Friday, July 31, 2015

July 31 - Dear Nicholas Sparks (Guest Bloggers Martin and Andrea Salazar)

Dear Mr. Sparks,

My husband and I had been married almost six years when we decided to start a family. We were absolutely thrilled when we found out we were expecting. I will never forget our very first ultrasound. My husband held my hand as he stood next to me (I later thought it might have been a better idea for him to be sitting when his knees began to give way!) and we saw our little “peanut” for the first time. It was truly magical! We found out we were expecting a boy during our second ultrasound. It wasn’t until the third that we received the diagnosis—congenital diaphragmatic hernia. Our first indication something was wrong came when the technician became quiet. We grew increasingly concerned as the silence continued. She finally said she was trying to get a certain view of his heart, but nothing more. Our OB was in an emergency surgery that day so we were going to see an MA instead. The second indication something was wrong came when the technician said she was going to get one of the doctors to see us. We were taken into another room where the doctor sat down with us and said they believed our son had a diaphragmatic hernia. They were already calling a local perinatologist to schedule an ultrasound to confirm. After the confirmation, we learned a great deal about CDH and what was required: delivering at a hospital with a level III NICU, ECMO team, and pediatric surgeon. It was recommended that we do an amniocentesis to check for additional abnormalities. Being first-time-expectant parents and so very naïve to CDH at the time, we would have jumped off a cliff if that had been recommended. One decision we never had to consider was terminating the pregnancy—that was never an option for us. A bit of relief came with the amnio results—our son had no additional abnormalities. All future ultrasounds, which there were a lot of, would be done with the perinatologist so he could closely monitor our son.

I began having contractions early in my pregnancy and had to be monitored more closely. It may not have been for the best reason, but we loved the non-stress tests as we could hear the strength of our son’s heart. I was put on bed rest for a couple of weeks in hopes that I would make it to 34 weeks gestation. Much to the surprise of our doctor, 34 weeks came and went. We decided to schedule an induction at 39 weeks to ensure our OB and the NICU team would be prepared for the arrival of our son.
Rylan Matthew Salazar was born April 30, 2012 at 1:35 a.m. There were a few things we knew to expect after birth. We knew not to expect to hear him cry. We knew the NICU team would begin working on him right away. What I never expected was to hold my son. I know it was only for a brief moment, but I am eternally grateful for that moment and will never forget the NNP who handed my son to me. Shortly after that amazing moment, Rylan was whisked away to the NICU, my husband following closely behind. I do not remember how long he was gone, but it was long enough for him to watch the NICU team struggle to stabilize his firstborn child. He stood back and watched the rapidly growing number of lines and pumps and machines being inserted and connected to Rylan. It wasn’t until one of the doctors realized he had been quietly observing the organized chaos that he walked my husband back to our room. The next few days (and weeks and months) seemed to blur together.

Rylan was put on ECMO his second day of life and taken off one week later, his due date. His hernia was repaired two days later. He was given blood thinners after a blood clot was unintentionally discovered in his inferior vena cava and left iliac. On June 1, Rylan was extubated and I was able to hold him for the first time since he was born. Not surprisingly, I held him for as long as I was allowed. My husband held him for the very first time on June 2, 8 days before his birthday. On June 26, Rylan underwent surgery for a g-tube, Nissen fundoplication, and to have his stomach (which was midline) tacked to the left side of his abdomen. He began physical therapy on June 12. We were moved to the Graduate NICU on July 4—it truly was Independence Day!! On July 11, in preparation for taking Rylan home, I began to practice giving him the shots he needed for his blood clot (fortunately, we did not have to continue the shots at home). July 17 was the first time we brought our sweet little cherub home. We have since been admitted three times for a bowel resection, the flu, to have a second repair to his diaphragm, and to have his Nissen redone. We will soon be back in the hospital for what we hope to be his last surgery. His eye muscles did not develop correctly and need to be adjusted so that his vision does not become impaired in the future.

From the beginning of our journey, we were told it would take weeks or months for Rylan to overcome each individual hurdle. He beat every expectation and came home in less than half the time they anticipated it would take. One of our doctors nicknamed him “Rhino” within his first week of life. He couldn’t have a better nickname! He is such a strong little boy. Rylan requires different medications as he has severe reflux, struggles with feeding, and has chronic lung disease. Even with everything he has been through, he is such a happy little boy. He truly is our world and we are so blessed by him every day.

As parents of a child with CDH, we have different milestones, firsts, and exciting moments. When Rylan was in the NICU, we were thrilled to participate in his cares—taking his temperature, switching the location of his pulse ox, wiping his eyes with saline, swabbing his mouth with nystatin, and changing his diaper (depending on the comfort of the nurse). We were excited to take home the first blood pressure cuff he grew out of. We celebrated when he was finally home more days than he had been in the hospital. We have cried out of pure joy more times than we can count: the day Rylan finally tolerated being on a conventional ventilator; when he was extubated; each time a chest tube, IV, pump, etc. was removed; the first time we heard him cry, sneeze, hiccup, squeak, or make any noise from his mouth other than the noise his ET tube made when it had a leak; when he began to pee on his own without lasix; when he was moved into a “big boy” crib; the first time we were able to feed him mommy’s milk (with a 1 ml syringe); when he was well enough to move to the Graduate NICU; when we were given a date for discharge; when we found out we would not have to give him shots at home for his clot; the first time our son became “cordless” and we were able carry him around the unit; when we brought him home for the first time; the first time he drank from a bottle; and the first time he tried pureed food. Our most recent milestones: on February 27, he sat by himself for the first time and on February 28, his echocardiogram showed no signs of pulmonary hypertension and he no longer needs oxygen during the day!

When we first met with a neonatologist and were given a tour of the NICU, he introduced us to the family of another Cherub. Their daughter had her repair the day before and was doing very well! We are so grateful for the love and prayers we received from them and their family and friends. As we left the hospital that day, the first thing we heard on the radio was a story about a baby boy who survived CDH. Even through all the uncertainty and helplessness we had been feeling, that day was a day filled with hope for the future, hope for the survival of our son. CDH can be exhausting and terrifying. We wish to bring other families hope with Rylan’s story and will continue to keep all touched by CDH in our thoughts and prayers!

Written by Rylan's parents, Martin and Andrea Salazar (Colorado)

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