Still in CICU

Our Adelina is having a rough patch.  She woke at 6 am with a fever of 103.  It took several hours but they were able to get it down, when I left the hospital they were giving her tylenol to bring it down from 100.  All the blood tests and cultures have turned up nothing.  She has been on room air at home but is now needing oxygen.  The combination of the fever and oxygen are keeping her in intensive care.  She just looks so miserable.  They've discussed possibly going home tomorrow but in the same breath sending us to the "floor." Praying that she improves with rest.

Ready for rest

Adelina's heart cath went really well!  We are so grateful for all the prayers offered on her behalf.  The narrowing ended up being a pretty big deal.  One side of the narrowing was around 80% pressure and the other 50% they should be the same or else her heart is working too hard.  Also, her gut wasn't getting sufficient blood flow.  I expected to get a call between 11 and 11:30 but they called at 9:45 to say they were done, what a relief :)  We also learned that she has another unique part to her heart that doesn't cause any issues but does matter for her next surgery.  She has two superior vena cavas, it's really rare.

Adelina did not like coming out of the sedation.  We spent all day trying to make her comfortable.  Her cries were heart wrenching, she was running a fever and her pupils were dilated.  Finally, at four o'clock they gave her Adavan and she's been sleeping peacefully ever since.

6 weeks post op

Thank you fellow heart mom for reminding me about our exciting day.  Adelina is 6 weeks post Norwood.  We celebrated yesterday for about 2 seconds before she went in for her heart cath but will continue to celebrate.  Adelina can now be lifted under her arms and lay on her stomach for tummy time.  We can also now recline in a chair while holding her (this has been the toughest to avoid).  So excited that we are six weeks out!

Night so far...

Bath.  Clean Clothes.  Hold medicine.  Change feeds.  It seems pretty simple, and it is but it's 4:35 am and I have had only a few hours of sleep.  Around 8:30 we bathed Adelina, she hated it and screamed until she threw up, all over herself :(  We ended up just using a washcloth to clean her up.  I then washed her hair, she LOVED it.  At ten, I filled Adelina's feeding bag with her regular high calorie milk.  At midnight it had to be changed again to milk only without added formula.  At 2:30 it had to be changed again to pedialyte and seven minutes ago all feeds were stopped.  Every time a bag is changed I add an additional 12 ml to account for the tube but they never seem to run out when they should.  Last night I added more just so she wouldn't run out early but, she still ran out five minutes early with just plain milk and thirteen minutes early with the pedialyte.  Oh well, I did my best.

Tubes

My wonderful mother took Lily in to the specialist and sure enough she needs tubes.  One eardrum isn't vibrating due to fluid build up.  I had started to question whether she would need them since she really has a large vocabulary for such a little girl.  "Gethsemane" came out of her mouth the other day.  It's her favorite song by Claire Ryann :)  She's such a fun, spunky toddler and insists that Adelina's name be pronounced "Adelina" not "Addy."  She also insists that she belongs to her and keeps calling me by my first name instead of "mom."  We are so blessed to have her.

So sweet!

Our first outpatient Echo

I ignorantly thought nothing would be needed until we got closer to Addy's second surgery.  Imagine my surprise when we were told that early next week we will need to go to for her first heart catheter.  Near her aortic arch, that has been rebuilt, is a portion that is narrowing.  For a single ventricle baby that is bad news, her heart is already working too hard so they can't let it have any resistance.  A catheter will be fed into her heart and a balloon will be inflated to enlarge the opening.  I'm grateful that something can be done about this but sad that we will be back in the hospital after just three weeks.  It's a same day surgery but she will be kept over night in the Cardiac Intensive Care Unit just to be safe.

We also met with speech therapy to assess feeding.  Let's just say the feeding tube is going to be around for awhile, I don't know why I was so surprised.  I know that our little one is critically ill but for a short time I think I had convinced myself otherwise.  No worries, a little sleep and things will be back in perspective.

There were three of us having babies with HLHS at Primary Children's the same week.  Precious Hope returned to heaven on the 31st of October.  Cute little red headed Colten ended up having a different diagnosis but is returning to heaven tonight.  My heart is breaking for these amazing families.

She wore herself out trying to get her arms free.