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May 7, 2017 Latest post:
1 hour ago
At his 20 week ultra sound our doctor and ultra sound tech noticed there was a questionable thinning of Noah's heart and was concerned at that time a possible ventricle septal defect (VSD). It was later confirmed by fetal echo of his heart that there was no VSD but structural abnormalities were present but overall too early to tell. We were recommended to follow up with another fetal echo of his heart 2 months later.
The follow up fetal echo was done when Noah was almost 31 weeks gestation and at that appointment he was diagnosed with idiopathic cardiomyopathy (type of heart failure). There was evidence that he had some pleural effusion (fluid around the lungs) and prognosis was poor that he had a better chance of dying in utero than making it to birth.
Our family was devastated of this news, especially because there was nothing we could do but monitor his progress and lots of prayers and positive vibrations. The outreach has been overwhelming and the love and support for Noah and our family has been unbelievable. We find ourselves feeling so fortunate and truly blessed by God with every prayer, hug, tear, smile, and kind words.
As the weeks have gone by since our 31 week check up we've decided to transfer Noah and Laura's care to Seattle Children's Hospital because we wanted to give Noah the best chance he could have to live. We have seen and spoken to many doctors and experts regarding treatments for Noah post birth and due to the function of his heart, any long term treatment seems only possible with a heart transplant.
With the recommendation of the medical team at Seattle Children's Hospital and University of Washington Medical Center we have relocated to Seattle at 36 weeks gestation. We have been generously provided a stylish RV from Michael Henry's dad, Gary and many gifts of games, snacks, décor, money and words of hope and prayers from family and friends as we plan to reside in Seattle on the campus of the Children's Hospital for the coming weeks.