Monday, May 01, 2006

Gonzalez's Heart

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.

5 comments:

Kristin said...

I'm so glad to hear the good news about the reflux. And, although the news about his vocal cords may be discouraging, it is good to know that it should not affect his ability to nurse!

The prayers will certainly continue!

~kjl

mama rose said...

Hi Honey,
You have shown so much faith through all the ups and down and I am so proud of you. God has Jaden in His hands and His perfect will, will be done. But what that "will" is may depend on the prayers of his flock. So, I echo your request, that we continue praying for God's healing hands on Jaden. on his vocal cords. We want that little boy to laugh, talk and sing. Blessings be!!!

As I am in your home and take care of the kids, there is hardly a second that I don't think of you or just see you in your home. It is so strange not to have you here. Your energy, your personality is all around. The kids do miss you and I don't think they quite understand why things are the way they are. However, I want you to know that the kids have been very good and we find things that are fun to do. So we laugh and play. They may have some challenges because of all of this but I think they will also gain other gifts, they will have a broader perspective on the marvelous miracle of a baby, power of prayer, giving of themselve in intercessary prayer, patience, I could go on and on...

Well, I had better close so I can get to bed and be ready for another busy "Gonzalez family schedule". Whew.... You just sit down and you stand up again... and tell one of the kids that it's time to pick up the other. hehe... Steph, you just need a chaufeur, and life would be so much easier.

well nitey, nite
love you, mom

Steph and Mitch T said...

That is such great news about the reflux!!! I am so glad he's not spitting up. I know that time and time again when I read stories of HLHS babies they talk about reflux, so that is why I asked you about the spitting up. I think that for some babies it's aggravated at least by the formula, and then the doctors have to try different kinds of formulas to get the right one. I'm just sooooo thankful that you've stood strong to nurse Jaden. It's going to be so much better for him! How are you feeling about the paralyzed vocal chord? Have you called Dr. Magnuson? Even though he may not have any new information for you, you know that he will pray for you and he may be more encouraging!

I hope you have a GREAT day!!
Love ya,
Steph

Steph and Mitch T said...

Hey Steph, I took the liberty to email a La Leche League leader in the minneapolis area with your story and see if we can turn up any help. I know that even without the vocal chord thing it would be a trial to help Jaden learn to nurse. For some reason, I don't think that your therapist is going to be much help in that area. So if someone contacts you, then you know why. =)

Steph T.

kelly said...

Ummm...you mean that there might be a krueger/gonzalez family member that is quiet? Ooohh no. That is just not in the genes. I am sure that Jaden will be in competition with other members in no time. Robyn do you know anyone that could have some "speech" lessons with Jaden and teach him how to use his vocal chords?

Well, until that day comes, I will continue to keep Jaden's and your family's needs in my prayers in the meantime.