Austin's Journey

Those of you that are familiar with Eli's story know that he had a rough go for most of his short life.  Austin, however, had a rough road beginning from the time he was inside my tummy.  After learning that we are carriers of SCID and have a 25% chance of passing it on to subsequent children, Logan and I decided to expand our family through IVF so we could perform genetic testing on the embryos and ensure a SCID free embryo was transferred.  We were very blessed when our first single embryo transfer was successful!  Assuming we were past the difficult part of the pregnancy, we went to my first OB appointment with great anticipation.  However, we were shocked and worried to learn at that appointment that I had become Rh sensitized and would need to be followed by high-risk specialists for the duration of my pregnancy.  Our little Austin received two in-utero blood transfusions due to severe anemia and was born six weeks early on May 9, 2015.  I was induced for low amniotic fluid levels and because Austin was IUGR (intrauterine growth restriction).  Our tiny bean entered this world at only 3lb 8oz and 17 inches long but he was perfect in every other way!

After spending one week in the IMC NICU, Austin was diagnosed with neonatal diabetes and transferred to Primary Children's Hospital for more specialized care.  We were so sad to see Austin receiving countless needle sticks a day but we knew that things could always be much worse than diabetes so we were grateful it was just that.  Logan and I were surprised to learn that Austin failed to thrive in utero because of his diabetes and his body's lack of ability to access his sugar.  We were grateful to have an answer for that!  As Logan and I began our diabetic training and learned what it would take to test Austin's glucose level and administer insulin at home, we received our miracle.

Our family joined together on Saturday, June 6th for a fast on Austin's behalf that his little pancreas would wake up and begin to function normally.  Much to the doctor's surprise, June 6th at 6:30pm is the last dose of insulin Austin ever received.  We were in awe but so grateful for this miracle!  One week later and after spending his first five weeks of life in the hospital, Austin came home on just a tiny bit of oxygen but otherwise perfectly healthy!

We were home for a blissful three weeks before Austin became very yellow and our pediatrician was concerned about his liver function so he ordered some labs to make sure everything was okay. After having the labs drawn, our pediatrician called and said we needed to take Austin up to the hospital to be admitted because his liver was very sick. We were immediately taken back to our experience with Eli.  It happened just like this.

The doctors were initially worried that Austin had a scary liver disease but it was quickly confirmed that he had the most severe form of Rh Disease they had ever seen.  We were relieved to hear it wasn't something worse and grateful when they sent us home a few days later and said everything would get better with time.

We finally thought we were home for good until six weeks later happened.  Austin had gone up for a routine blood draw but by the time we got home he still hadn't stopped bleeding.  We called our pediatrician and he told us to go straight to the ED.  After more labs were drawn, we learned that Austin's liver was very sick again and, as a result, his blood wasn't clotting.  He was at a very high risk for having a stroke or seizure or bleeding on the brain.  The doctors once again confirmed that this was his Rh Disease causing problems and he still just needed time.  He was given some Vitamin K to help clot his blood and we were then sent home a few days later to wait it out once again.

That was finally our last hospital admission!  At the end of September 2015 Austin was officially discharged from Hematology services and in February 2016 he was released from the care of his liver doctor!  He is now living a perfectly healthy life at home with mom and dad :)
Less than one day old and SO tiny!
Two months old and so yellow and sick!
A happy and HEALTHY one year old!

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