Part II: A NICU Infant at Home – One Father’s Story
As excited as we were to take Koby home and out of the NICU, we missed our nurses. Not only because they were good at what they do and helped keep Koby safe and alive, but they also brought my wife and me so much comfort. Having them available to talk to and encourage us was vital. At first, it was difficult without them and we felt a little extra weight on our shoulders as the reality of caring for Koby on our own set in. Having a child with special needs creates many unique challenges as parents. It was such a relief to have our ProgenyHealth Nurse Case Manager, Melissa, there as a resource to navigate any medical issues that popped up. We were able to focus on Koby and our other children, knowing Melissa would help us quickly address anything we needed. Her assistance was well timed and brought us tremendous relief.
During Koby’s first night home, he reminded us right away that he was a newborn and woke both of us up throughout the night. Not that we were complaining, it was a good problem to have after what transpired after his birth. Having Koby home after five weeks in the NICU was wonderful. The days were (and still are) very busy; we fed him through his G-tube around the clock, he had frequent therapy sessions, and required a lot of extra care. His siblings wanted to hold him every second and they traded off taking turns the entire day. Add to the equation that we had five other children to take care of, and our stress level remained at an all-time high. This was all very overwhelming, but the best advice we received was to take things one day at a time.
When we left the NICU, the doctors reminded us that Koby is small and has some catching up to do. He had to spend much of his first month of life healing from the trauma of his birth, so many of his other functions like eating and gaining weight were kept to a minimum. All his jitters and shaking, which improved and became less frequent when we brought him home, caused him to burn more calories than the average newborn which created another obstacle for him to gain weight.
At seven weeks, Koby was officially diagnosed with cerebral palsy (CP). I will be honest, when we heard this news officially, we were doing our very best to stay positive and handle everything with a grateful heart. I believed very early on that Koby would have something like CP. I remember coming home from the hospital 48 hours after his birth; I had faith that everything would be OK, and I felt a tremendous peace throughout. We were just hoping and praying that he would survive, and we would be happy no matter how things turned out, so this news was not discouraging to us.
Then at eleven weeks, the doctor told us Koby has moderate to severe hearing loss. They had to turn up the volume to 70 decibels for him to hear sounds that most of us can easily hear at 20 decibels or less. Koby is not considered deaf, but things will be difficult and require a lot more work for him. This was a shock to both of us. Shortly after he was born the doctors told us that he is at risk for hearing and vision problems. His brain went through a lot of trauma, and we just weren’t sure of the damage. I know now that in life you must prepare for anything. The first day Koby wore his hearing aids he was so much more alert. It was so sweet to hear him begin to vocalize. He first started making strange throaty noises, then he made a couple pleasant sighs and I couldn’t help but tear up. We hadn’t heard him make any sounds other than crying or coughing; his voice was so sweet to hear.
Our five other children have such great attitudes and we can learn so much from their perspective. We told the kids of Koby’s hearing test and Kyle (7) said he wants to be the one to teach Koby how to hear. Then the other four jumped in and said they will teach him how to communicate too. Kamden (4) said he wants to be the one to teach him to go potty in the toilet, and Krew (almost 3) said he is going to teach him to walk. Their attitude is clear: we will just have to do our part to teach him whatever doesn’t come naturally to Koby. They won’t accept the idea that he “can’t” do anything. Sometimes our kids are the teachers and Sharalee and I are the students!
Koby continues to eat through a G-Tube. It’s so unnatural to feed your sweet baby through a tube, especially when you want to hold them close and comfort them. We fed him through a pump most of the time and mixed in a few gravity feeds each day to give his tummy a more realistic feeling to eating a meal. A gravity feed fills his tummy quickly much like the feeling he’d get if he were to drink from a bottle or nurse. His spitting up became much less frequent and we attributed this to his medicine since he still showed signs of reflux. He had feeding therapy to try and teach him to eat with his mouth. At nine months, Koby had gained enough weight so we could FINALLY skip his midnight feed.
Through many miracles during his first year, Koby made slow, but steady progress. Koby had his first ambulance ride at two hours old, first faint cry at three weeks, first surgery at four weeks, first time meeting his brothers and sisters at five weeks, first smile at seventeen weeks, first time hearing with the use of his hearing aids at four months, first time tracking with his eyes at five months, first airplane ride at five and a half months, first giggle at six months, rolled over for the first time at eight months, slept through the night for the first time at nine months (hallelujah for that!), began grabbing for objects at ten months, and continues to make strides every day. His timeline for crawling, eating, talking, walking, singing, and doing other things will be based on his own unique schedule. We are just so happy that he is here to bless our lives with such wonderful joy and excitement and to teach us how we learn to love one another so much more through service to each other.
He’s now almost 18 months old and is such a happy boy. He isn’t discouraged to be fed through his G-tube still. After all, that’s what he is used to. He loves to laugh and kick his feet in excitement. Koby still sees a speech therapist, audiologist, physical therapist, occupational therapist, neurologist, pediatrician, surgeon (because of his G-tube), gastroenterologist, otolaryngologist, and a nutritionist regularly.
Although it’s been a rough year, it was life changing in so many good ways. The shock of Koby’s first year became a normal part of our lives. We spent weekends together as a family by staying home, watching movies, and just enjoying being together. We weren’t at the soccer fields or basketball courts as much as before, but that is OK. Sometimes simplicity is the best medicine. Our family is closer than we’ve ever been. Our five other kids have stepped up and been better and more loving. We love deeper now. We have more empathy for others who struggle, because we struggle more now. We know what it’s like to hurt inside and yet still smile and be happy and excited for the future.
About Our Author:
Steve was raised by loving parents and comes from a large family. He is a middle child, sandwiched between four brothers and one sister. Family is everything to him. Aside from his six children he has 34 nieces and nephews. He owns a home building business in Brentwood, Tennessee.