Wednesday, November 26, 2014

Just Breathe

I did not realize how much people relied on my blog updates to hear about what's going on in Miss B's life, so I apologize for the delay. After we returned home from her most recent hospital stay, Brayleigh spent the first few days at home off of her oxygen. She seemed to be tolerating room air just fine. We have her connected to a pulse oximeter machine so that we can always know how her oxygen saturation levels and heart rate are reading. We always want to see 100 on the oxygen level (top number) or at least 90 to feel comfortable that she is taking in all of the air that she needs.

A few times, though, we got concerned because her oxygen level had begun to dip.  Occasionally, it dropped into very dangerous territory. Brayleigh would let out a screeching cry as this was happening. Chris and I repeatedly told our baby girl to "breathe" as we tried to get her stimulated again by gently shaking her or holding her up on our chest.  Eventually, she would work her way back to 100, but those few seconds of what appeared to be our precious daughter losing oxygen were the most terrifying.  So we put her back on her blow-by oxygen just in case she continued to have problems.

After discussing this with our in-home nurse, she came by and asked us a series of questions - one was whether Brayleigh had turned blue as her oxygen levels dipped.  The other question related to the frequency of her bowel movements.  I didn't quite understand the latter, but it turns out the the sudden dips in her oxygen could be related to constipation and or acid reflux, and may not be a true read of respiratory distress. She also did not appear to turn blue during these times.  A visit to the pediatrician's office also concluded a similar diagnosis.

As parents of a baby with ongoing medical needs, we become overly vigilante and often take on the role of medical mom and dad. From taking her temperature throughout the day, jumping up at the sound of alarms going off if her oxygen or heart rate seem out of whack, or grabbing the stethoscope to hear if her feeding tube is in the right place in her stomach, we are constantly on edge. We even had a wonderful caregiver (with a nursing background) come to the house for the first time to watch Brayleigh for a few hours, and she literally sat in front of baby girl the entire time, jumping up every time she heard the slightest cooing sound coming from her mouth.

Although we have a lot of equipment and information at our fingertips and have a heightened sense of awareness in case something goes wrong, sometimes we just need to breathe our own selves and read into what Brayleigh is trying to tell us.  Are her cries showing that she is in pain or does she just want to be held?  Instead of always taking her temperature, can a kiss on her forehead give us a clue as to whether she is too warm or too cool?  This time, Brayleigh's alarming cries, not necessarily the equipment, signaled her discomfort, and the erratic swings in her oxygen levels have eased a bit. We have to take a step back and remember all that our baby girl needs us to be are loving parents - a typical mom and dad equipped with those general instincts to know when things are right or not feeling right at all.

1 comment:

  1. I have a son with full trisomy 13 I would love to get with you and share some groups and info.