Andy had to be back in NC for a few days this week. Its a hard adjustment for me when he has to travel home because what little normalcy I have here unravels (and trust me, there isn’t a lot of ‘normal’ to begin with!). Not to mention, the timing of this trip wasn’t ideal – we were in the midst of a blood transfusion ending and an infection beginning.
On Sunday, as I headed to the NICU, I learned that the blood transfusion was a success but that Nicholas’ blood work was showing signs of an infection in his bloodstream – the type of infection was yet to be determined. Dr. Sultan began Nicholas on a round of antibiotics that would last a minimum of 3 days until he could learn more about the infection and hopefully nip it in the bud before it go out of hand. We spent the next 4 days having chest x-rays and blood draws every morning to monitor the infection until Dr. Abril (our primary physician who was now back!) was confident the infection had cleared. On Wednesday evening Nicholas received his last dose of antibiotics. Dr. Abril wanted to leave his IV in for a few days to make sure the infection didn’t need anymore attention but, on Thursday morning, Nicholas managed to kick the IV out himself. Fortunately, the infection was gone and we didn’t need another IV put in. Nicholas got his way – no more IV.
On Monday, I met with the team of NICU “occupational therapists” for the 1st time. They. Are. Simply. Amazing. Through touch and massage they are able to help with muscle recall that otherwise premature babies would be missing out on since most of their muscle recall happens in the womb. I could see the difference in Nicholas almost immediately. He became more alert to our touch and voices and less resistant to medical touches (ie – blood draws, suctioning, measuring his growth). I’m thankful for their non invasive ways of helping Nicholas adjust and grow to life outside of the womb. We get to see them 3-4 times a week while in the NICU and I think both Nicholas and I look forward to their visits.
Nicholas remained on the NAVA ventilator at the beginning of the week. He was maintaining his breathing much better than he had been in the past few weeks. On Monday, I began to hear murmurings that he might be strong enough to take him off of the ventilator and move him to bubble CPAP. This would be a large step for us as he was still small – weighing on 2 pounds 12 ounces. Bubble CPAP is a machine that allows Nicholas to breathe completely on his own and provides constant oxygen pressure support to help strengthen his own breathing patterns.
On Wednesday evening as my dad & I left the NICU and were headed home for the night, I received a phone call from the NICU. Jovita, our primary nurse (more on Jovita later), explained that Nicholas had successfully pulled his ventilator tube out of his throat and mouth for the 5th time that day and so, Dr. Abril decided to take the hint from Nicholas that he didn’t want to be on the ventilator anymore and moved him to Bubble CPAP. Just like that, one of Andy and my BIG goals was being accomplished. I understood the next few hours would be touch and go – if he didn’t take to CPAP well, he would go back onto the ventilator (and the tube would have to go back in). None of us, Nicholas included, wanted that tube back in. Thankfully, Nicholas did just fine on CPAP. The respiratory therapy team removed any sign of a ventilator from his area in the NICU and we moved forward on the CPAP machine.
Andy made his way back to Florida on Thursday evening – just in time to see Nicholas end his 1st successful day on the CPAP machine, and see our him with one less tube and no more IVs. During our bedtime routine that evening Andy got to witness Nicholas’ 1st weight gain all week – we were now up to 2 pound 14 ounces. That was a huge gain for us considering at the beginning of the week he was NPO (no food) during his transfusion and was also on antibiotics for 4 days.
We spent much of the weekend watching Nicholas succeed on the Bubble CPAP machine and becoming more & more alert than he had been in weeks past. We know he cannot see us clearly right now but it is simply amazing to watch him follow our voices when we talk, read, and sing to him. We continue to work with him through the massage and touch tools that the occupational therapists have shared with us and are happy to see his responses growing stronger.