Updates from day after delivery

Thank you all for praying and thinking of us. I will be posting updates or changes here. I have had an overhwleming amount of phone calls and messages. Each one of them mean the world to me, but I need to be with Ethan and cannot take our phones with us into the NICU. So I figured what a better place than here. If you are new to my blog, please read my 1st entry. It will explain everything...

On 8.17.12 started our family's journey along Ethan. He remains so strong. He is in the NICU at Riverside and will not be going home with us as we are d/c'd later today. His little heart & lungs are requiring additional oxygen. They have been able to wean this down to 50%. He is not taking well to bottles but he will briefly latch on and off my breast. His mouth is very tiny and we have some difficulty with this also. He is dehydrated so they decided to place a feeding tube into his nose that will be directly in his stomach to increase nutrition and hydration.So between me, bottles, and bolus feeds we hope he is headed in the right direction from that standpoint. 

They did a repeat echocardiogram (ultrasound of his heart). We had one done on him while I was pregnant which confirmed the Complete Balanced AVSD (described in an earlier post). The ventricular defect is much larger and pulmonary hypertension (high blood pressure in the lungs). They are going to see how he does through the night (so far well). They make rounds with the team of nurses and doctors at the bedside in the am, so we will know more of a plan at that point. Mainly if he needs to be at the Childrens main campus where his Cardiologist will be.

Matthew and I are trying to be as strong as we can. He has been my rock throughout this whole journey. He has been by my side since day 1. I love him more today than I bet have.

Eli got the opportunity to meet his little brother. I have been anxious to see my not so little boy. He was so nervous, but by the time he left he was kissing and patting his back. It was precious. I will never forget his smile from ear to ear, his little nervous giggles, and the sparkle in his eyes. He wasn't looking at all the tubes, bells, and whistles. He didn't see his features of Ds....

Eli saw his baby brother Ethan who he loves so much already! As Eli was talking about his beautiful light brown hair, eyes, nose, mouth, counting his 10 fingers and 10 toes. I looked through Eli's eyes and for the 1st time I saw my son, Ethan Matthew not a diagnosis...