News Worth Sharing

As most of you know, among the medical conditions that Jude faces due to his chromosome abnormality is a heart defect known as a hypertrophic cardiomyopathy, or thickness of the heart.  Well actually Jude suffers from an inoperable left ventricular obstructive hypertrophic cardiomyopathy which means that the wall of the lower left ventricle is very thick.  So thick that it obstructs blood flow through the heart.  Of all the medical obstacles that Jude faces, this has been the most critical and life threatening hurdle in his path. 


When Jude was only three months old, this heart defect caused him to suffer from congestive heart failure.  But, as mentioned earlier, the defect is INOPERABLE!  Jude was given days to live.. some of the darkest days of our lives.  


Well we are so blessed the our Father so graciously intervened with His own special plan for Jude's life and ours... 


It's a great memory and testimony, but that isn't exactly what this post is about.  It's about a celebration on just how far we've come.


When we left the NICU with our heartbreaking diagnosis, we basically lived moment to moment.  We had no idea what the next five minutes would bring- which is a reality few of us are willing to face in everyday life.  We also came home with a ton of new medical equipment and lots of meds, and Jude's room looked less like a sweet nursery and more like hospital room.


Jude was on oxygen 24/7.  We couldn't even go from the house to the car without him being on an oxygen tank.  He was fed by a feeding pump which he was also on 24/7.  This gradually fed him because his little heart couldn't handle the stress of getting a regular feed.  And finally we added a heart/apnea monitor to the gang- and if you have ever experienced a heart monitor alarming at 3am, you have a new understanding of what true terror is.  


All this equipment had to come everywhere with us.  And we had a lot of places to go: several specialists and pediatrician visits.  Most important of these appointments were the cardiologist visits- and there were a lot of those.  We started off seeing the cardiologist twice a week.  Gradually we moved to once a week, then to twice a month, to once a month, then to once every six weeks.  As this pattern continued, Jude was also required to use his medical equipment less and less.  Eventually we graduated to seeing the cardiologist once every six months and got to say farewell to the use of the heart monitor all together.


Well yesterday, just three days after the three year anniversary of Jude's devastating heart diagnosis, we saw Jude's cardiologist for his regular six month follow up... Well he had wonderful news for us.  The cardiologist feels like Jude looks so well that we don't have to see him for an entire year.  He also said that he has a plan in place to let Jude gradually grow out of his heart med dosage.  This is a low risk trial and we won't know for a year or two how this will go.  Regardless, this is very very good news.  


I am just elated with joy when I realize how far Jude has come and how far we have come as a family over the past three years.


Let me sing some praises for our cardiologist.


He has been a part of our family since Jude was born.  And naturally our situation has been a complex story of grief and total surrender; one situation that the cardiologist has even mentioned he feels a particular fondness of our family.  


Well yesterday, I nervously asked the doctor to confirm that he felt that Jude's heart problems were directly related to his chromosome abnormality or CMV diagnosis.  He agreed to this.  


Well I anxiously explained that we were expecting again and it was a concern of mine.  Anxious because I have had another specialist of Jude's react rather discouraging upon hearing the news that Jude was going to be a big brother.  I left that office full of unnecessary embarrassment and shame over my little miracle.  So you can imagine my reluctance to share our news with another doctor.  


On top of that experience, I would be lying if I didn't admit to the worry over the health of my little sweet pea.  I believe that the Lord's plan is perfect for my life, but I just don't think that any mom would not be somewhat worried and very prayerful for a healthy baby.


Well to my complete surprise, the cardiologist was extremely pleased with our pregnancy.  I told him I was surprised by his reaction.  He said he was very happy that we made this decision to add to our family.  I explained that God made the decision for us, but we were excited nonetheless.


Then the cardiologist said that he encourages families with genetic health risks to have more children all the time.  His exact words were, "You could be blessed with a normal baby.  And if you were to have another special needs baby, then what better parent to give it to."


He finished the conversation by saying this was great news and he thinks we should do this two or three more times!  WHOA!  Slow down, Dr. C!  


It was a great day.  With the news of Jude's progress and the encouragement from the doctor, I left the office on cloud 9.


On some super cute Jude news: we are increasing the amount of time Jude is in his gait trainer- the equipment that is teaching him how to walk.  I brought Jude in his gait trainer to his appointment yesterday and he was so cute in it.  When we were leaving, he held my hand and hopped to the the truck.  Everyone stopped to say how cute he was.  


We also brought Jude to church in his gait trainer for the first time.  In some weird way, I felt like I was bringing Jude to school for the first time.  I was so excited to bring him to his big boy class.  He was in a class with children his age for the first time in a couple years.  He played so well with the other children.  I was SO PROUD OF HIM!  Then we picked him up and he once again hopped all the way to the truck.


It was truly the best day of the year... and we are just getting started ;-)