This week was a hard adjustment for me. On Sunday, Andy left to travel back home to NC for the week. He was needed back at the office for a few days, and our home & dogs needed some attention. His time back in NC meant Nicholas and I were 1:1 most of the time in the NICU. Thank goodness for my mom & dad who were on hand everyday to get me to the hospital, have dinner with me, and help with our bedtime routine in Andy’s absence.
When the nurses learned Andy would be away for a few days they gave us a great idea that we tried (and loved!) and would recommend to everyone in our situation in the future. When mommy or daddy can’t be at the bedside, FaceTime is a great resource. Each night my dad would get Andy on FaceTime and place him face down on the isolette so he could watch and hear everything that went on during our bedtime routine. While he wasn’t physically there with us he was able to ask questions, hear the latest vitals, and cheer me on during diaper duty.
We started this week much the way we ended week 2- on the NIV NAVA – a less invasive breathing support system, and on some meds and IV fluids to help Nicholas gain weight through nutrition support.
During much if the week, Nicholas struggled to breathe. A lot. We went from worrying about bradys to focusing on “de-sats” or “desaturations”. A de-sat occurs when a baby forgets to, or cannot, breathe and his oxygen saturation level drops quickly and without warning. As Nicholas was learning to breathe with less assistance than he received while on the oscillator (which essentially breathed for him before) he struggled to breathe with strength and consistency. His breaths would be quick and shallow and when you looked at him it almost appeared as though he was winded from running a race. I spent much time by his bedside watching his saturation levels go up and down and every time the alarm would ring I would find myself saying “Just take a deep breath, buddy. Deep breath.”.
Nicholas did begin to respond more and more to us this week than he had in the past. He began regularly opening both of his eyes at the same time. While I know he cannot see anyone or anything with clarity just yet, it’s wonderful to see his eyes open and look around.
On Monday, one of our doctors, Dr. Singh began to ween Nicholas from the IV fluids while he continued to increase his feeding amounts. As he continued to hold his feelings down without trouble, it was time to begin pulling him off the IVs and let Nicholas and the breast milk work together on their own. By Wednesday morning, Nicholas was pulled off all IV fluids and placed on a multivitamin he takes through he feeding tube during one of his afternoon feedings each day.
By Thursday morning, we hit another milestone for Nicholas – he had his PICC line removed. This meant the doctors saw no more need for large blood draws or for medicines that would need to be administered through his PICC line. I was happy to be able to say good bye to the PICC line machine that hung by his head and to the large lines that ran through and around his left arm.
Even though we made strides in removing more equipment from Nicholas’ care, he was still struggling to breathe. He remained on a medium level of support on the ventilator and had increased trouble breathing during each touch time and simple diaper change he experienced. The doctors continued to offer more support through increased oxygen and experimenting with his position to find him the most comfortable position.
During this entire week, I got to practice the fine art of trying to be patient. And I say “try” because it wasn’t easy for me. Each day I would come in to the NICU to see not much had changed in his support levels. I would spend much of the days and nights watching him struggling to breathe and repeating my mantra “Deep breaths, buddy, deep breaths.”.
Andy arrived back into Florida Thursday evening about dinner time. It had been a long day of work and travel for him but I was happy to have my husband back. He got to see Nicholas without his PICC line and see him continuing to open his eyes and look around and squeak out a smile. He quickly joined in on my never ending mantra “deep breaths” with me though as he saw our son struggle to breathe.
One of the most amazing things to witness (this week in particular) was Nicholas’ smile. Even though he was struggling to breathe and had some tough days, he has a way of flashing a smile that just says “give me some time. It will get better.”. That smile helped us through much of the week and the weekend as he continued to learn to breathe.