Two Steps Forward, One Step Back

What all the other heart moms have told me is true, expect to take two steps forward and one step back when you have a heart baby.  This morning around 8am I received a phone call from Sloan's nurse.  She told me that during the night Sloan had three bloody stools and that they stopped her feedings, her last was at 3am, and they were taking her down for an x-ray to see if anything showed in her bowels.  They were unsure if Sloan's feeding tube was irritating her as it was a bit too low (was going into her intestines) or if she potentially has something called NEC (necrotizing enterocolitis).  NEC is condition that typically occurs in preemie babies but can also occur in heart babies as well.  It basically is when part of the intestine dies due to it being underdeveloped or getting a lack of oxygen or blood flow.  There are a few symptoms that occur when there is neck, Sloan only has one of them - the bloody stool.

Kyle and I quickly finished getting ready and headed to the hospital. While there Sloan ended up having one more bloody stool.  The doctors decided that they were going to treat her for NEC even though they are unsure if this is what is going on.  They rather play things on the safe side as when NEC is untreated it can be very severe.  The pediatric surgeons also stopped by and they agree that treating her for NEC is the safest route to go.  They said that they usually do not see NEC in heart babies and that many times bloody stool just happens in heart babies.  It is unknown why - sometimes this goes away for heart babies and other times it can come back again and again.  So the plan for Sloan is to be treated with antibiotics for 3 days.  They will closely monitor her during this time to see if she continues to have bloody stools.  If she does not, they will begin to slowly feed her again after the 3 days.  If she does, she will continue antibiotics for at least 5 days and then slowly begin feedings.  So we have been told to expect a 1 - 2 week delay in discharge.  

It was quite devastating to get this news today -we were all packed and ready to go.  It also was heart breaking to see Sloan.  She was starving and so upset.  They took her off all of her oral meds and what she has gotten used to and hooked her back up to four pumps which contain the antibiotics, her nutrition (TPN and lipids), lasix and a med to replace the captopril.  She also is getting morphine as needed to help with discomfort.  She was worked up all day, puking up bile and mucus, at times inconsolable due to discomfort.  They pretty much turned things upside down on her and she was not happy.  

So now we wait.  I am hoping that this is not NEC and that it is something else.  My gut is telling me it's not since she has been doing so well up to this point and wasn't showing any of the other symptoms.  But I guess there is a possibility that it could be.  I have a few theories of what may be going on with her that I told the doctor I'd like to investigate after we see how she does over these next three days.  

Say a little prayer for our baby girl.  Seems very unfair that she's been dealt a hard hand but she's been more than amazing during these 4 weeks of life.  I just hope that she can catch a break here soon - she deserves it!