Caleb turned four on July 19th and it’s hard to believe that our once 3 pound 2 ounce little baby clinging to life is now a toddler. He was welcomed by emergency c-section at 28 weeks to an incredible team of doctors, nurses and respiratory therapists at Johns Hopkins Hospital who would save his life more times than we care to remember. At birth, they performed chest compressions, placed him on a ventilator, gave him supplemental oxygen and admitted him to the NICU where he would stay for the first seven months of his life before being transferred to Mt. Washington Pediatric Hospital for another four months. His home became a place with more machines than you can imagine and we quickly became accustomed to needles, catheters, chest tubes, IV’s, arterial and central lines, and the constant sound of monitors alarming. That home became our home for eleven very long and exhausting months. Born at 28 weeks with a congenital diaphragmatic hernia (CDH) left Caleb with little chance of survival and that makes him our miracle. The scars all over his little body do not allow us to forget, but yet remind us of the struggles, pain, and triumphs we have experienced along this crazy CDH journey. Each scar tells a different part of his story, shows just how far he’s come and most importantly, they are what makes him imperfectly perfect.
Having a child with complex medical issues can be very challenging; however, Caleb has made being a parent to a child with special needs an incredibly rewarding experience for our family. Caleb is happy….ALWAYS HAPPY. He is happy in his crib for feeds, naps and bedtime. He is happy when being forced to exercise during therapy. He is happy when being pushed around in his wheel chair or going for rides in the car. Most of all, he is especially happy when scooting around on his back and playing with his favorite toy…the red mirror! I often tell people that he could be placed in the middle of an unfamiliar room on his back with his red mirror and a few other toys and I honestly think he would be content for days...not even getting bothered by a soiled or poopy diaper. His giggle is the best and can make you laugh from across the room and he has the most contagious smile. In Caleb’s world, there is no evil and there are no harsh and unforgiving people. As parents, he has taught us many life lessons...we can survive much more than we ever knew possible, every moment counts and there are moments we will never get back again, we have learned to slow down and appreciate every milestone for the huge accomplishment it is, and we have recognized that when times are incredibly hard, we keep going long after we ever thought we could. Brody too will learn a lot of life lessons from his little brother and some of them will not be easy. I hope that having a brother with special needs will make him more sensitive and empathetic and encourages him to stand up for those weaker or have less. He’s adjusted his expectations to fit what is possible, and not what is so-called "normal” and he’s learned to love Caleb without expecting anything in return since Caleb cannot show or tell him. They may never have the traditional brother relationship that we wish they could have, but we can still try to instill in Brody that they can be best friends.
It has been over a year since my last post in May of 2017 and Caleb was about to undergo his 11th surgery to remove his tonsils and adenoids in hopes it would resolve his obstructive sleep apnea. It was a rough recovery, but he handled it like a champ and the surgery proved to be successful. A follow-up sleep study gave Caleb’s ENT the results she needed to attempt decannulation. This huge milestone for Caleb came last September and he has been doing amazing ever since with no tracheostomy and he hasn’t had any major respiratory issues. He’s had a few minor illnesses but none resulting in hospitalization, which has been such a relief for all of us. The best moment came about four months after decannulation when Caleb finally found his voice. It is an incredible feeling when you hear your 3 1/2 year old making sounds and babbling for the first time. He of course makes very loud happy screams most of the time and every now and then he will have a one-minute crying fit because he bumped his head and that too is great to hear after waiting so long. All this being said, Caleb is still non-verbal and we are not sure if that will ever change as it is too early to know. He makes sounds like “dada”, “mama”, “me”, “mine” and a few others, but it does not seem purposeful at the moment. Caleb has been working with speech therapists who are trying to encourage him to communicate in other ways such as choosing between two toys using pictures and pointing. On April 27, 2018, Caleb had his 12th procedure to surgically close his stoma hole since the hole did not completely close on its own. They removed the scar tissue from around the stoma and they put in a temporary trach until he woke from surgery. Then after he was wide awake, the ENT came to remove the trach. It was left like an open wound with no stitches to keep extra air from getting trapped under the skin. After successful decannulation and full closure of the trach hole, Caleb was finally able to experience his first swim in the pool this summer and he absolutely loved it.
