Two Steps Forward, One Step Back

We hit our first set back a couple of days ago. The day they decided to move Elijah from CTICU to CV Acute, I thought his breathing was odd. It sounded labored and incredibly fast. I asked the nurse and doctor about it and everyone said it was normal newborn breathing. When we got to CV Acute, I kept hearing the "strider" as they call it and the quickness.  It seemed to be becoming worse. Over the next 24 hours, I kept asking everyone who came in to listen to his breathing and they continued to reassure me and tell me it was normal. I knew from doing my research that his breathing may be a little faster than typical babies, but this was heartbreaking. I was giving him his bottle and he was trying so hard to drink it, but he was struggling to breath at the same time. It was only filled with 10cc and it seemed to take all of his focus and energy to drink it. I panicked and didn't know how such a small, determined little baby could continue trying to eat when he could barely breath. This continued overnight and into his next feeding. My heart was breaking and I couldn't imagine forcing this on my little baby every time he needed to eat. By the time Dion got there the next day, I was beside myself. Thankfully, the charge nurse of the day shift finally listened to my concern. She was determined to get someone to listen to her.

The next thing I knew, she had called a doctor and had a nurse practitioner in the room listening to his breathing. The doctor came and they decided that indeed it wasn't normal newborn breathing and something must be wrong. They did xrays and discovered that he had fluid in his lungs and this was causing the labored breathing. I was so relieved that they finally did something to help him. They stopped all feedings and put him on even more diuretics to help clear the excess fluids. They kept his oxygen the same and allowed him to rest.  On top of that, his white blood count was trending upward and they suspected an infection.  They already had him on an antibiotic and they added another. The good news was that he had yet to have a fever. They then decided that they needed to remove the central line (the IV to his heart) because it could be the source of the infection.

The good news in all of this is that the doctors came in today and said that his xray looked much better. His breathing, although still quick, was greatly improved, and his white count was finally starting to lower. They let me give him a bottle today for the first time in several days.  The nurse filled it with 40cc of fortified breast milk and told me I had 15 minutes max to get him to eat. What was left, she would feed him through his ng tube. She explained that after 15 minutes, he will actually be using more energy than he is getting from the milk and they want to prevent that. He ate 31cc and probably would have eaten more, but I couldn't get him to burp (its very scary to try to burp a baby who has recently had his chest cracked open).  I was a little disappointed that I couldn't get him to drink it all. However, the nurse came in and was thrilled. She said that typically, hypoplasts will only eat about 6cc on their first whole feeding. That little boy has to be one of the most determined, strongest people I have ever known.

All in all he is doing well. A heart doctor came in this morning and said they were very pleased with his progress. He explained that these babies typically spend 3 weeks or so in the CTICU and then another few weeks in the CV Acute. On average, after the Norwood (his surgery), they spend 35 days in the hospital. Its just hard when its your baby. It's only been a week and a half since his surgery, but when it's your baby it feels like forever. When it's your family that is separated, it seems like a lifetime. This is some hard stuff. I think that little baby may be the strongest of us all.