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When we learned of Caleb's CDH prognosis at an ultrasound on May 13, 2014, the excitement of our pregnancy was suddenly replaced with an overwhelming sense of uncertainty. At the time, we had a happy, healthy and very energetic four year old son, Brody. He loved LEGO minifigures, practicing his golf skills, being Daddy's fishing buddy, playing America's pastime: Baseball, and watching his favorite movie 'The Sandlot'. Brody was the highlight of every moment we spent outside of work and of course, sleeping and we had hoped to make him a big brother one day.
We were on our 6th pregnancy, after losing four, due to an ectopic/tubal pregnancy and three miscarriages. After two years of trying, we began to question how much longer we could take of the vicious cycle of excitement, anticipation, and grief. Although we were physically and emotionally drained, each loss was essential in making us stronger as a couple, better parents to Brody, and most importantly it was a constant reminder that we had already been given the greatest gift of all...one healthy little boy.
The rest is history as our 2nd boy, Caleb, turned one on July 19th. If I had to describe Caleb's first year and the few months before his very early arrival…I would use the word BLUR! We educated ourselves on what it meant to have a child with a congenital diaphragmatic hernia, prepared for the unknown and worst possible outcome, and hoped with all we had that our baby boy would be able to survive this devastating birth defect. CDH occurs when a hole in the diaphragm fails to close and allows the contents from the abdomen (stomach, intestines, and/or liver) to migrate into the chest. When the abdominal organs are in the chest, it prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs). Since the lungs are one of the last organs to mature, the doctors stressed the importance of delivering as close to full term as possible. Caleb, on the other, had a different plan and made his debut prematurely at twenty eight weeks. Our celebration and joy over the birth of Caleb was brief as this brought about a new set of challenges and would further compromise his ability to survive.
As parents, Caleb's first year encompassed every emotion from one end of the spectrum to the other...over and over again. With his ever changing status, we were beyond thankful for every moment spent with him and happy for every hurdle crossed, but these times were often accompanied with feelings of sadness, helplessness, stress, anger, complete exhaustion, and most of all we feared losing our baby boy. On one of Caleb's worst days ever, I vividly remember a conversation with one of our favorite NICU doctors when she spoke about palliative care. To palliate means to relieve and palliative care is care designed to make your baby as comfortable as possible when it is clear that further treatment aimed at a cure is neither possible nor effective. Knowing this was a possibility was one thing, but hearing those words was heartbreaking. Caleb must have sensed our devastation that night as he recovered from that day and continued to fight through many more obstacles and setbacks.
Caleb was a few days shy of eleven months old when we finally brought him home on June 16th! In his time spent between Johns Hopkins Hospital and Mt. Washington Pediatric Hospital, I visited my buddy on all but five days. I could not come to terms knowing that Caleb was alone and in his crib for the majority of twenty four hours a day. But, as a parent of a sick baby, I was often torn between spending time with Caleb in the hospital and maintaining my other family and professional responsibilities. I went back to work full time when Caleb was only five weeks old and struggled to balance my time between Brody who had just started kindergarten and Caleb who needed us to remain his biggest advocates. Brody knew that Caleb was sick, but he did not fully understand why it meant we had to be so much more absent from his life than normal. We worried that he would begin to resent us and Caleb, but instead he matured as a little boy, welcomed his baby brother home, and taught us a powerful lesson on resilience.
Until Caleb came home, I felt as if my life outside of caring for him, had stopped. It was an exhausting time for all of us, but we somehow made it and we are enjoying our 'family of four' status at home! Thank you to my amazing husband for being my rock and keeping it together at times when I was falling apart, for being patient with me and always understanding my need to spend as much time with Caleb as possible. There is no other person I would have wanted to walk with on this journey. To our parents, siblings, extended family and friends, we will be forever grateful for your guidance, support, and unconditional love. Your help with Brody, countless hours visiting Caleb and keeping us company in the hospital, thoughtful messages, and meals were essential in getting us through the past year. Lastly, there are no words to express our sincere gratitude to the team of doctors, nurses, therapists and staff at Johns Hopkins and Mt. Washington…Caleb made it to where he is today because of all of you! Through this experience, we have met some incredible people and gained friendships that will last a life time.
