Just a couple of tweeks

On Sunday I got back to the hospital to find the team had changed Lucy from bolus feeds (48 ML every three hours) to continuous feeds (16 ML per hour).  What a difference the change in feeding routine made.  Lucy went from what we thought was a colic baby to a happy smiling baby.  We are learning so much in the process.  Due to her heart condition her oxygen rich blood is only saturated at 75 to 85 percent (normal heart has 100 percent saturation).  When this blood is pushed to the body, it's smart enough to know that the blood needs to go to the vital organs first....brain, liver, kidneys.  Stomach is the bottom of the barrel.  For Lucy, this did not allow her to process the formula all at one time which gave her so much discomfort that she was crying all the time.  As she gets stronger this should change and she will be able to handle feedings, then eventually take a bottle.  This smiling little face makes days spent in the hospital worth it!

Next the team started to ween all medications that are not needed for when she is at home.  As the team made changes Mike and I started studying all the things we will need to know for her care.  I have to say it is overwhelming, but Mike just seems to make it all okay.  He tells me that it will be overwhelming until we do it and then it will just seem like nothing.  We have been watching and learning all along.  Just to get a glimpse into her care, here are the things we have to know:

 - use a feeding pump

 - put in an NG tube and check for placement (this is how she gets food).

 - use an oxygen pump (Lucy will come home on oxygen to keep her saturation over 75%)

 - draw and administer medicine

 - speech therapist (teaching her how to take a bottle, her suck/swallow reflex has to be taught since     she was intubated after birth)

 - physical therapist (teaching her how to move and that all movement doesn't hurt)

 - occupational therapist (most of her experiences have been negative and we have to teach her that     she can be safe outside of a swaddle)

 - know any signs of distress while teaching (when she is overloaded with stimulus she feels out of       control and we have to stop so that learning doesn't become a negative experience)

 - know her red flags 

Last but certainly not least we still have to be her parents.  Sometime it escapes me that on top of all the stuff we need to teach her (that most babies develop automatically) we still just need to be her mom and dad.  We hope that when we come home and transition to life outside the hospital this will be easy and all the things listed above just become  routine.

She has come so far...she finally found her hands and was able to do tummy time without getting upset.

As we move closer to going home we ask that you pray for Lucy's continued progress and for a easy transition to home living.  And maybe some added strength for Mike and I as we become her full time care givers.