The New Normal

I thought that once Alexander started having some good days, we would just have more and more good days. Instead, what I am learning, in the NICU it's two steps forward and one step back. 

On Thursday, after 2 days without his ventilator tube in his chest, he had two "spells," situations where his stats sank and he couldn't come out of it on his own. Normally they have to "bag" him, meaning they take a rubber bag and take manual breaths for him so his heart rate comes up, his oxygen levels become normal and he starts breathing again. So, the chest tube went back in, so he doesn't have to work so hard. This was expected by the doctors, but I was hoping that he could do it on his own. They also said they were pleased that he was able to breath on his own for so long. Also on Thursday, they thought he had an infection and started him on more antibiotics. One step back...

Friday we were able to head to Iowa City - it was a two hour drive due to ice, traffic and accidents - but it was worth it! Alexander had a good day, I got to hold him again and he was awake for some of our visit. He's on a different ventilator than what he started on so I am able to hold him when we visit. He was very stable and was doing well on the ventilator - good oxygen levels and very little spells. The nurse practitioner even mentioned that if he stays steady and stable, he may be graduating to Bay 2-3 soon. Bay 1, where Alexander is now, is for the sickest babies. They only move to Bay 2-3 if there is a sicker baby that needs the room. This would be a good sign! One step forward...

Saturday was an even better day. The little man was eating 17 cc of breast milk every 3 hours (or about a half ounce). He's up to 2 lbs 11 oz! He was very stable and the cultures came back negative so they were stopping his antibiotics. All his fluids are now from his feedings so if he stayed stable, they planned to take his PICC line out. His oxygen was down to 40% and his ventilator settings were good. A second step forward...

On Sunday, we had our step back. Alexander had another bad spell that he had to be bagged to come out of. His oxygen was up to 55% (they like it under 50%) and his ventilator settings were turned up. They are running more cultures to see if he may have another infection. The nurses are also reporting that they are hearing the murmur back in his heart - we don't know yet what this may be. We will find out much more tomorrow during rounds. 

It's hard to not dwell on the down days or the steps back. All the love and support of our family and friends has been huge to keep us focused on the steps forward and the positive things we are experiencing. 

Here are some of our latest photos of Alexander and some of playing outdoors with Andrew (his first time playing in the snow!)! These help us focus on the good times in our lives and remind us how truly lucky we are!