Thursday, February 21, 2013

Getting closer

A couple days ago Lucy was weaned off from the morphine about the same time we started nursing. Instead of the morphine she could have Oxy or Tylenol for pain as she needed. I'm not sure if they were leaving it up to us to decide or not. I kind of thought, they would suggest or give it to her if they thought she needed. She would lie still and sleep in her bed or be content while nursing, but if you bugged her or on the transition between the two she was really agitated and unhappy. I feel guilty now not knowing it was because of pain...why wouldn't it be though, she had her chest cracked open 4 days earlier. 

The way things work where Lucy is at right now on this progressive/moderate care level, all decisions about her care are made by the nurse practitioner not a doctor. Last night, after Lucy had gone about 36 hours without pain meds, our nurse practitioner advised us that we should definitely be giving Lucy pain meds and that her dip in oxygen and her fussiness when she was touched were more likely a result of pain in her chest that abated when she was left alone.  He oxygen was low, because it hurt to take deep breaths. Why did they not tell us this down stairs?! Josh and I felt a lot of guilt that we failed to understand the pain that our daughter was experiencing and the simple measure to take away that pain...As soon as she was stabilized and alternating between pain meds, her oxygen was fine, and I even think the nursing became easier. The pendulum swings here because we know what it's like without taking the meds, but with them she is sleepier and rarely shows signs of hunger on her own. We need her to eat aggressively in order to gain weight and go home.

The roller coaster of emotions swung the other way this morning.  We anticipated another boring day of waiting to see about weight gain, but today was a day of great joy.  Lucy had her final echo and EKG.  Everything looks great. Even the size discrepancy between ventricles has evened out just since her first echo last wednesday. Praise God!  It seems like the only thing that we are waiting for at this point is the weight gain through breast feeding.  Lucy and I continue to work so hard at success and we are knocking on the door of discharge.  All of her umbilical lines and pace wires have been removed, and there is no IV in her arm...we have a virtually untethered baby. Lucy also had her first bath 
(other than just being wiped down) and we were able to scrub a lot of sticky residue off.  To top that all off, she is wearing one of our own onesies...starting to feel more and more like a normal baby.

Pacer wires and umbilical lines were pulled...everything is coming out.

Final echocardiogram before discharge.

Bath time.

Nice and clean mama time with a wire-free baby.

You would think she would be happier to be wearing clothes for the first time.

We were blessed to have some friends visit us tonight and bring us dinner.  Our support network continues to be a blessing from the Lord.





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