We missed out on a lot during Kellisa's time in the NICU, but Lisa missed one of the moments that moms cherish and remember forever, getting discharged with their newborn. It wasn't the same, but a nurse wheeled Lisa out of the hospital with Kellisa on her lap. Even with the oxygen, monitors, and wires everywhere, it was a beautiful moment.
The one normal thing we did was order a large wooden stork to be placed on our front lawn for Kellisa’s arrival. It was huge with a large red heart painted with Kellisa’s name and date of birth. When we arrived home, we took celebratory pictures of Kellisa with the stork in front of our house. After the pictures, Lisa carried Kellisa through our front door for the first time. Kellisa was home.
The house needed to be prepared in advance for Kellisa’s homecoming. Since she came home on oxygen, we needed a large oxygen cylinder placed in the center of our house with tubing that could reach the farthest corners. This would allow Kellisa to remain hooked up to one main cylinder. We had small portable canisters to use when leaving the house. We placed a basinet at the foot of our bed. Kellisa’s monitors could hang from the outside of the basinet guaranteeing we would hear any alarm during the night. If she decided to stop breathing, we could easily flick her tiny foot and snap he back.
We were told to contact the utilities companies which we did before Kellisa got home. This was done to guarantee continued electricity, gas, and water in case of an outage. We also contacted the village we lived in to let them know about Kellisa. This would give police and fire advanced information in case of an emergency. We were also given information on our local shelters that could handle Kellisa in case we needed to evacuate.
It was impossible to settle in to any kind of normal routine. Even though Kellisa was stable enough to be released from the hospital, she was still attached to the oxygen and monitors with Lisa and me as her source of first responders. The excessive responsibility was a burden at times.
In addition, Kellisa needed to be seen by all the same specialists she was seeing in the hospital. This meant a 70 mile round trip drive through Chicago traffic multiple times a week with a baby attached to heavy oxygen cylinders and wired to bulky monitors that needed to be fully charged for the trips.
We were also in a race against the seasons. My new job wanted us to relocate to Florida. We had mixed feelings about accepting the offer, but it became an easy decision once the doctors in the NICU told us it would be the best thing for Kellisa’s health. Kellisa’s lung tissue was still damaged from her birth and preemies like her usually get pneumonia during winters in Chicago. Kellisa was not in a position to take on pneumonia with odds in her favor. The doctor told us to expect pneumonia every year if we stayed.
Doctors were watching Kellisa’s eyes closely because like a lot of preemie, she had Retinopathy of Prematurity (ROP). Low weight preemies are at risk to develop ROP due to the oxygen therapy received in the NICU to treat underdeveloped lungs. Like everything else we would learn, ROP can be mild to significant. The main issue is disorganized growth of retinal blood vessels. Milder cases may resolve without intervention. More serious cases can lead to retinal detachment and blindness.