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May 05-11

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Nash was discharged from the Pediatric Intensive Care Unit today and we're so happy to be home with him!  The nurses removed his feeding tube this morning and he's now fully feeding on his own the appropriate volume to gain and sustain his weight.  We were sent home with a variety of medications that will need to be taken over the course of the next few months but will hopefully be able to be reduced or eliminate down the road.  His incision is healing very well and his blood pressure is now under control to protect the new sutures in his heart.  We will have long term follow up appointments with his Cardiologist to monitor the Coarctation repair, VSDs and Pulmonary Valve Stenosis in his heart.  The Cardiologist is very confident these other defects should be non-issues in the future but they will all be monitored very closely.  It was so refreshing to see our Baby "cord-less" for the first time in almost two weeks!

Many people have reached out to us asking how this was not caught in one of Nash's ultrasounds.  With Coarctation, the valve does not start to close until after birth and this can start anywhere from 5 days up to 2 years from birth.  In Nash's case it was very early and the symptoms are hard to distinguish from regular baby issues.  Nash was born on Wednesday the 15th, we brought him home on Friday the 17th and we were back in the hospital on the following Wednesday the 22nd.  He was eating, sleeping and doing all the regular baby things through Monday.  We noticed a decline in his feeding and a significant amount of time sleeping but that was about it.  I consulted Nash's primary Doctor on Wednesday and she immediately said to bring him to Children's as this pattern was not normal.  Within 5 minuets we headed out the door never expecting the news we were about to hear.  In a matter of about an hour after arriving at Children's in St. Paul, David and I knew Nash would need heart surgery.  Our lives flipped upside down in a matter of seconds and we were on our way to Children's in Minneapolis to meet the best possible team in Cardiovascular care.  

I cannot say enough about the amazing staff at Children's and how they helped us find comfort at the most difficult time in our lives.  It was such an eye opening experience during our time there and you wouldn't believe how resilient these kiddos are.  We are so thankful to be home snuggling our Baby Boy!!!  Thank you for the continued out-pouring of prayers and well wishes, we truly feel blessed!!  Everyday we are so thankful we trusted that "little voice" telling us to call the Doctor when something didn't feel right. 

- David & Kim 

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