4:00am I'll just wake up now and not sleep any longer.

All I ask if for a night nurse that meets the following qualifications:

1. Doesn't sleep on the job.
2. Doesn't eat all my food.
3. That is a clone of 1 of the 3 awesome night nurses we have that can't fill all our open shifts because they are so super duper that everyone wants them to be their night nurse!

Is that so much to ask?  

I realize that Dan and I were excused from the typical overnight lack of sleep due to baby needs thing the entire time Lydia was in the hospital.  I realize that it might not be a lot to ask for us to do it now on our own.  It is a little tough though.  

So, why a night nurse?  Lydia goes to bed around 9pm and sleeps through the night.  

Now you're really asking, why a night nurse?  I'll explain.

Lydia gets fed at 9pm, 12am, 3am, 6am, and so on via a feeding pump and tube.  She needs meds at 4 of her 8 feedings.  She needs to have her feedings stopped and her tube flushed 2 hours after every feeding.  Lydia is a diva and hates a wet diaper, so there is no letting those go any longer than the time it takes for the little yellow diaper line to turn blue.  You and I have secretions in our lungs that go through our trachea to our mouths and we either spit them out or swallow them.  Lydia has the same secretions, but she has to cough them out through her trach.  This can be difficult for her to do, especially overnight when she is sleeping and not alert enough to realize what she needs to do.  This can lead to coughing spells, her trach needing suctioned, for her to be repositioned or moved to more of an incline.  Lydia also sleeps with an apnea monitor and a pulse oximeter.  If she has a pause in her breathing, it alarms.  If she breathes too rapidly, it false alarms.  If her leads or belt is loose and she moves, it false alarms.  If the memory gets full, it beeps a bunch too.  The pulse ox lets us know her pulse and her oxygen saturation.  If she's coughing or kicking or happy and squirming, it can alarm.  If she is coughing, needs to be suctioned and may have a plug, it can alarm.  If she's really mad because her diaper is wet or mom and dad are doing trach and g-tube care, it can alarm.  She also wears a humidifying mask when she is sleeping to provide moist air for her to breathe and that water canister has to be filled about 4 times a night.  Also, it sounds like an air compressor.  

So, all that said, is it really that bad?

Nah, not really.  It's Lydia.  We'd do anything for her at any time of day.  We just really love it when we have some help.  Add all the stuff up above up and you get approximately 20-30 times you are up off the couch checking her.  It may be just watching her to see that she's breathing, it may be a diaper.  Between all those times it's just really tough to fall asleep to the sounds of the air compressor.  After so much middle of the night awakenings, you end up being awake and alert and you start to get anxious.  Anxious while listening to her breathing or coughing.  Anxious while watching her monitor lights beep or watching her pulse ox numbers fluctuate.  I'm whining a little bit, but I also think some people may want to understand.  The hardest part is one of us sleeping on the floor, the other sleeping on the couch, and both of us playing possum with the feeding alarm goes off on our cell phones at 3am. 

"Dan? Are you up?"  Kinsley whispers from the couch soft enough not be heard over the humidifier.  Dan doesn't stir, he's too still actually.  Kinsley catches his eyes flutter.  Kinsley rolls over to fake sleep and bury her head in the pillow.  Dan peeks over the coffee table to see if Kinsley saw his eyes flutter.  Both lay still a little longer until one begrudgingly assumes the role of adult parent to Lydia.  Once either parent is up and tending to her, all they have to do is look at that little face to know they would do this every single night if necessary.  Those cheeks make it all worth it!