We had three oxygen tanks to use at home with Thomas. An over the shoulder portable tank for traveling home from the hospital and to doctor appointments. A slightly larger tank on wheels for use around the house. And a huge green tank which became the largest single "decoration" in his nursery. We also had a pulse oximeter and an apnea monitor, although the apnea monitor was really just a safeguard in case the pulse oximeter failed and the nasal cannula were to come out of place. With the oxygen came 50' and 10' hoses for between the tanks and the cannula (with the 50' hose, we could take Thomas through most of the downstairs and still have him connected to the tank in his bedroom).
Thomas' mother, grandmother and I had received training with all of the equipment. Natalie and I were most familiar with the equipment as is was similar to what we had become familiar with in the NICU. Other family members were to be trained as necessary as caregivers. No one outside of the family was permitted in the house until Spring.
We elected to keep even family members away for the first 24 hours. This allowed us to familiarize ourselves with the equipment and to develop routines with his equipment, feedings and the medications he was to continue at home (diuretics and vitamins). After 4 months as NICU parents, we found it easier than we expected to fall into a routine at home. In fact, as all he really did at this point was sleep and eat (he was equivalent to a 1 month old in development) there didn't seem much to it.
The easiest thing to remember was the continuous hand washing. This was a routine we developed in the NICU. The only reason I even mention it is because the doctors felt it so important.
The hardest part was the monitors. One of the first things many NICU parents learn is that most of the alarms emitted by the monitors are false alarms caused by misplaced leads or simple movement by the baby. However, it is important to look at the baby to make sure everything is okay. In the NICU, nurses are awake and ready to check the alarms as needed. At 3:00 am, Natalie and I were generally not awake. Between false monitor alarms and a baby who breast-fed every 2 hours, our sleeping patterns were completely disrupted.
Interrupted sleeping patterns are normal for new parents, as we were informed more times than was appreciated. However, most new parents don't have to wake up to make sure a cannula is in place, the oxygen is functioning and that there wasn't an extraordinary emergency situation developing. And while every parent worries that everything is okay, most don't have a high risk, special needs infant to be concerned for.
Natalie was off work the four weeks from when Thomas came home, until Christmas. I took off the week he came home and was off work between Christmas and New Year. The first week of January, our family took care of him at our house during the day (the only time he left our house that Winter was for doctor appointments). Grandma Genny was his primary daycare with occasional help from Grandpa Ziggy. However, Aunt Liz, Aunt Melanie and Grandpa Bob took turns as well. And I'm sure Grandma Mary watched over Thomas from Heaven.
Around Valentines Day, we had an appointment with the Neonatologist. We felt Thomas was ready to be removed from the oxygen. His Neonatologist agreed, however, the oxygen and monitors were to remain in the house until things seemed all clear.
On Palm Sunday, we took Thomas to church for his first outing. We also relaxed visiting restrictions, although we did ask for everyone to wash their hands before handling him. On May 7, 1995, Thomas was welcomed by the Church (we had him baptized the day he was born) and had a Christening party to introduce him to the entire family.
It was time to begin a more normal life :-)