Due to Caleb's early arrival, he now gets to celebrate his birthdays with his awesome big brother. This year, Brody turned six on July 18th and Caleb made it home just in time for his 1st birthday on July 19th. Brody had a sports themed party and we decorated Caleb's cake with an airplane (only fitting for CDH awareness which is represented with clouds).
Check back soon for an update and status on Caleb's progress over the past few months. Spoiler alert: He has been vent free and breathing on his on for almost one month and is only requiring a minimal amount of oxygen. Life with him at home has been fun, crazy and of course full of Caleb complications. It has encompassed a lot of therapies, doctor's appointments, emergency room visits, a 911 call and an ambulance ride. Now, our only goal for the changing season is to get him healthy and keep him healthy…this is already proving to be quite the challenge and it's only Fall. Although he has overcome the initial complexities of CDH and prematurity, we are constantly reminded of just how fragile he remains.
Timeline of events and memories on our CDH journey:
We were on our 6th pregnancy, after losing four, due to an ectopic/tubal pregnancy and three miscarriages. After two years of trying, we began to question how much longer we could take of the vicious cycle of excitement, anticipation, and grief. Although we were physically and emotionally drained, each loss was essential in making us stronger as a couple, better parents to Brody, and most importantly it was a constant reminder that we had already been given the greatest gift of all...one healthy little boy.
The rest is history as our 2nd boy, Caleb, turned one on July 19th. If I had to describe Caleb's first year and the few months before his very early arrival…I would use the word BLUR! We educated ourselves on what it meant to have a child with a congenital diaphragmatic hernia, prepared for the unknown and worst possible outcome, and hoped with all we had that our baby boy would be able to survive this devastating birth defect. CDH occurs when a hole in the diaphragm fails to close and allows the contents from the abdomen (stomach, intestines, and/or liver) to migrate into the chest. When the abdominal organs are in the chest, it prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs). Since the lungs are one of the last organs to mature, the doctors stressed the importance of delivering as close to full term as possible. Caleb, on the other, had a different plan and made his debut prematurely at twenty eight weeks. Our celebration and joy over the birth of Caleb was brief as this brought about a new set of challenges and would further compromise his ability to survive.
As parents, Caleb's first year encompassed every emotion from one end of the spectrum to the other...over and over again. With his ever changing status, we were beyond thankful for every moment spent with him and happy for every hurdle crossed, but these times were often accompanied with feelings of sadness, helplessness, stress, anger, complete exhaustion, and most of all we feared losing our baby boy. On one of Caleb's worst days ever, I vividly remember a conversation with one of our favorite NICU doctors when she spoke about palliative care. To palliate means to relieve and palliative care is care designed to make your baby as comfortable as possible when it is clear that further treatment aimed at a cure is neither possible nor effective. Knowing this was a possibility was one thing, but hearing those words was heartbreaking. Caleb must have sensed our devastation that night as he recovered from that day and continued to fight through many more obstacles and setbacks.
Caleb was a few days shy of eleven months old when we finally brought him home on June 16th! In his time spent between Johns Hopkins Hospital and Mt. Washington Pediatric Hospital, I visited my buddy on all but five days. I could not come to terms knowing that Caleb was alone and in his crib for the majority of twenty four hours a day. But, as a parent of a sick baby, I was often torn between spending time with Caleb in the hospital and maintaining my other family and professional responsibilities. I went back to work full time when Caleb was only five weeks old and struggled to balance my time between Brody who had just started kindergarten and Caleb who needed us to remain his biggest advocates. Brody knew that Caleb was sick, but he did not fully understand why it meant we had to be so much more absent from his life than normal. We worried that he would begin to resent us and Caleb, but instead he matured as a little boy, welcomed his baby brother home, and taught us a powerful lesson on resilience.
