Those doctors!

We were only in the NICU for about three weeks.  It felt like forever, as we had to stay overnight because it was an hour's drive to the hospital.  We got to where we were feeding her every 3 hours (the doctors were so hesitant in upping her feeding, although she did really well)  And although she still had the NG tube, we were going to go home very soon.  We took the CPR class, the discharge class (which was like taking a temp and bathing your baby....come on, really?)  and we bought the car seat and were ready to go.  We were all packed up and the nurse came in to give me all of my left over breast milk. 

But then, as we were celebrating how lucky we were that she was eating and going home healthy with no scares, the doctor came in and said that we couldn't go home because she needed more tests.  She had some high numbers come back from some blood work and the kidney specialist wanted to check her out some more.  So we thought, ok a few extra hours and then we can go home.  However, this was not the case. 

The doctor came in and told us that her numbers were reading high levels of potassium and calcium.  So they did a test to see if she had reflux in her kidneys, which she did.  The doctor said that her kidneys were failing and the we had to think about maybe dialysis or a kidney transplant.  This was a huge shock to us.  We went from being happy to go home to our daughter is dying.  We could no longer give her my breast milk, but a special, very expensive formula for babies with kidney failure.  It was an awful day for me.  I felt like the one thing I could do, give her breastmilk, was killing her.  I couldn't even breastfeed to comfort her or walk around and hold her.  We had to sleep another night in the rooms that they had given us.  The nurse that night was pretty mad because they waiting until we were about to be discharged to do anything about the numbers that were sitting there for a week.  What a way to take a great day and smash it all to pieces!

We went home the next day, but we were feeling pretty low.  The good news was that we got to meet our pediatrician that day.  He was pretty awesome.  When he looked at the numbers, he was almost sure that her numbers were high because of the additive they were adding into the milk in the hospital.  He put her back on breast milk, much to my liking and ordered tests.  The next few weeks we had test that came back more and more regular.  However when we went to the kidney doctor again she freaked out on us.  It wasnt until she saw the tests herself that she agreed to keep her on the breastmilk, as if she was the final choice on that!

Another of the things we were shocked in a bad way about was her heart.  She was born with the bypass coming out of her heart in the wrong place.  The fetal echocardiogram saw this, along with leaky valves and the usual openings in her heart.   The doctors, both the cardiologist and the paranatal doctors said this was totally ok and did not mess with the function of her heart.  When we saw the cardiologist, she said she wasnt worried about the valves or the openings, these would resolve for themselves, but the bypass came out of her left cusp instead of the right and was in the heart muscle and between the valves.  So in the event of very elevated prolonged heart rate, the valves would be open and essentially cut off supply from the bypass and cause an infarction. 

Or in other words, a heart attack.  In a normal baby this would be silly to even think about because the most they do is be pissed off because they are hungry.  However with this syndrome, seizures are a big possibility and that would do enough to give my little baby a heart attack.  This was also something that felt like a sucker punch.  We cannot do further testing because of her small, low functioning kidneys.  The doc said this problem is 50/50 among doctors at doing a surgery because of the dangers of going into the heart, they don't necessarily outweigh the threat of a heart attack.  So we wait for something to develop in that area.  Obviously the bypass is not "ok" and we have to worry about that.  Whenever we take her to the hospital for something big, we will have to have them test for a heart attack.  It just doesnt seem fair!

I am sure this is just the beginning of my woe's with doctors and getting it wrong.  We are trying to keep in mind all of the great things that she can do.  She can eat all on her own, no tube.  She can pick up her little head to look around.  She can hear really loud noises, but we are not really sure how good she hears.  She thinks it is funny to look at the fan.  She is almost closing her eye all the way now!  And she is still here giving us a blessed life.  It just would be more convenient if we knew everything right now and there were not any more surprises.  I used to love them, but now, not so much!