Friday, February 22, 2013

Caroline's Story...Part 2

We decided to quit posting too much information before we left our local hospital because it seemed that just as we were told one thing, the doctors came back with another.  Initially we were told her echocardidiogram was fine, then as we were leaving the hospital, the doctor told us that Caroline had 1 heart defect, a membranous VSD.  She said this could heal on it's own though so we weren't too worried.  Also we were given a good report on her brain MRI only to find out later that she had some orbital problems with her eyes and that they were not formed correctly.  Blood was drawn and sent off for genetic testing too but we were told it would take 4 weeks to come back.  After 12 hours of phototherapy for jaundice and a 1.5 hour carseat test, we were finally able to go home on January 1, 2013.  

We were told that we would need to follow up at Dell Children's Hospital over the next few months with pediatric cardiologists, ophthalmologists, geneticists, and ENTs.  We were also told that Caroline was going to have some battles and we didn't have any answers yet but that if we suspected any little thing to be wrong, we needed to get her to the ER quickly or get a hold of our doctor.  We went home so excited to bring our baby home to her brothers and sisters and looked forward to our life with her.

Over the next 24 hours, things started to go down hill. She very quickly decreased the amount she was eating by bottle and was very lethargic.  When I called the doctor to ask if I should be worried about how little she was eating, she said that we should bring her in the next morning to be weighed.  Thirty minutes later she called back.  She said she talked to two neonatologists and both agreed that something was wrong and she needed to get Dell Children's Hospital in Austin for further evaluation.  This way too all of her testing could be run at one time instead of the months of individual appointments we faced.  

Kenneth drove Caroline and I to Austin where we were initially admitted to Pediatric.  That night was hard.  After finally finding a big enough vein on her scalp, an IV was started.  Kenneth and I cared for her all night along with nurse checks every 3 hours but the room was very cold and so was she.  We swaddled her in four blankets to try to help her maintain her temperature.  She continued to eat poorly.  The next morning all agreed that pediatrics was not the right place for her and we were quickly moved up to the neonatal ICU (NICU).  They immediately got her in the warming bed and inserted a feeding tube.  After the first tube feeding, she finally started to perk up a bit.  

That day (Thursday) was filled with doctors and nurses constantly in and out of the room and lots of tests being run on our baby.  Another echo-cardiogram was done this time revealing not 1 but 4 heart defects-a membranous VSD, a large ASD, a PDA (an unclosed ductus), and one valve was not in the right place.  As each doctor came to evaluate our baby I grew more and more uneasy with them searching over every part of her body.  They kept saying things like, "we are concerned" with what they saw.  Finally when the geneticist also said she was concerned, we asked her just to tell us what she thought was wrong and we heard the words "trisomy" for the first time.  We immediately googled it and quickly realized that our precious new baby girl had almost every characteristic we read about.  We were devastated.  But the worst was yet to come.  The neonatologist came back  to talk to us later but Kenneth had stepped out for a minute.  I asked him what the life span was with trisomy and he said, "She may live a few days, weeks or months, but rarely do they live over one year." be continued.
Our precious new baby Caroline is currently at Dell Childrens Hospital. Without going into details, sweet Caroline has some hills to climb. She has many issues including several heart defects that are all associated with a possible genetic defect. Our hope is to get her feeding problems under control so we can take her home and just love on our sweet baby. We know this is all in the Lords hands! — at Dell Children's Medical Center of Central Texas.

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