In addition to speech therapy, we have worked really hard in arranging a combination of physical therapy, occupational therapy and vision therapy for Caleb that he receives 8-10 times a week. He has made great progress, but in typical Caleb fashion, it has been slow and steady. Just recently, he mastered getting up on all fours and sitting from a laying position, he can stand with his walker and take steps across the room if progressed, and he has built up his stamina and sits for longer periods of time. However, he still prefers scooting from toy to toy on his back! Finding something that motivates Caleb to see the world from a position other than his back seems like an impossible, but we will keep trying day in and day out. Caleb has been diagnosed with Cortical visual impairment (CVI), which is a decreased visual response due to a neurological problem (most likely resulting from his brain bleed) that affects the visual part of the brain. The eye structure in CVI is usually normal so his eye takes a normal picture of an object and sends the message to Caleb’s brain, but the message is not properly processed or integrated because of his abnormal brain function. Some characteristics of CVI in Caleb are that he prefers colors such as red, blue and yellow, he gazes at lights, he has difficulty seeing things at a distance and often brings objects very close to his eyes for magnification, and he only looks at familiar or favorite objects with very little regard for new objects. As Caleb’s brain matures, new connections can develop in his brain to overcome the initial injury or deficit and improve the function, however it is difficult to predict his future visual function.
We have been able to further wean the number of medication doses Caleb receives (twenty-two when he came home) to three, which includes two inhalers and a multi vitamin. He stills requires oxygen 24 hours a day, but otherwise he is doing well. He’s had additional follow-up appointments with cardiology and neurosurgery. His echocardiograms have showed that his heart is functioning normally and that the pulmonary hypertension that he once had has fully resolved. His head ultrasounds have also remained stable meaning his shunt is working properly. This is great news but since the status of these things can change momentarily, he will be monitored closely and will have a repeat echocardiogram every six months and repeat head ultrasound every eight months. The latest x-rays of his chest still show a persistent 4th hernia. A small portion of his spleen and bowel have migrated into his chest along with the shunt tubing that was placed within the fluid-filled ventricle on his brain and passes under the skin on his right chest. Rather than ending in his abdomen cavity as it should, the tubing resides in his left chest. Although Caleb's surgeons are still very concerned, he is stable and they want him to get as big and strong as possible before they undertake another major surgery to repair the hernia. Instead of repairing this hernia through his abdomen, they will most likely need to make a surgical incision in his chest (thoracotomy) due to the amount of scar tissue already in that area from his previous surgeries. So, with no way of knowing when this time will come (days, weeks, or even years), we will keep pushing forward and enjoying every moment he is home and happy!
The toughest part of this journey will always be not knowing what the future holds for Caleb. He’s non-ambulatory, non-verbal, g-tube and oxygen dependent, still in diapers, and developmentally only functioning at maybe a one year old, if that. When milestones like birthdays and starting preschool come around, I often find myself wondering “what if.” What if Caleb was born a typical kid? What would he be like? What would he be into? Superheroes? Dinosaurs? Monster Trucks? Would he be starting soccer or tee ball? I quickly try to stop that kind of thinking because Caleb is who he is and I don’t want to change him, but it is so hard for him to successfully do what comes naturally to typically developing children, such as walking, talking, dressing and feeding himself. As his parent, I can honestly say that it can be difficult to watch other children who are successfully reaching milestones at appropriate times. It’s not that I am not happy for those children and their parents, but it makes it harder to watch the struggles that Caleb has to deal with in order to do things that are so easy for other children to do. With that being said, it is so rewarding to see him reach each and every milestone. Caleb doesn’t throw temper tantrums, but he also doesn’t acknowledge us when we enter his room or cry for us when we leave. Although this makes me sad, I will never complain about how hard or unfair everything is because Caleb is happy and I am most thankful for that. Over the years, we have accepted that Caleb is different than we imagined and we have learned to embrace the unknown and live in the moment because everything could change in an instant.
Our lives are filled with more laughter, love and joy than it is with struggle and pain and we call that a good life. Caleb often reminds us that life can be stressful, crazy and a bit unpredictable, but he is also a constant reminder that life is precious.
In honor of my sweet mother, Janis Doten, who passed away suddenly on December 2, 2017 at the young age of 65. She always said Sundays were for RAVENS football and the day she got her 'Caleb' fix of snuggles and play time.