Wednesday, July 15, 2015

A Crazy Month

I hate going this long between updates!  It has been a month since I've documented Austin's life here at home and a lot has been going on.  Unfortunately the entire past month hasn't been spent at home.  We were so sad to be back in the hospital but thankfully his stay wasn't too long this time around!

Austin was re-admitted to PCH on Wednesday, July 1st for a variety of reasons.  He had a well check with his pediatrician that afternoon and we all agreed that he looked a bit yellower than he had previously.  Our pediatrician suggested we check his liver function just to be safe and we asked him to check his hematocrit at the same time.  Logan and I took Austin up to PCH to have the labs drawn and our doctor's office said they would call us in the morning with the results.  Shortly after we got home from the hospital, our phone rang and I knew it was going to be bad news regarding his labs.  

Sure enough, our pediatrician told us in a nutshell that his labs were critical so we needed to take him to the hospital to be admitted.  Not only were Logan and I discouraged to be heading back to the hospital, but just that morning at our pediatrician's office, Austin had received orders to d/c his oxygen and monitor so we were going to have a tube/cord free baby for the first time.  That seems so unimportant in the grand scheme of things but it definitely bummed us out at the time.

We got up to the ED around 7:00pm and didn't make it to our room until after 11:30pm.  Talk about an exhausting evening!  One reason it took so long was because they were debating between sending Austin to the PICU or Infant Unit.  We couldn't believe they were considering the PICU when he seemed so healthy despite his color being off.  Apparently on paper Austin's labs were very critical and they weren't sure the floor could handle him.  We assured them they could!

Austin's hematocrit was 16 so the first item of business was a blood transfusion.  We couldn't believe he had gotten so low again!  He wasn't symptomatic for being anemic at all so in a way his jaundice was a huge blessing otherwise we may not have discovered it for quite awhile.  Aside from such a low blood level, his liver enzymes and bilirubin were all quite elevated.  The team started throwing diagnoses like "Biliary Atrasia" around and we were pretty scared for awhile.  After running multiple tests and doing an ultrasound of his liver, it was determined that he probably doesn't have a liver disease because everything came back negative but his liver did look a bit inflamed.

Aside from a liver disease, they also mentioned that Austin might be septic with something like congenital CMV or another infection.  Naturally, cultures were taken and more labs were drawn but everything continued to come back negative.  We were so happy all of his tests looked normal but everyone was stumped as to what might be wrong with his liver.  Logan and I have been blessed with an amazing pediatrician and he actually presented a theory to everyone that now seems to be correct.  He believes that Austin's liver issues are all related to his Rh disease.  He thinks that Austin's bone marrow finally woke up and began spitting out a ton of red blood cells but there was still Anti D left in his body that I transferred to him during pregnancy so the Anti D attacked the new, positive cells and caused everything to hemolyze and sludge up his liver.  The specialists weren't entirely convinced of this theory and wanted to do a liver biopsy to further investigate but Logan and I didn't want to do such an invasive procedure so fast.  They agreed to test Austin's levels one more time on Monday the 6th and if his levels were up, we would do the biopsy but if they were down, we could go home and monitor his labs as an outpatient.

The labs on that Monday showed quite a bit of improvement so we packed up and headed home!  Unfortunately Austin's color is still pretty yellow/tan  and when we checked his labs a few days later there was no more improvement so we expected them to suggest the biopsy again.  Fortunately they didn't go that route and instead said that they do believe our pediatrician's theory is correct and want to give his liver more time before jumping to any conclusions.  Hallelujah!  We asked the liver specialists if Rh disease is typically this difficult to treat because Logan and I were under the impression that it would not be this hard and he said: "No, it's not usually this nasty.  This is definitely the most severe form of Rh disease I have ever seen."  Of course.  Just our luck!

The liver team has now passed Austin off to the hematology folk so we will meet with them next week and should have more info at that time.  There are a couple treatments sometimes used to treat Rh disease that we will hopefully discuss trying if Austin doesn't improve on his own.  In the meantime, we are thrilled to be home!

Aside from Austin's liver issues, he is now two months old and thriving!  If his skin wasn't a bit yellow, you would never know anything is wrong.  He eats really well, weighs about 7 pounds, and is smiling more and more!  We took him to get his newborn pictures taken finally and they couldn't have gone better!  We have only seen one but I know the rest will be just as darling!  Here's a sneak peak of our little love bug :)