Home from the NICU

Our baby boy has been released from the Neonatal Intensive Care Unit! We are so happy to be home as a family again, though everyone is over-exhausted and very out of our just-barely-established routine.

I didn't get a chance to fill you all in on what had happened, so here's a synopsis of the events of the last week. This all happened after several days at home with the twins, during which everything seemed to be going fine.

Our Baby Boy stopped breathing Friday night, the 19th (the twins were 10 days old at that point). We were out of the room when it happened-- we heard a noise on the baby monitor and when I got there he was completely blue/purple and unresponsive. Sylvia and I worked to revive him during the FOUR MINUTES we were ON HOLD with 911(!!), and eventually got him to breathe (though he stopped breathing 3 more times after that). EMS arrived and worked on him some more, and then they transported us to the hospital by ambulance.

We had called my mom (who had been in town visiting since the twin's birth) when we were on hold with 911, and she arrived at the house just as we were getting in the ambulance. I quickly handed Baby Girl off to my mom and Sylvia and I rode with our son to the hospital.

When we got to the hospital they started running lots of tests to check for infections and whatnot. They had a terrible time trying to get an IV started-- the poor baby got stuck over 10 times by both the ER nurses and a nurse they called down from the NICU before they gave up and decided to wait to place the IV up in the NICU. They had trouble drawing blood, too, finally resorting to a series of artery sticks to get minuscule amounts of blood for the tests. He also had to have a spinal tap to test for meningitis, and it took them three sticks to finally get spinal fluid for the test. Needless to say, it was a traumatic couple of hours.

After several hours in the ER, our boy was admitted to the NICU. His temp (which had been low when we got there) had stabilized, but he still looked awful. He was clearly completely exhausted from the events of the evening. Sylvia and I stayed with him, of course, all night and in to the next day. After many hours, he was willing to eat a bit, so I pumped every feed to provide milk for the next feed.

Over the next several days, I pumped and gave him as much breast milk as I could (I am having supply issues trying to keep up with the two babies, but that is a whole other post... sigh). Baby Girl got stuck having formula almost exclusively while we were in the NICU with Baby Boy, particularly while we were still concerned that he may have an infection. After the first day, I did try to make it home at least once a day to pump and leave some breast milk for her, but it wasn't much. I felt awful, not being able to provide for my babies.

Baby Boy's NICU time was spent working through a list of what could have caused him to stop breathing, slowly eliminating one cause after another. They checked extensively for signs of infection (negative), watched him for evidence of seizures (there weren't any during the time we were at the hospital), and ran a 12-hour sleep study to identify episodes of stopping breathing.

Once he was eating again, we noticed that he'd developed a new symptom we hadn't seen at home. He would routinely throw up after eating, and when he threw up, he'd pass out. His eyes would roll to the back of his head and he'd go completely limp. One of the neonatologists hypothesized that a nerve was being triggered by the spitting up, and started him on Prevacid to see if that would help. It took several days to kick in, but now when he spits up (still pretty regularly, unfortunately), he doesn't pass out. We never got final confirmation about what caused him to stop breathing that night, but I suspect it was that he spit up, passed out, and choked on the spit-up.

They released him Tuesday night (the 23rd), on a monitor that checks his heart rate and breathing, and alarms if he stops breathing or if his heart rate is too high or too low. He wears the monitor 24/7 (except at bath time), and we have quickly become adept at carrying the machine around the house as we do things like change his diaper and feed him. He hasn't had many daytime alarms, but he has had several nighttime alarms for stopping breathing. The data on the machine will be read the second week of April, and I am eager to see what they find out.

Many thanks to everyone for all the thoughts and prayers! And my heart especially goes out to those of you who have had babies in the NICU-- I thought of you all often while we were there. You are amazing parents!