Until Caleb came home, I felt as if my life outside of caring for him, had stopped. It was an exhausting time for all of us, but we somehow made it and we are enjoying our 'family of four' status at home! Thank you to my amazing husband for being my rock and keeping it together at times when I was falling apart, for being patient with me and always understanding my need to spend as much time with Caleb as possible. There is no other person I would have wanted to walk with on this journey. To our parents, siblings, extended family and friends, we will be forever grateful for your guidance, support, and unconditional love. Your help with Brody, countless hours visiting Caleb and keeping us company in the hospital, thoughtful messages, and meals were essential in getting us through the past year. Lastly, there are no words to express our sincere gratitude to the team of doctors, nurses, therapists and staff at Johns Hopkins and Mt. Washington…Caleb made it to where he is today because of all of you! Through this experience, we have met some incredible people and gained friendships that will last a life time.
Due to Caleb's early arrival, he now gets to celebrate his birthdays with his awesome big brother. This year, Brody turned six on July 18th and Caleb made it home just in time for his 1st birthday on July 19th. Brody had a sports themed party and we decorated Caleb's cake with an airplane (only fitting for CDH awareness which is represented with clouds).
Check back soon for an update and status on Caleb's progress over the past few months. Spoiler alert: He has been vent free and breathing on his on for almost one month and is only requiring a minimal amount of oxygen. Life with him at home has been fun, crazy and of course full of Caleb complications. It has encompassed a lot of therapies, doctor's appointments, emergency room visits, a 911 call and an ambulance ride. Now, our only goal for the changing season is to get him healthy and keep him healthy…this is already proving to be quite the challenge and it's only Fall. Although he has overcome the initial complexities of CDH and prematurity, we are constantly reminded of just how fragile he remains.
Timeline of events and memories on our CDH journey:
- February 2, 2014 ~ Positive Pregnancy Test
- May 13, 2014 ~ Fetal Anomaly Scan (showed a baby boy with CDH)
- July 19, 2014 ~ Happy Born Day (12 weeks premature)
- August 12, 2014 (24 Days Old) ~ Surgery #1: Initial CDH repair and our 1st time holding Caleb.
- September 3, 2014 (46 Days Old) ~ Surgery #2: Placement of Ventricular Peritoneal (VP) Shunt
- October 8, 2014 (81 Days Old) ~ Caleb meets big brother, Brody, for the 1st time.
- October 9, 2014 ~ Original Due Date
- October 14, 2014 (87 Days Old) ~ Surgery #3: Laser Eye Surgery for Retinopathy of Prematurity
- October 15, 2014 (88 Days Old) ~ Surgery #4: Repair of 1st CDH Re-herniation
- November 14, 2014 (118 Days Old) ~ Surgery #5: Tracheostomy
- December 10, 2014 (144 Days Old) ~ Caleb is held by big brother, Brody, for the 1st time.
- February 10, 2015 (206 Days Old) ~ Transitioned from Johns Hopkins Hospital NICU to Mt. Washington Pediatric Hospital.
- April 19, 2015 ~ International Day of Congenital Diaphragmatic Hernia Awareness.
- April 30, 2015 (285 Days Old) ~ 1st Leisurely Trip Outside
- May 5, 2015 (290 Days Old) ~ Surgery #6: G-J Tube and Repair of 2nd CDH Re-herniation
- June 16, 2015 (332 Days Old) ~ Transitioned from Mt. Washington Pediatric Hospital to HOME.
- July 18, 2015 - Celebrated Broyd's 6th Birthday
- July 19, 2015 ~ Celebrated Caleb's 1st Birthday
Brody turns SIX & Caleb turns ONE
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1st Year Pictures ~ Month by Month
 | Caleb Brian Salkeld Born At: Johns Hopkins Hospital Date: July 19, 2014 Gestational Age: 28 weeks/2 days Time: 11:44 pm Length: 15 and 3/4 inches Weight: 3 lb and 2.09 oz |
 One Month Old |  Two Months Old |  Three Months Old |  Four Months Old |
 Five Months Old |  Six Months Old |  Seven Months Old |  Eight Months Old |
 Nine Months Old |  Ten Months Old |  Eleven Months Old |
ONE YEAR OLD
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