Our NICU Journey

Cash made his debut into the world on Friday, April 27, 2018. Despite his scheduled C-section at 39 weeks the following week, Cash was ready to take on the world and defeat this diagnosis.

Hearing Cash’s sweet little cry brought us instantly to tears. It was a very symbolic moment. It was time. All of the preparing, the tears, and the prayers were meant for this moment. My 8 lb 9 oz, miracle boy was here. And he was perfect. With a head full of hair, the plumpest cheeks and lips, the sweetest little angel kisses on his forehead and eyes, we were so smitten.

Spina bifida causes an opening in the back due to incomplete formation of the spine in the womb. The opening has to be closed quickly. That being said, we were prepared for surgery right away. At 5pm on Cash’s birthday, our neurosurgery team took Cash to the OR for his closure surgery.

The closure was successful, but we would still need to monitor the ventricles in his brain over the next few days. Because of the defect in his spine, cerebral spinal fluid does not flow properly and the build-up of excess fluid causes a condition known as hydrocephalus. Therefore, it is not uncommon for kiddos with spina bifida to need a ventricular shunt to assist with the cerebral spinal fluid flow. At four days old, Cash had an MRI that confirmed hydrocephalus and Chiari II malformation (both expected diagnoses with myelomeningocele spina bifida). At five days old we made the decision to have a second surgery for ventricular shunt placement. By the time Cash had his shunt surgery, I had already been discharged from the hospital and began to adjust to NICU life.

For the next 36 days, Chase and I would travel 50-60 minutes to and from Dallas each day, sometimes twice a day. It became a normal that I will never forget. Drop Charlee off at school, drive to Dallas, get to the NICU floor, show ID, scrub in, get bedside report, nurse Cash, snuggle with Cash, meet with the physicians, nurse Cash, snuggle with Cash, go pickup Charlee, pump, sleep and repeat. If you’ve ever had a child in the NICU, you can probably understand the complete and utter exhaustion we felt.

Cash was thriving in the NICU. He was gaining weight well and eating like a champ. Cash was known to take down five ounces every three hours at just three weeks old. The nurses joked about him being the biggest baby with the best appetite in the NICU. Two weeks into our stay, we were discussing discharge, but sadly, we hit a snag. Cash had an inguinal hernia that needed to be repaired. I remember bawling in my husband’s arms as we heard the news. I was so upset that he was going to need a THIRD surgery. The surgery team and neonatologist assured us that after the hernia was repaired, we would be on our way home.

But God had other plans. Cash’s surgical site on his back began to reopen. It would take the plastic surgeon two additional surgeries to get Cash’s closure site stable. Slowly but surely, he was healing nicely and discharge was being discussed yet again. Discharge was so close that Cash was moved to a room upstairs where I roomed in to prepare for life at home.

The next morning, I woke up to some news that would halt homecoming. Cash would actually have to stay for several more days because a wound culture came back positive for an infection. After several days of IV antibiotics and a shunt revision surgery, Cash was ready to go home!

6 weeks… 42 days… and 6 surgeries later, Cash was discharged from the hospital weighing a healthy 13 pounds! Going home meant Cash would FINALLY meet his big sister. We were overcome with joy and thankfulness to have Cash home!

Stay tuned to my next post for our PICU journey…

-Carly