Noah Noakes

First post: Oct 22, 2018 Latest post: Dec 7, 2019

[As originally written in July 2018]  On March 20th Brandon and I found out we were going to have twins!  Our emotions were all over the board with excitement and being shocked.  It was in January 2018 when Alex, our now 5 year old, started talking about 2 babies in my tummy - something we definitely just blew off as we didn't even know i was actually pregnant when his conversations had started about the twins.  Anyway, it was on May 29th at my 20 week ultrasound that it was discovered that Baby B (Noah) not only has club foot to both of his feet, but also has a very rare heart defect.  The u/s tech wanted us to have an ECHO done asap, so they were able to get us in to have it done the next day, which we were able to then meet with Dr. Martin, the heart specialist in St. Cloud.  The most recent diagnosis is that Baby B (Noah) has an extremely rare heart defect that involves 5 different defects, called Tetralogy of Fallot with putative Absent Pulmonary Valve Syndrome.  In medical terms the doctor most recently wrote, 

"CONCLUSION: Tetralogy of Fallot with putative absent pulmonary valve syndrome. There is at least moderate pulmonic valve insufficiency with marked left pulmonary artery enlargement appreciated. The aorta overrides the ventricular septal defect and there is good biventricular function. There is right ventricular enlargement seen. No AV valve insufficiency is appreciated. The peak gradient across the RVOT/main pulmonary artery is now at 25-30 mmHg."

Due to this rare defect, i will be delivering in the cities with surgery scheduled shortly after Baby B (Noah) is born. Baby B (Noah) will then be in the hospital of a minimum of a month during recovery - most likely longer. Also, due to Baby B (Noah) having multiple deformities, there is a chance he may have down syndrome, but we will not know for sure until he is born. The heart doctor wants us to have consulatations at both Abbott and at the U of M in the cities, which will happen in the next 2 weeks, as he wants us to decide where we feel most comfortable and confident in the surgeon(s) that will be working on our little guy after birth. We ask for as many prayers for Baby B (Noah) as possible. For him to stay strong not only in my womb but also after birth and throughout surgery and recovery. For Baby A (Lincoln) to remain his healthy self. And for us, as a family, to continue to stay strong through these life challenges.  Thanks for listening to our story! 

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