More Confusing than Amusing

My baby girl!  She got eye drops put in, so her eyes look a little red!  However, she looks a little "plumper" today!

Frustration can come in many forms.  Today it came in  many  forms, the first being stopping feeds again.  I guess, at times I wonder why they make the decisions they make for Emma.  It is hard for me to see her getting so skinny and yet they stop feeding her.  Apparently, her tube that was supposed to be ND (in the duodenum) was NG (in the stomach).  They think this is why she is throwing up.  It also has to do with the fact that Emma can still be irritated.  When this happens she gets mad, gags, and throws up.  She never threw up her feeds unless she was being messed with and got upset.  They are hoping to redo the feeding tube today and make it ND and start feeds again.

The doctors are trying to understand why Emma is still putting out so much drainage from her chest tube.  They are taking measures to try to figure this out.

Emma getting her heart echo!

They did a heart echo on Emma today to check for cardiac line function.  I got to see Emma’s heart functioning in its new form.  This was really neat to see.  You could clearly see the new construction.  It was truly amazing to see my little girl’s heart working so well.  Emma cooperated so well during her echo.  We were very proud.

They also put in a foot PIV.  Another step being made today(hopefully) is putting in a PICC line.  This is a positive step because it puts us closer to having  the intercardiac lines out which means I could hold my baby girl.  However, this is where frustration number 2 happens.  The PICC line team calls and says they can put in Emma’s line in 15 mins.  The CICU team works hard getting Emma ready to go.  Emma is not happy about everything that is happening and all of the movement they are doing, so she gets upset and throws up a lot.  My poor baby girl.  They had to put a line into her stomach to get the air out and the rest of the bile.  Well, they finally get everything ready (which is a huge effort since they have to move all of her meds, monitors, oxygen, etc.), we get moved a few feet out of the door and the PICC team calls and says we were too late and have been cancelled.  The doctor was MAD and I was even more MAD.  You get my baby girl all upset and uncomfortable and then you cancel her spot because we could not unhook her 400 machines fast enough.  We are scheduled to try again 3:00pm.  Hopefully this will work so we can get that PICC line in.    

 So, we have had a lot go on today and Emma has not got to rest much at all.  I know that there must be a method to their madness, but that doesn’t mean I don’t question their methods from time to time.   Let me clarify,  we are so very appreciative of all of Emma’s doctors, nurses, and therapists.  They are working hard to get her better. 

Keep praying!  While things may seem to be moving slow at times, we have been told that all of this is “normal.”  Emma is not any other heart baby and will do things in her own time.  Pray that Scott and I will have the endurance and patience to deal with the day to day, and to take this journey a day at a time. 

Specific Prayer Requests:

1) Pray that they can get the feeding tube in the right place and that she tolerates the milk, so she can start to gain weight.

2)  Pray for her heart, that it continues to be arrhythmia free and functions well.

3)  Pray that her chest tube quits draining so much and that it can come out soon.

4)  Pray for her right lung, that it continues to remain inflated and that both of her lungs remain open, clear, and function properly.

5)  Pray for the doctors, nurses, respiratory therapists, nurse practitioners, fellows, etc.  that all do amazing things for Emma.

6)  Please continue to pray that all of her numbers continue to look great!  That includes saturations, labs, weight, growth, heart rate, blood pressure, LAP, temperature, etc.

Mommy (Sarah)