At 25 weeks and 5 days, Grayson and Scarlett decided they could no longer wait to come into our world. They cried on their own, little cries which suited their 1 pound, 15 ounces, and 2 pound bodies. They were wheeled from the OR to the NICU and into the plastic boxes that I later came to both appreciate and despise.
Day-of-life 2 was when reality sunk in for us. One of Grayson’s machine started alarming that his oxygen levels were dipping, despite being on a ventilator. The nurse saw the alarm, checked the tube, and then call the Practitioner. The Isolette was opened up, the tube was pulled, and the resuscitation bag came out. I watched while my little boy struggled and I will never forget that shade of blue. I couldn’t do anything but pray, cry, and start to wake up to the reality of extreme prematurity. Thankfully, the NNP and nurses saved my son’s life!
The next few weeks were a steep learning curve as we discovered the differences between High Frequency Oscillators, Ventilators, CPAPs, SiPAPs, and cannulas; blood gas tests, Billirubin lights / phototherapy to treat jaundice; the caloric make-up of breast milk vs. formula, TPN, lipids, liquid protein, caffeine, and Lasix; surfactant, PICC lines, blood transfusions, and even a spinal tap.
The diagnoses starting rolling in: Grayson had Grade 3/4 Intraventricular hemorrhages (IVH), an infection in his throat, encephalmolacia, a UTI, the beginnings of Periventricula leukomalacia (PVL) and Pulmonary Hypertension. Scarlett had bacterial meningitis and tachycardia. Both kids had Patent Ductus Arteriosus (PDAs) and then Bronchopulmonray Dysplasia (BPD).
We transferred to Nationwide Children’s main campus at 10 weeks old and 2 days’ later into the BPD unit. Scarlett was discharged on the day before she turned 18 weeks old and Grayson came home 1 week later. Both were on supplemental oxygen and started physical therapy for torticollis.
They celebrated their 2nd birthday recently and anyone who meets them would say they are happy, healthy, toddlers. They have weekly Physical Therapy, Occupational Therapy, and Speech Therapy to catch and keep up with milestones. On their most recent assessment at NCH, they were “caught up” with the skill levels of their peers. Grayson was diagnosed with Level 1 Cerebral Palsy, specifically Hemiplegia. He has to work harder to use the left side of his body, especially his hand, arm, and leg. We feel confident that Nationwide Children’s Hospital was the best place in the world to take care of our babies and consider our story a successful and happy one!