Roller Coaster

Roller Coaster is really the best way to describe our experience in the NICU.  Our emotions change moment by moment.  It can be easier to feel positive and hopeful when the doctors give good news and then easy to feel discouraged when Ainsley has several spells (breathing & heartrate) in a row or a tough afternoon. 

Yesterday was one of those days.  It started out positive because she had had a pretty good day Tuesday and when we came in yesterday morning we heard the night had been okay.  Then that morning and afternoon she had a difficult time, she had quite a bit of apnea and bradys.  As we have mentioned before this is one of our hardest things in the NICU.  Whenever her breathing or heartrate dips below a certain point an alarm sounds.  Hearing this alarm over and over while watching the nurses come in to help her is exhausting.  We can feel our stress level rising as we sit there. 

We had already planned on going home to get the other car and bring it back to the hospital.  (Brandon went back to work today (Thurs.) for the first time so we needed a car at the hospital for me.)  It was a good break from the alarms to go home.  Still, it was crummy to come back and hear that she had a rough afternoon.  After we got back and the nurses had filled us in, they decided to call the NNP to come and look at her. 

Our NNP for the day, Cindy, listened to her lungs/breathing and the discussesd it with us.  As you may have read in an earlier post they had turned her CPAP down to four.  When we talked with Cindy she said that Ainsley sounded good and she would come back at 7pm before she left and check on her again.  At that point she would decide whether or not to turn her CPAP back to 5.  She of course reminded us that in the NICU babies usually take two steps forward and then one back (the roller coaster!).

So, when we came back after dinner we saw that her CPAP was still set at 4.  So, the decision for the night was to leave her at 4.  When we were back for the evening she rested pretty well and that helped calm our nerves a bit - at least it made it somewhat easier to leave a go to bed.

We know in our minds that our girl is "acting her age" as the doctors say.  If she were still in utero she would not be expected to breathe so of course she is going to have trouble with it by coming so early.  But just because we "know" that our hearts still hurt everytime she struggles to learn.

But, we remind ourselves to focus on how she has grown and all the positives...so here is an update on that:

• She tipped the scales at a little over 3lbs last night - YEAH, good girl!!
• She is on full feeds now - this means she gets 160mL per kilo
• She is tolerating her fortified feeds well
• She is more active and fiesty - it is neat to see that little personality come out :-)
• Her head ultrasound looks good - that means no bleeding - very encouraging

Go Ainsley!!  We love you dear sweet girl!