Nicholas started this week on the lowest level allowable on the CPAP machine. He was breathing room air and only receiving pressure support to his lungs from the CPAP machine (and the lowest possible pressure support). He was breathing well on his own – so well that on Sunday we started to hear mumblings from the respiratory team that he might be ready to come off the CPAP machine soon. (“Soon” is a relative term I have come to learn during our time so far in the NICU).
Fortunately for us, “soon” was Monday morning. Dr. Faisal moved Nicholas off of the CPAP machine and onto a Vapo-Therm machine to help continue to stairstep him down off oxygen pressure support. This machine gives light “open loop” support to his lungs through only 1 nostril and is intended to be the last step before all oxygen support is removed and Nicholas is expected to breathe all on his own (all of the other oscillators, ventilators, and CPAP machines have provided “closed-loop” support meaning the pressure was delivered through a nasal canula that sat in both of his nostrils). Vapo-Therm machines can be set to a variety of pressures based on the baby’s needs. We started the week at +3 liters per minute of pressure (middle of the range for the machine) and our goal was to get to +1 before he would be removed from the machine.
Andy & I were anxious to start moving down on pressure on the Vapo-Therm almost immediately. That may sound impatient (believe me, we have our “when is this all going to be over?!” days where impatience permeates all we do) but we knew that once Nicholas was at +2 we could begin to try to bottle feed him. I longed for the day to be able to hold him and feed him. And now, that day was so close I could taste it and I wanted it. So did Andy. The doctors and nursing staff made it very clear that once Nicholas was at +2 on the Vapo-Therm the last big step for us to master in order to go home was to have Nicholas bottle feed. We were now starting to openly talk about what has been big the elephant in the room for us for weeks now – “When do we get to go home? What do we have to do?”. I haven’t asked those questions out loud since Nicholas was 1st born – mostly because I was fairly certain I wouldn’t like the answer. But now, it was starting to become common conversation for everyone on Nicholas’ care team.
Nicholas stayed on +3 until Thanksgiving when Dr. Faisal gave orders to move him to +2. Andy and I were so excited because Dr. Faisal also gave orders to start bottle feeding him within 24 hours. Happy Thanksgiving to us (or so we thought). Mary, our nurse on duty on Thanksgiving, moved him to +2 per the doctors orders and didn’t think he “liked it” so she moved him back to +3. When we arrived at the hospital to find this Andy & I were both a bit confused and frustrated. We felt like “didn’t like it” was a relative term and we wanted to see how he handled the +2 support for ourselves. She was resistant to change his pressure during the afternoon but suggested we speak with the nursing team that evening to wean him down.
So, we did. Mary may have underestimated Nicholas’ parents on this one. Between Andy’s analytical questions to the nursing team about standards for when and why a baby’s pressure support changes and his unwillingness to take “didn’t like it” as sound medical advice combined with my “We are so close, do not take this from me. Have I told you I haven’t seen my home in 2.5 months? I don’t remember what my house looks like. Oh, and I have 3 dogs which I haven’t seen. I am ready to get out of here. Do not take this from me. Move him back and lets see what he can do. Prove us wrong. I know my child is strong. ” which I tried to make come out as nicely as possible but probably sounded more like “Put him back on +2 now. Do not question me – I am the mom. Do it now. Have you done it yet? DO. IT. NOW.” we wore the evening nursing team down. At 5 AM he was down on +2 and was doing just fine (yes, we knew it was 5 AM because we called about every 2-3 hours to “check-in” – which is a nice way of me saying we called and said “Have you done it? DO. IT. NOW.”). Andy and I make no apologies for being so pushy on this issue – we knew how important it was to continue to progress Nicholas’ care.
With +2 support, Friday brought our 1st bottle feeding trial run with Nicholas. The nursing team told us to not expect much from him and if he could eat 5 cc within the allotted 30 minute window he would be doing good. Well, he ate 12 cc within 20 minutes before he got tired (or milk drunk as some say) and passed out, bottle in mouth, in my arms. So, the next day Dr. Faisal agreed to upping his bottle feeds to 2 times a day. Saturday, Nicholas ate 17 cc at both feedings. He was well on his way to following in the Moore & Szapacs men’s footsteps of solid eaters.
Another big victory for us this week was that we were able to move out of the isolette. Nicholas had been in an isolette since he was born as it was the optimal bed for him since it had noise barriers (to reduce stress) and could control the temperature around him so he didn’t work too hard to keep himself warm. Now that he weighed 4 pound 5 ounces, was wearing clothes all the time, and was proving he could hold his temperature just fine in the isolette it was time to move him out into the world. Friday night, he moved into a Caleo bed which starts out as an enclosed bed but is convertible once the baby adjusts to room air. By Saturday morning, Nicholas went convertible and was in an open-air crib and doing just fine holding his temperature and adjusting to sleeping and waking to the sounds around him.
Nicholas’ isolette where he spent the 1st 8 weeks.
Nicholas’ new convertible Caleo bed.