This weekend was hard but nice. We had a bunch of bad nurses for Jaden. They made many mistakes with his feedings and just did not really seem to know what they were doing. I will not go into detail because there is just to much that I have to complain about and I just don't have the energy. I will be talking with the charge nurse tomorrow about all of our issues.
Sal and the kids came on Saturday and left Sunday and we got to spend some good time together. It is very hard with the kids here though as they are so over stimulated and have so many emotions that they are trying to work through. So I took the kids back to the RMH and Sal stayed with Jaden for about 5 hours. It was nice for both Sal and I to switch spots. The kids and I just hung out and played on the computer and with toys. They have been very sad to be away from me and are having problems with many areas at home because of it. It has been very hard for all of us. Because of this, I asked mom to stay longer this week to help with the kids. Thank you mom so much. I know it can be very exhausting taking care of them. I love you!!
Good and bad news with Jaden's tests today. The first one was to check for reflux. This one I was very nervous for as I really did not want him to have any of these issues. This would definitely affect him not eating from the breast. They filled his stomach with Barium which helps them see with x-rays and then they rotated him to see what happened in side of him. They saw no reflux with 50ml but minor reflux with 60ml. They were extremely shocked and pleased to see this outcome as this good outcome is very uncommon in heart babies. This is very good news as he gets 52ml. So he is having no reflux at these amounts and as he grows this should not be any different. So yeah!!!
ENT came and scoped him. They found that his left vocal cord is paralyzed. From how they explained it, the left vocal cord starts in your head, goes down the throat and wraps around the aorta and up to the throat. They said that when having heart surgery, it is very common for this to be affected. What happens is the vocal cords open and close and vibrate against each other. The left one is staying open all of the time. This is usually not permanent damage but they will not know for sure until he is a little bigger. They would re-scope in 6 months. They said if it is just damaged, it could take up to 2 years to get to normal. So I guess he will be a quite boy for awhile. If it is permanent damage, we will talk at a way later date to see what options we will take. They said that his aspirating when drinking most likely is being caused from this. They told me that in adults, they have them turn to the left and it will help close the vocal cords so they can drink or eat and not have any problems. So my solution for this new problem is to have Jaden turn his head to the left while nursing from me and then there is no reason I can not nurse once he gets a little stronger.
So I guess the bad news is one with a solution for the time being. We do need prayers though for his vocal cords to be temporarily damaged and not permanent. And we need prayers for him to be able to eat with his head turned to the left so he can start nursing soon. We have shown everyone through all of this the power of prayer. We have over come so many things and have worked against the odds for many things. I make it very clear to everyone that it is because of all the prayers that Jaden is getting and this is why he keeps being different then the average heart babies that they see.
Keep the prayers rolling. I love you all and am so grateful for your continued love and support. We have meals coming to my family at home, cards and money for vending machine and coffee shop have been sent to me, church bulletins for memorabilia talking about Jaden and CD's of some services have been sent and of course family and friends helping out with the kids. This all means so much to us and we just thank you all!!!!!!!!
Hugs and kisses, Steph
p.s. Steph, Jaden does not spit up or throw up at all.