Week 4 – Hurry Up & Wait … (& Our 3rd Transfusion)

This week was much of a “hurry up and wait” week for the 3 of us. Nicholas remained on the non-invasive NAVA ventilator. At the beginning of the week, he was receiving moderate support from the NAVA and was breathing comfortably at 36% oxygen. (To give you a comparison on what Nicholas was breathing versus what you and I breath – room air that you & I breathe is 21% oxygen).

Nicholas needed to get stronger breathing on his own so that his ventilator support could decrease and so that he could begin to breathe on less oxygen until he was breathing the 21% oxygen levels you & I breathe. We spent much of the week repeating our mantra “Deep breaths, buddy.”, as Nicholas was pushed to breathe on less oxygen. It was, for the most part, a quiet week for us. The doctors’ orders rarely changed all week long – Dr. Singh & Dr. Abril maintained the same thoughts each day: “Let’s keep him on the NAVA ventilator and see what he can do”.

But, come Saturday evening that all took a change. While on a short break from the NICU for dinner with mom & dad, I received a phone call from the NICU to prepare us for what we would be walking into upon our return. Nicholas’ blood work from earlier that day showed a decrease in his hemoglobin counts – he would need another blood transfusion immediately. They were going to start prepping for the transfusion right then and would be starting as soon as blood arrived.

Upon the news, we quickly left the restaurant and got back to the NICU (Andy finished his dinner in the car on the way back to the NICU). Once at the NICU we found them preparing to start running IVs. I was happy they hadn’t placed the IVs yet so I could be there to hold him as they searched for 2 places in his arms to set IVs (one for the transfusion and one for the fluids he would need while being transfused). After an hour and a half, the IVs were in and the transfusion began. Andy & I were an exhausted mess but Nicholas never cried – he just slept through the whole ordeal.

The transfusion ran for 4 hours overnight. As much as we wanted to stay until the transfusion was complete, we had to get home to get Andy packed as he had a flight to catch early Sunday morning back home to NC for a few days. I will admit that even though we weren’t there, we called and checked in all night with the nurses and, as a result, didn’t get much sleep anyways.

The next day, as Andy headed to the airport and I headed into the hospital, I was greeted by one of the neonatologists, Dr. Sultan. He was there to explain to me that when they tested Nicholas that morning to see if his hemoglobin count had risen (which it had – the transfusion was successful) that he did find an elevated count that led him to believe he might have contracted an infection. So, we began week 5 with several days of antiobiotics to kick any infection he may have (more on this to come).

During all of this, we find ourselves looking for reasons to laugh and places/situations that bring us comfort. Wednesday night brought us that:

While on a brief break from the NICU, Andy and I had dinner at a local bar- Bayside Grille. It’s one of those places that has lots of “regulars”, good food (nothing to fru-fru), and happy hour specials that make all of this dining out a bit easier to digest.On this particular night when we arrived, there was what sounded like a polka band set up and “rocking out” as (I guess) polka bands do. I wasn’t particularly in the mood for a band; a quick dinner so we could get back to the NICU was the top item on my menu. But, as my mother likes to tell me often “Adjust, darlin’. Adjust.”.

As the band played on though, a familiar tune started up. Andy caught it before I did and said, “Listen- do you know what song that is?”. I tried to slow my mind from its constant state of worried analysis to hear what song was being played.
As the song began to come into focus, the whole bar began to join in on the band’s fun singing “You Are My Sunshine.” It was such a sight watching large men drinking draft beers, singing, laughing, and enjoying the lullaby we sing to sweet Nicholas each night. It warmed our hearts and gave us the boost we needed right when we needed it.

Week 3- PICC lines, IVs, De-Sats, & More Lessons in Patience

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.