Ruby Hope McKee Starling

Please check out Chris's post from last night for a cute picture of Ruby on the high flow.  Ruby had a good night and was only breathing hard (tachypnic) after her feeds, which is normal.  Tachypnic means she is taking more than 70 breaths per minute for more than twenty seconds.  It's very normal for CDH babies to do this when physically stressed, which could be caused by eating. Ruby has been peaking in the 70's which is good for a CDH baby.  Last week when she was taken off high flow and put on CPAP she was consistently taking over 100 breaths per minute and getting really tired.  We just have to remember that Ruby doesn't have full sized lungs and will breathe a bit faster and shallower than a baby without CDH. Here's Ruby letting us know how much she hates the CPAP mask.

Here she is letting us know how much happier the high flow makes her.

Now that she's back on high flow the next step respiratory wise will be low flow oxygen cannulas then room air.  She can go home on low  flow if absolutely necessary, and some CDH babies do.  We are hoping that Ruby won't need too, but we'll just have to wait and see. 

The morphine and versed are being weaned pretty aggressively.  She's down to 120 from her maximum dose of 300.  Today they are switching her from IV to oral doses of both.  We've been warned that since she is still on such a high dose, this transition can be rough.  The whole weaning process can be rough.  She will be going through withdrawal.  While they will do everything to make sure she is comfortable and not in pain, we will hit some bumps.  We've also been warned that weaning could take awhile, as in weeks.  If necessary she could go home on methadone, but again we don't know if this will be necessary or not.  As usual Ruby will tell us what she needs.

Then finally we have all the feeding issues to deal with. Right now she is being feed through an NG tube.  This tube puts the food directly in her stomach.  She doesn't have to swallow or suck to get it.  Meaning she doesn't have to expend any energy to eat.  Once she is on low flow oxygen we can (and will)  start to work on feeding her with a bottle and/or breast feeding.  Most likely she will be fed through a combination of all  three things for some time.  She will need to be consistently gaining weight feeding by mouth before we can go home.  Also feeding by mouth is when the reflux issues usually surface in CDH babies.  Almost all CDH babies have issues with acid reflux.  We are not expecting the feeding to be an easy road.

All in all we feel very relieved that Ruby is doing so well.  These last hurdles, while time consuming and frustrating, are nothing compared to what she has already overcome.  We have gone from daily conversations preparing us for the worst to being on the slow road to home.  We couldn't be happier.  We are being cautious.  The weaning of the meds can cause some respiratory distress.  While we would hate for Ruby to be put back on CPAP, it might happen if she needs more support.  For now though she's doing well on the high flow and tolerating the weaning.  As we all know this can all change in a second. 

We are guessing that we are at least 4 weeks from being discharged.  We wouldn't be surprised if it was more like 8.  We'll just have to wait and see.  For now, here are some really cute pictures of Ruby from earlier this week when she still had the CPAP.