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

Pediatrician to Geneticist and every thing in between.....Part 3

We left off with Ava having her 3rd HIDA Scan Friday morning on December 15.  That afternoon we had an appointment with Dr. Johnson to hear the results.  He had anticipated the first scan to give us the answer of whether or not Ava had Biliary Atresia .

We were so nervous to hear her results.  We were standing in his waiting room with our newborn for about an hour and a half.  Lucky for us, Ava is the sweetest and most patient baby.  We get into the room with Dr. Johnson and his nurse practitioner and we already notice the tension between them.  He doesn't let her finish asking questions or fill her in on why we were there.  It was like watching mom and dad fight passive aggressively.

First night in NICU

Anyway, Dr. Johnson informs everyone in the room he has the results for us and it doesn't look good.  He explains that what ever goes into Ava's liver isn't coming out.  This is why she is jaundice.  He then explains that it is 90% Biliary Atresia and we should go to Miami because they are amazing for liver transplants.  My flippin heart hit the floor.  I think my ears shut off and I almost passed out.  Our newborn little girl was getting a liver transplant??? Jimmy proceeds to ask questions but I can't even hear anything.   It is explained that Ava will need a Kasai Procedure .  There are different ways of having the Kasai Procedure done and the only way to verify Biliary Atresia and which type of Kasai to do is surgery.  He also explains we should do some research and find a good surgeon out in Miami since they are so well known at the for liver transplants.  We leave with some new formula, because we are still battling Ava's weight issues, that is supposed to help Ava not throw up as much and start getting her weight moving in the right direction.

We get home and Jimmy had to go to work.  He's so amazing because I cannot hide my emotions.  I would've been crying all over our studio.  Plus add in postpartum hormones and it was a sh%tstorm.

That evening we get a call from our pediatrician.  This amazing woman throughout this whole process has been finding our specialist's phone numbers and contacting them.  She then calls us with layman's terms on what they are saying.  We explained to her how Dr. Johnson has told us to head to Miami.  Jimmy thought it was a pretty aggressive suggestion.  I can't even think straight without crying.  The pediatrician agrees with Jimmy and suggests we stay in Tampa and contact a surgeon she had just networked with at USF and works at Tampa General Hospital.

This beautiful lady contacted us at 8 pm on a Friday night, called this surgeon about 8:30 pm on a Friday night and we were advised to call his office Monday morning to get in that afternoon. Our pediatrician explains that time is crazy important for Ava.  The success rate for the Kasai Procedure is all in the age of the patients.  If she gets it done after 3 months of age chances are it won't take and then a liver transplant is need.  She also explains even if it does take someday Ava will eventually need a liver transplant. 

She informs us that Dr. Padias will most likely want to admit us to the hospital to run tests and watch Ava's weight.  Surgery cannot be performed if she is underweight because they are too nervous about how she will recover.  We hang up the phone to have a whole weekend of anxiety and denial.

How could this happen?  This can't be right?  She hasn't even had a chance yet.  These are the sentences repeated throughout the weekend.  Trying to explain everything to our families is just a replay of all our unanswered questions.

Monday finally comes and we meet with Dr. Padias the surgeon at Tampa General Hospital with our packed bags in the car.  He is amazing and wonderful!  He looks at Ava and is so calm when speaking to us.  He explains he wants to have Ava admitted because he wants to run more tests to make absolutely sure it could be Biliary Atresia before opening her up.  He tells us, in his opinion, that it does not sound like Biliary Atresia. Since Ava was still under 3 months he was able to get us a room in the NICU.  That was the night of December 17th.  Now this is where all the fun happens...... (again I have linked the fun medical vocab words if interested)

Pediatrician to Geneticist and every thing in between.. Part 2

I realized in my last post I didn't give an accurate time line of all these doctor appointments and running around we were doing.  Ava was born on November 20th.  All these appointments and runs to the hospital for testing all took place from that day until the first week of December.  Basically, Ava was 3 weeks old.

