave goodbye. Tears were pouring down my face and at that moment I lost it.

I had a million thoughts going through my mind on the drive to the other hospital. Nothing, I mean absolutely nothing, could prepare me for what was going to take place. I was shaking, but like a stone. I had to be. Caleb needed me to be present and I needed to understand what was happening.

My mother and I arrived at the new NICU. Caleb was in isolation, I had to gown up, with gloves and a mask and shoe covers. I didn’t like this new land I had to venture into. I had such high hopes that this was all such a big misunderstanding.

I was told that they would have to run a series of tests, ranging from a spinal tap to an MRI. I was going to be tested as well. They practically dragged me out of the room during these tests because they thought it was for the best that I didn’t watch. I ran out of the NICU and went downstairs to the first level, found a corner that no one was using, and sat there and cried. I cried so hard that it hurt.

I headed home leaving Caleb with the NICU team for the night, and thankfully my family friend had my daughter that whole week so I could focus on my son, but I went home to an empty house. I was supposed to be home with my two-year-old and my newborn son. I would have given anything to trade what was happening.

I had an unusual strange peace in my heart as my mom and I made our way to the hospital the next  morning. I arrived in my sons’ room, all gowned up and masked and robed and I was sitting bedside with him, as he laid in his protective incubator. The doctor made his rounds in the morning as he usually does, and Caleb was the last one he saw. The moment he came in and closed the door and asked me to sit down, I knew I was in for something. Once again, a new territory.

Caleb was diagnosed with a virus called, Cytomegalovirus, CMV for short. I had never heard of this virus or disease before. Caleb’s prognosis was heart-wrenching. I was told he wouldn’t be able to walk, talk, see or hear. That my son could be wheelchair-bound; that he could be in a vegetable-like state.

I froze. I paused. I panicked. But I didn’t cry. I couldn’t cry, not one single tear. My body wouldn’t let me. I thought of all the possibilities that could happen. What my life could look like; how changed it was going to be from here on out. I was told that they didn’t know what his chances of success were going to be, that we must take it day by day. Hour by hour. Pray for the best and be prepared for the worst. 

How in the world does one take that news? How does one just go about the rest of their day, after hearing news like that? Caleb started on anti-viral therapy to try to stop the progression of the disease on his brain and he needed it for two more months. I had him transported to another NICU, which was much closer to my house. The last two months were routine for me. Bringing my daughter to school and then spending my day with my son at the hospital, saying goodbye, picking up my daughter and being a mom at home, while 95% of my heart was still at the NICU. While difficult, I was soaking up the fact that my son was alive and healthy enough to see every day.
I was able to bring my son home on July 13th. I was so nervous, excited, frightened and relieved. Life became a bunch of doctor appointments, endless birth to three therapies at the house, surgeries, very little sleep and endless amounts of coffee. My life was forever changed when Caleb came home, but I wouldn’t have changed it for the world.

Caleb is now a thriving seven-year-old. He wears a cochlear implant on his left side and a hearing aid on his right. He wears braces on his legs because he’s been diagnosed with cerebral palsy, so his muscles are weak, and he tends to bend his feet inwards. His feeding has come a long way; he now loves pasta and tacos. He was non-verbal for almost three years of his life, now he is fluent in sign language. Caleb loves to run; he had to use a walker for three years and then one day, he started taking steps and just took off from there. I reference it to when Forrest Gump was running and his braces fell off his legs! That’s my Caleb, 100%.

He is a miracle. A literal miracle. I can’t even begin to put into words how overwhelmingly blessed I am. Being a special needs mom is something I am proud to be because it means I can connect with other moms who have been through something traumatic and I can try to help them find the silver lining.

-- Shared by his mother, Rebecca