great expectations

Yesterday's visit was rough, not for Lucy, but for us.  Lucy has actually been doing really well.  We arrived at the hospital around six to a sleeping Lucy.  Her respiratory therapist came in shortly after for her therapy.  She was not really cooperating, so it was a short session.  But after that Lucy cried on and off for about two hours and nothing Mike and I were doing seemed to console.  We forget that although Lucy is a heart baby and we have to be careful with certain things, she is also just a baby. It's hard for us to realize she could just be crying because she's tired or fussy, not because she's in pain.  Eventually the nurse came in to help us to get Lucy calm.  It took propping her up in a semi reclined position.  After Lucy was finally asleep we were just overwhelmed and feeling a little helpless.  Cue my tears.

  I have always said when I become a mom, I didn't want to be a parent that would run and pick up my baby every time they cry.  Mike and I even had some conversations after we found out we were expecting about taking a weekend to let the baby cry.  Friends, who were new parents, had given us advice about this method and recommended it.  So call it karma, or whatever you want, with Lucy we cannot do that.  We have to console her immediately by any means because she is not able to handle extended periods of being upset.

On Tuesday afternoon Lucy's breathing tube was removed.  She barely had a voice, but it was so nice to hear again.  Since then the doctors have been decreasing her pain and sedation.  Like we have said before, Lucy needs to be awake so they can start assessing how she handles things.....diaper changes, feedings and therapy.  The reason last night's visit was so stressful is we keeping thinking back to the last time she coded and we just want to make sure we are doing everything we can to help her.

We finally see that cute little mouth again!

  This morning during rounds, I asked about the agitation last night.  Dr. Penk assured us that Lucy is not in pain and it was not due to withdrawal from decreasing her pain medicine.  Since she is not as sedated, she is more aware of discomfort and irritation and is showing us.  Both her drainage tube have significant output, we hope that this decreases so they can be removed and Lucy can be more mobile.  Dr. Penk said that her heart function is much better post-surgery and she is making good progress.  All this information provided a little peace of mind.  Lucy also took to her pacifier right away and her sucking was strong. We didn't know what to expect after being intubated for such a long time.   Our nurse this morning told me something else that we didn't think about.......they are around these kids constantly and we need to utilize them for tips and tricks on how to calm Lucy.

We are constantly have to adjust our expectations and I'm pretty sure that is not going to change anytime soon.  As I am nearing the end of my leave, we ask for prayers for a clear plan for Lucy's care.  Also for her ongoing recovery and continued strength for Mike and I.