Starting to see the light (Day 51)

I am liking this calm after the storm.  Lily is now off of CPAP and on a regular nasal cannula!  6 days after she was extubated and she is already on a nasal cannula.  This girl continues to amaze us and the doctors!  Over the course of the week she has gone from 1 liter of flow and is now down to a half liter.  From a respiratory standpoint she is doing phenomenally.

Her morphine has been weaned every day this week.  At the beginning of the week she was getting a relatively high dose every 4 hours.  The dosage was eventually decreased and then the doses were spaced out.  Yesterday she was getting a small dose every 8 hours.  Today that has been changed to every 12 hours.  If she tolerates that change well, the next step is once every 24 hours and then no more!  The next step after that will be to get her off of her twice daily ativan.  The last time they tried to change the ativan to once a day, she did not tolerate it well at all so hopefully this time around (since she is off fentinyl), she will do better.

We also started trying feeds by mouth starting with nursing before trying a bottle.  The first couple of days were awful with her absolutely refusing.  The third day she latched for 5 seconds and the fourth day she latched for a whole 30 seconds.  Hopefully if she can learn to nurse I can kick the pump to the curb.  She is continuing to tolerate her feeds well with very little, if any, reflux.  That might change once she is taking full feeds by mouth but we will take this right now.

A couple of problems have cropped up over the past week.  As a result of being on ECMO, she has a sore from where either a portion of the cannula sat on her head or from the sutures that were holding the cannulas in (not quite sure).  It was healing fine but the scab that was covering it fell off.  As a result, the skin was open and got infected.  She is on IV antibiotics right now so hopefully that will clear up soon.  It is already looking so much better.

Also, Lily is not gaining weight.  Her weight has been the same for the past 2 weeks.  She will make little gains, then she will lose and so on.  We are now trying a hindmilk intervention to try to get her to gain some weight.  It could be that since she has been extubated, she is now having to breath on her own and, thus, burn more calories.  Hopefully adding in the additional calories from hindmilk will help her gain.

She had a repeat echo recently to reevaluate her VSD.  From the echo report her VSD is still there and is moderate in size.  We don't know if it is going to close on its own or if this will be something that has to be repaired surgically at a later date.  The best thing is that she is no longer showing any pulmonary hypertension.  The PPHN is what landed her on ECMO so thank God that is gone.  Her right ventricle is still showing the side effects of PPHN with some hypertrophy (increased size) but it is mild.

We are also going to have some genetic testing done to see if she has some kind of microdeletion that could have caused the CDH.  She has a few things that could indicate some kind of genetic mutation.  She has CDH, a VSD, trouble gaining weight and an ear tag.  It will take a while to get those results back but I am hoping for no mutations!

Lily is also going to have an MRI this week to make sure she has no major side effects from being on ECMO since it can cause brain bleeds.  When they did her head ultrasound on ECMO she had a resolving grade 1 bleed but they think that happened at birth and not from ECMO.

If Miss Lily keeps amazing all of us and kicking CDH booty, we should have her home soon.  How soon, we don't know but there is a light at the end of the tunnel now!

And seriously, I will eventually get to updating her early days.  I still haven't even told the story of her getting off ECMO, surgery and early post-surgery.