Marco's Journey

4 months, 1 month adjusted.  We’ve hit two weeks in the hospital with a common cold and we’ve only just removed his breathing tube. Now we wait another 1-2 weeks as they slowly wean Marco from CPAP oxygen to high flow to regular to none.  I should be used to this by now, but somehow these past two weeks feel longer than the previous 15 he’s spent in a hospital bed. He’s been alive for 19 weeks, he’s been home only 2 of those, and due to my split life visiting my eldest all summer, I’ve only been with him for 5 days. 5 freaking days.  “He’s where he needs to be”, “he’ll be stronger soon”, “he knows you’re there and feels your love”, “he’s got the best care possible”, “this too shall pass,” yada yada yada. These well meaning words of comfort have stopped working to give me peace. No words can give me back the first 4-5 months of his life. The first smile, giggle, roll that should have been. The joy of bonding with my last baby during maternity leave. I’ll be lucky if I get...

Discharged Friday 7/30. Readmitted Wednesday 8/4. My boy can’t catch a break. After rounds of tests from every team under the sun, we were discharged with nothing more than a feeding tube. Brain, heart, lungs, etc all came back clean. We are still waiting on genetics to see if there is a disorder that can explain his inability to eat, but aside from that we were cleared. Home for 5 days, 3 of which I was away, so I was with him for only 2 blissful days when he decided to stop breathing. Ok, 1.5 blissful days. Followed by one of the worst evenings of my life. He was eating OK, not great. Maybe 40-50% of his feeds orally, the rest through tube. We were doing well, thinking it was only up from here, until Wednesday. He sounded really gunky, like there was a lot of extra fluid in him. Then he started eating less, coughing and crying in pain intermittently for about 4 hours. Clearly in pain and not happy, we removed his tube thinking maybe it needed to be replaced. We decided to put a new t...