Pediatrician to Geneticist and every thing in between.....Part 4

On to the fun.......

Our first Family Christmas

We were admitted into the NICU at Tampa General Hospital on December 18, 2017.  That night we got a room and basically moved in.  There was no way we were leaving our little girl.  Pretty sure we got to cool nicknames of "Helicopter Parents" by the nurses.

 That night they got Ava all hooked up to her monitors, got an extra recliner for us since there is usually just one in the room and started all the questions to get us started for the next morning which would be full of tests.  During the questions breastfeeding had come up and I expressed my struggles and how we were doing the best we could.  The NICU doctor suggested a lactation specialist come in to help out and I 10000% agreed.

The next morning started early.  We had the NICU staff rounding at about 530 am.  We were to wake Ava every 2 hours in order to feed her so she could put weight on.  Once in the NICU she was waking pretty much every hour.  We were totally Team No Sleep.  We were introduced to so many doctors, nurse practitioners and specialist in our first day it's hard to even remember who was there.

We were introduced to our nurse who was with us for the first 3 days named Rick.  He was amazing!  He knew Jimmy and I were new parents and taught us so much.  He was patient with us and explained everything that was going on.  He also encouraged us to stay strong and complimented us when we were lost.  The best part was he was with Ava during every test while she was under his care.

Christmas Eve 2017

Just in the first 2 days Ava had blood tests, a catheter and a liver biopsy.  It was awful and terrifying.  We were there during every blood test but were not allowed in the room for the catheter or biopsy.  Ava was amazingly strong and impressed all the nurses and doctors. Everything after the first 2 days was just a waiting game to see if we could get her bilirubin down and her weight up.

Also on that first day the lactation specialist came in and changed our lives for the better.  First we worked on getting Ava to latch better and Ava was a champ.  Next was how much was Ava taking in.  For this a scale was brought in and we weighed her before she nursed and again after.  The most devastating news ever was Ava was barely getting anything from me.  She would knock out in the middle of nursing and I would do everything possible to keep her awake but it was because my supply was so low.  The lactation specialist gave us a game plan that literally doubled my supply within 3 days.  The plan was....

-nurse Ava every 2 hours
-pump for 15 mins after every nursing
-supplement with donor milk until supply increased

I was literally nursing, pumping and bottle feeding around the clock.  When Jimmy wasn't at Superheroes by Design, LLC training our clients he was helping me with Ava or taking care of our fur babies.  We became this amazing parenting team.  It was exactly what all the books and classes had told us about becoming a team.  We were there for each other through it all.  Did we fight? Of course!  With no sleep, impending doom for our baby over our heads and the pressure of new parenting things could get heated quickly but they also cooled down just as quickly.

Back to the NICU.  After those 2 days of tests and the assistance of the lactation specialist we were starting to get Ava's weight up and results were coming in.  Everything was coming back negative meaning things were leaning towards biliary atresia and exploratory surgery.  One of the tests however, the liver biopsy, didn't come through for us.  The tiny piece of her liver they collected dried up before they could get a good test out of it.  This was pretty tragic to hear.  It meant they would have to biopsy her liver again.

Christmas 2017

We waking up every 2 hours, once we were actually all asleep a nurse or doctor would need to come in and weigh or check Ava's vitals.  This went on for 10 days.  We celebrated our first Christmas as a family in the NICU and were so grateful for Ava's uncles Jimmy's brother and partner to come and bring us a full Christmas dinner.  It was the sweetest thing and I will never forget it.

Finally by the end of our first week there we got word that we were moving forward with surgery for Ava.  I, of course, cried my eyes out.  I also explained that I was nursing, pumping and bottle feeding round the clock so whenever we were getting news or doctors were rounding chances were my boobs were out.  I actually learned how to have a serious conversation regarding our daughter's well-being while being milked in some form.  Anyways, the date was set for January 2, 2018.  Now we just had to make sure Ava's weight was increasing and she was having good results for her medication (Actigal-to help reduce her bilirubin).

We were finally sent home December 27, 2018.  We were so blessed to have such an amazing group of friends that totally jumped in and helped out with our animals.  They also helped keep us sane by checking on us regularly.  We are so grateful for you all!

Now it was time to enjoy what time we had at home with our little one until surgery.  This is when we prayed.  We prayed there was no biliary atresia.  We prayed our baby girl would not need a transplant.  We prayed for normal new parent anxiety.  But through it all Ava girl had her smiles and laughs for us.  She was developing the way she should except the whole weight business.  We kept up our game plan of nursing and pumping but of course could not afford the donor milk at home so we started using formula referred to us by the lactation specialist.  Ava has been using Earth's Best since then.

So happy to be home