Also, not mentioned was the craziness happening with breastfeeding.  In between all the doctor appointments I was trying to get myself into the free lactation clinic held at the hospital we delivered at.  I remember specifically one day Jimmy and I were there asking questions and telling the lactation specialist some of the problems we were having and about Ava's jaundice.  She said 2 things that legitimately hit my soul and changed my mothering from that day forward. First, she explained to us that Ava was only going to be this age once and no matter what difficulties we were dealing with, find the happiness and love in being with her.  Second, I had told her the story of how painful it was for me to watch Ava's blood be taken and I had to leave the room.  She looked right at me and said, "You are her comfort.  You are all she knows.  It might be hard but she needs to smell you and feel you to know it's ok.  You can cry and be upset but be there."  I never left Ava's side again after that unless advised by the doctors.  I am forever grateful for that one day at the lactation clinic.

Lastly, Ava is also having weigh-ins every 2-3 days to see if her weight is changing.  This is along with every single weigh-in at every single doctor's office we go to.  

Ok, back to Ava's crazy doctor schedule.  After seeing the doctor that didn't take our insurance we were referred out to another Gastroenterologist.  This gentleman was smart but REALLY aggressive with is medical practice.  At our first appointment we went over issues we were having with weight, jaundice and supplementation.  We also went over her test results.  This is were everything starts to get pretty scary.

Dr. Johnson, we will call him, told us Ava's test results seem to be pointing to Biliary Atresia .  He explained that the when this happens Ava's liver can't get rid of anything.  It just stores up the junk (technical term) and will eventually lead to liver failure.  Our hearts literally dropped.  He was kind enough though to say this all with a smile on his face which made Jimmy want to Hulk Smash him.
He continued to explain it could be several other factor such as hereditary diseases but mostly focused on the Biliary Atresia.   He wanted to get more tests done.  This meant more blood tests and something called a HIDA scan .  He explained that the best way to know if it was in fact Biliary Atresia this scan would be the all knowing. With that, we scheduled appointments and I cried my eyes out in the car on the way home.

On December 13 we took Ava in for blood work at the lab.  I won't use the actually name of the facility but for this we will call it The Land of Unknowing. 

Ava was called in, I had my tissues and the Unknowing Nurse pricked our babies feet 3 separate times and did not successfully get any blood worth using.  I was crying my eyes out, she was crying her eyes out and Jimmy was trying to calm us both down. Finally another nurse came on duty and Ava was saved.  It took her 15 minutes and we were out of there.  By the time we got home Ava girl was all smiles and ready for her nap lol.  I on the hand was trying to make a voodoo doll of the first nurse to prick her heel 87 times.

On December 14 we had the HIDA scan.  Now, this was pretty intense as you can see from the photo.  Have you ever had to fast an infant?  It was AWFUL!  We were already having trouble with Ava's weight.  Now we were fasting her for 4 hours.  In infant world that's like a whole day.

We were in the room and an amazing nurse came in to give Ava an injection of dye that would travel through Ava's body.  This would let us know how the uptake and output of Ava's liver and gallbladder was.  We were introduced to this magical liquid called Sweetums.  This stuff works like morphine for the babes but it's just sugar water.  Ava didn't even realize she was getting an injection.  It filled my heart with so much happiness!  She was basically in a sugar coma while the test was going on.

Finally, the test finishes and we are excited to be done and go home.  The tech calls the office of the all might test readers, the Wizard of Oz if you will, and we are told they can't read the test properly and will need to try again.  WHAT! Our little lady has already fasted for 4 hours.  Now we needed to wait another 2 hours.  We had to let our baby not eat for 6 hours!  That's like a flippin week for her!

So we wait and I'm pacing and Jimmy again is our strength and talks me down.  We get called back in again.  No injection needed.  We go through the test which takes about 30 mins.  Wait for the tech to call the Wiz and we find out again they can't read it.  The tech was an angel and refused to keep fasting Ava.  She suggested that we go home and come back in the morning to run the same test again.  I wanted to hug her!

We got to feed Ava and we headed out for the night.  The rest of day we played catch up with Ava's feeding because of course, we had another weigh in for her in 2 days.

The next morning Ava and I show up, Jimmy had to work and thank goodness throughout all of this he is able to balance Daddy duty and Boss duty. 

We have the test run again.  The tech never says anything to me about whether the test was good or bad and just hands me the CD with the results.  I had an awful feeling it wasn't going to go well when we went to Dr. Johnson's office again.

To be continued.......  (I did add links on Biliary Aterisa and HIDA Scan for definition if you are interested)

 

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........