Friday, July 6, 2018

Pediatrician to Geneticist and every thing in between...



I've wanted to post our journey with Ava for a while now but it still gives me anxiety thinking about it all.  As I'm writing I'm sitting on the floor next to this super healthy, happy and chunky little girl and I figured this is probably the best time.  I have a great reminder that we made it!

So, let's start at the beginning.  Can you believe after you delivery your baby, the hospital hands you this little person and just sends you home?  Like here, you are now in charge of a whole new life.  Good luck!   It's kind of scary right?  Even if you have the healthiest baby you are still winging it with the first kid.  With that being said, we take home our beautiful new human after all her tests check out.  She is given an A+ in health.  It's the day before Thanksgiving and family is here in Tampa to meet baby girl.  The entire day the poor girl is crying her eyes out.  We still were working on the whole breastfeeding thing.  I'm full of hormones and crying.  My friend comes over to help me out.  We get a little headway which is great but I've been up most nights every 30 mins.  It was rough.

The next morning we head to our pediatrician for Ava's first doctors appointment and she has lost weight.  Most babies lose weight when they get home but this was more than the norm.  The pediatrician suggests supplementing formula to help get her weight back up.  (you can read about this in my previous blog). We head home with an appointment to go back to the peds office in 2 days.  The supplementations starts right at the next feeding and we're off! We head back into the office and Ava but on some great weight.  Head home again with another appointment in a couple days for another weigh in.  This weigh in didn't go so well.

While the weigh in didn't go well and we're having to wake a sleeping newborn every 2 hours, our pediatrician and Jimmy (Ava's handsome daddy) realized that Ava looks a little yellow and her eyes have a yellow tint to them.  The pediatrician decides we need to test Ava's bilirubin levels. We have such a great pediatrician's office that we get a call in the same day with results.  Ava's indirect bilirubin levels were high.  Apparently, the indirect level should be zero.  Ava's was 4.6.  This means something in her digestive track isn't right.  It could be a disorder or it could be liver disease.  The awful possibilities are endless.

Our pediatrician sends us to a pediatric gastroenterologist.  We show up and have no idea what to expect.  Questions like, is Ava's poo cream colored? Do you have a dirty diaper with you? are asked.  We tell them no and no.  We tell them how Ava isn't doing great with the formula and barfing A LOT.  Not like spit up but projectile.  They give us a new formula with a referral for some tests to be done. Head home and stress about what the outcome could possibly be.


The next day we head back to the hospital where the G.I. doctor was located to get testing done.  They are looking for an ultrasound on Ava's liver and gallbladder and a slue of different blood work.  We had called and asked if our little girl had to fast for any of the tests.  They told us no.  Get in with the ultrasound tech (who was late) and she freaks out because Ava had eaten before the test and no one would have ever told us that she could eat.  Pretty sure this poor lady was having a bad day.  We offer to go upstairs for Ava's bloodwork while she "fasts" for her ultrasound.

We get upstairs, giving our insurance information to the young lady before our blood tests and she informs us that the hospital does not accept our insurance.  Also meaning, our G.I. doctor also will not accept our insurance.  Flippin CRAZY!  They suggest we head to a local lab that does accept our insurance which was down the road and off we went.

This lab office was very sweet and it was the first time Ava was having blood drawn.  I was a mess.  I didn't want to be in the room but couldn't stay away.  Jimmy was helping hold Ava in place and I was crying my eyes out.  For real.  Just couldn't stop it. It literally felt like someone was crushing my heart.  Little did I know this was just the tip of the iceberg when it came to this feeling.  We finally leave and I'm trying to control myself before we head back to the cranky ultrasound tech.

We are at about 4 hours of running around with a newborn now and stuck in the waiting room for the ultrasound.  Ava is hangry to say the least and we really can't do anything.  Finally at about hour 5 we are called in.  They do the ultrasound and baby girl can eat.  Now, we have to wait for results.  We also have to call our pediatrician for another referral to a doctor who will accept our insurance.  We get the number set up the appointment and wait for results.

TO BE CONTINUED........

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