On August 29th, Ruth Elizabeth was born at 9:47pm at Magee Women’s in Pittsburgh. 5lbs 1oz. It was an extremely hard pregnancy with lots of unknowns. I was hospitalized for the 2 weeks prior to delivery to keep baby and myself in a safe place for as safe of a delivery as possible.

She was not able to breathe on her own at birth so she had to be placed on a ventilator and has been in the NICU since.

Things have been such a whirlwind from there. She was transferred to children’s hospital NICU for concern of her needing surgery due to not being able to pass stool. So we arrived at children’s on Monday. Unfortunately it was found that her colon and entire small bowel are non functioning. She has a severe form of Hirschsprung’s Disease. Which is rare in general and the severity of her case is extremely rare. Surgery was performed and she now will require life long IV nutrition. She also has Congenital Central Hypoventilation Disease (Haddads Syndrome). If this is the case, she will also likely require life long ventilation. Her case is 1 in a million!

Pray for us. This has been an incredibly difficult time for us. Many difficult conversations. Pray for God to give us very clear answers as we have very difficult decisions to make. We want most for God to be glorified and for His plan to be carried out fully. We do not want to get in the way of His plan for little Ruth. We trust fully that despite the sadness we feel, His plan is good and He will carry us through. Pray for our other children as it’s been a long several months for them. Pray for strength for all of us. Pray for comfort for Ruth as her little body has endured so much. She is just the sweetest