10 days old :)

Today has been a hard day for me. I know how sick Noah is and I have known that there was the possibility that he would be this sick for the last 19 weeks and 4 days but I guess I held on to the fact that maybe he wouldn't be. I have read every single article every single website that I can possibly find on ebstein's anomaly. There is not much out there. In fact there is nothing out there on the combination of Ebstein's and pulmonary atresia. I think I have found research on 2 or 3 cases other then Noah's. His combination makes up for less then 0.25% of all congenital heart disease. Which makes it even that more difficult to understand. Most of the nurses have never taken care of a patient with it and neither have the fellows. The cardiologist that had been on call this week at least understands it and why noah's body does the things it does. I don't know how many other ebsteins patients he has seen though. That's what makes this so difficult is no one knows. Noah was not expected to survive till birth and then he proved everyone wrong at 36 hours old by surviving open heart surgery. Only God and Nosh know the plan they have for his life. Only they know how long it will take him to come off the meds and the ventilator. The doctors may try to figure it out but Noah is in control. God has an amazing plan for this little guy and I can't wait to see what it is.

I got to hold him today for about 60 seconds while the nurses changed his bed which made my day. I have waited 9 days to hold more then his head and hand. I can't wait till I can keep him in my arms for hours :) no matter what his daddy says I don't think he will ever get put down ;)

I realized today actually how sick he is. I have said since day one I will do what ever I have to to get him home. If that means a baby with a feeding tube or a vent or oxygen. Then that's what we will do. What ever Noah needs we will do. It might not be exactly what we had planned but it is out of our control. But to hear someone say out loud to me that all if these may be a possibility makes them all too real. No one is saying any of these are a possibility until weeks down the road but still to hear someone else tell me yes this might have to happen scares the fuck out of me. I still will do whatever I have to to get him home.

I know we will have bad days and good days but up to this point we have had so many good days it's hard to except the fact that he WILL have bad days.

Noah is on the vent still and we are slowly weaning his settings. He will tell us when he is ready to come off. Our biggest concern currently is his heart and the complete heart block that he is in. We are running out of days for it to fix itself. I know in the big scheme of things a pacemaker is not that big of a deal but my sweet little boy does not need another surgery. We are still on a calcium chloride drip to help his heart contract and fentanyl to help keep him sedated. He has started feeds of breast milk through a nasal tube. He is tolerating them well and as we increase those we are decreasing his TPN and lipids.

I just can't wait until we are all home and under one roof. I need all my babies and my husband home :)

Please continue praying that we can find noah's happy balance of meds so we can get him off the vent and home. We still have a mountain to finish climbing but I know when we get to the top the view will be beyond amazing :)

Oh I forgot to write that Makayla and Colton got to meet Noah on Thursday for the first time :) they ofcourse were in love with their new little brother and can't wait to bring him home and spoil him rotten too :)