Medicines and Oxygen and Feedings, Oh My!

Lily came home on a lot of medications-well, I guess not a lot, but there was prevacid, reglan, lasix, aldactone and caffeine, all were given at different times, different amounts, multiple times a day, etc…  Type-A mommy to the rescue.  I can make a mean chart, pre-fill oral syringes, and check off boxes like no one’s business! All medications lined up with feedings, so every three hours Lily ate a bottle and took her drugs.

Because Lily had to stay longer in the NICU due to feeding problems, we were forced to devise an interesting feeding position for her.  Before having a bottle, Lily had to be tightly swaddled and then placed upright in this foam infant chair that they ordinarily use in radiology to prop up and hold babies so they can force-consume barium.  The hospital lent us the chair.  So every three hours we swaddled Lily, checked the chart and administered medication, fed Lily a bottle, and watched her oxygen stats lower, listened to her choke, and then covered our ears as her monitors shrieked with disappointment.

What monitors?  Lily came home on oxygen, but only ¼ liter, which is pretty much the lowest oxygen level you can get.  We were all pretty sure that she didn’t actually need the oxygen, but we followed doctors’ orders. She also came home on 2 monitors-one monitor measured her oxygen saturation and the other measured that she was actually breathing (an apnea monitor).  So every day we reattached her leads and listened to the false alarms.  Normally the lead slipped or came lose or her legs and feet were moving too much for the system to register…but while Lily was eating, there were no false alarms.  When she choked, it registered.  When her lips started to turn purple, it registered.  And it was loud, like those scary emergency alert sirens that go off on our cell phones and scare the bejesus out of us when we’re driving (it’s nice to know about the flash flood warning, but I don’t want to get into a car accident because of it).  So you’re holding your tiny baby, she has three wires dangling from her body, they are constantly falling off because she’s a very active little girl, plus the oxygen tube, you have to swaddle her, and then calmly watch her choke while you feed her.  Yeah, parenthood is a blast!  And don’t forget about the thickened feeds-so preparing a bottle wasn’t the easiest thing in the world. 

We adapted.  Quite frankly, we didn’t know any different, and the hubby and I made jokes about how easy the next one would be since Lily was so labor intensive.  But it was nice to have the monitors-it was like added security because you knew that she was breathing and that everything was alright.  And then the monitors didn’t work.

I was just sitting on the couch looking at Lily-she was sitting in her infant seat on top the coffee table, and smiling and looking at me and then, she coughed.  It was just a little cough, nothing out of the ordinary and certainly nothing to be alarmed by.  And then her lips turned blue, and I don’t mean the inside of a blueberry which is really purple…I mean blue, like a sunburnt smurf.  I picked her up and started whacking her back so hard-I tried to remember everything from infant CPR, so I kept whacking her and waiting for her to cry because if you can cry then you can breathe.  I screamed for my husband but he was upstairs taking a well deserved nap and he clearly couldn’t hear me because he didn’t come running down.  I kept screaming and whacking for what felt like an eternity but was probably really 30 seconds or so, before the hubby came bounding downstairs.  The alarms never went off.  He took Lily and I collapsed into hysterics.  She was fine, clearly she was fine, she was breathing and her color was completely normal, but why the fuck didn’t the alarms go off? This was the reason we had them.  What if this happens in her sleep? I can’t stay awake 24/7 to watch her.  She’s going to choke to death in the middle of the night and it’s going to be my fault because I can’t stay awake.

We called the pediatrician but it was late at night and we got the service-they assured us that someone would get back to us.  Thirty minutes later we called again, and again we were assured.  Another thirty minutes, same drill, same result.  We drove to the Emergency Room-I hunched over Lily in the backseat while my mother drove and my hubby tried to stay calm.