The severalty of our baby boy's condition was made even more complicated when he made his debut three months premature on July 19, 2014. The first few days and even weeks remain blurred as we tried to process the magnitude of his illness and helplessly watched him struggle for every breath. He quickly earned the reputation around the Hopkins NICU as "Chronically Complicated Caleb". I remember vividly day twenty-four when we held Caleb for the first time just a few hours before he would undergo his initial CDH repair surgery. Although this surgery proved to be life saving, we were told that morning to prepare as if it could be our last day with him. We got our happy ending that day, but it is hard not to think about how it could have easily been the worst day of our lives. Since that day, Caleb went on to recover from five more surgeries and bounced back from numerous blood infections, viral infections, pneumonia, and too many blood transfusions to remember.
On June 16, 2015, we brought Caleb home for the first time and began our new "normal" life as a family of four. In his 332 days of hospitalization, we were fortunate enough to be able to visit with him on all but five days. Our daily routine was draining and sometimes felt overwhelming, but we knew the importance of remaining Caleb’s biggest advocate. Unfortunately, spending time with Caleb meant less time with Brody and we learned quickly that balancing our time between a healthy and sick child would be the most difficult part of this process. Brody’s resilience over the eleven months was truly remarkable and he welcomed his baby brother home with open arms and a huge smile. I will never forget the first night we were home when he said to me “I didn’t know, but I really love Caleb.” This made me realize just how far we had all come and grown through this experience...
In the weeks since Caleb’s discharge, he has adjusted well to his new room, caretakers, therapy, barking dogs, and a crazy family. He is learning the joys of being a baby and we are treasuring endless hours of play time, snuggles, going for walks and the perks of just being a family in our home. Prior to leaving Mt. Washington Pediatric Hospital, the team focused on weaning Caleb from the vent and his progress has been incredible. He still requires a minimal amount of oxygen, but he is breathing on his own for twelve hours a day. The timing was perfect as it makes life at home a bit easier since he is only vent dependent at night. Caleb will be scheduled for a sleep study in the next few months to determine if he is strong enough to be weaned from the vent completely. Breathing on his own during the day means less tubes and this has been crucial for his development. He receives therapy a few times a week and is beginning to grasp the concept of tummy time, sitting up, and rolling over. Eating by mouth remains one of Caleb’s main challenges, but we will continue to introduce pureed foods until his feeding clinic begins in September.
Caleb requires around-the-clock care and we have been extremely lucky to find a few wonderful nurses who treat him as if he was their own. For now, we have been granted with day shift hours during the week while we work and night shift hours for when we are sleeping. There are many times, however, when the responsibility falls on the two of us and we wouldn’t change that for anything since it means he is home. This only makes getting out of the house more complicated, but we are hopeful that it will get easier with time.
A day with Caleb entails:
- Reacting to the alarm of his pulse oximeter, which monitors the oxygen saturation in his blood and his heart rate.
- Reacting to the alarm of his vent.
- Transitioning him on and off the vent every twelve hours.
- Preparing his feeds for a twenty-four hour period.
- Filling his feed bag every four hours.
- Changing his tracheostomy ties and cleaning his neck each night.
- Administering medicine through his G-J tube almost every two hours.
- Restocking and ordering supplies.
- Attempting to feed him by mouth three times a day.
- Bath and play time.
We will be forever thankful to everyone at Johns Hopkins Hospital and Mt. Washington Pediatric Hospital that not only played a role in Caleb’s amazing progress, but also helped push us through the darkest of moments. As much as I would like to forget the countless hours spent in Caleb’s hospital rooms, I believe the entire experience has made me a better person and mother. Best of all, Caleb’s cuteness and our determination to be by his side day in and day out enabled us to build friendships that will last a lifetime.
Throughout this journey, we learned the importance of reaching out to others. We met children dealt a similar prognosis at birth to Caleb, who were thriving despite having overcome a magnitude of challenges. We are grateful to their parents for sharing their story and giving us a sense of hope, especially at times when fear and sadness seemed to take over. We also found support among other parents currently struggling to cope with and care for their sick baby. I will never fully understand or comprehend why some of their stories ended with loss, but after months and months of uncertainty, it is a constant reminder that Caleb is still very fragile and our days with him should never be taken for granted.
Caleb has been home for one month and it has been incredible. His smile can brighten up a room and his happy personality seems to be contagious to everyone around him. Our only wish is that he remains healthy so he can continue to get bigger and stronger each day. Today, Caleb attended his 1st Johns Hopkins NICU graduation party. We will be continuing the celebration this weekend as Brody turns SIX and Caleb turns ONE! It has been a crazy year, but one of which we will never forget. Thank you again to our family and friends for your continued love, support, and guidance…
Happy Birthday to our boys!