About Me

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Monticello, KY, United States
Hi! For those of you that don't know me I'm Jamie Jones and I've been married to Marc for six years. We have a four year old daughter Katie and expecting a son Kody! We are scheduled for delivery June 22, 2009 I've always been a private person and didn't want my personal life posted for everyone to read. But the other night I came across a blog that really made me think different. A few months ago we found out our son is going to be born with a heart defect. So researching trying to find out as much as I can I found a family that is going through the same thing and it has really touched my heart. Their outlook and faith in God was really what I needed that night. I feel like I was lead to their page for a reason. I've thought about them often today and decided to post my own blog. We have a lot of family and friends that are praying for us and this will help keep them posted.

Thursday, July 9, 2009

One More Day

I know several people are watching for updates. I don't get a chance to post updates every night. Today was a little better they clamped the echo machine to get a trial run to see how things looked. Kody's oxygen levels stayed up for one and half minutes before it started droping and the day before it dropped as soon as they clamped him off. They really think that tomorrow he'll have a better chance coming off the ecmo. They have been talking about closing his chest because the longer that he's open the higher risk of getting an infection. So they have been weighing that out with the other options. If they close his chest before they take him off the ecmo they'll have to move the connection to his neck. Which I really hate to have that happen. So we're praying they'll be able to take him off it tomorrow.

This has been an emotional roller coaster ride. There have been days when we left that we were so down in the dumps. This evening I feel a lot better and I really feel like tomorrow will be a good day. They did reposition him with the ventilator before we left and he looked so much better. The nurse said that his color was improving because his lungs were working more.

I really have to brag on the staff at the hospital. They have really done a great job and Kody has his own nurse around the clock that just takes care of him. Then there is someone that sits and watches the ecmo machine around the clock too. Not to mention the doctors that come in too. They have a pediatric doctor that stays in the PICU at all times too. When they try to bring him off the ecmo there is a room full of staff. They all answer any question we have and if they ask us to sit in the waiting room they always come out to talk to us. So we really don't feel like we are left in the dark.

Today Marc went and got Katie. We haven't seen her since Sunday and really missed her. Plus she helps take our mind off things and pass time by too. I'm so thankful that we have Eugene and Wilma to help take care of her. Plus all the other friends and family that have offered to help out with her. We took her to GattiTown to eat supper and play. It was so nice to see her so happy and excited to play. Hopefully we can be all home together soon.

Please keep us in your prayers. We all are struggling through this together. It's hard seeing your baby so sick and nothing that you can do to help. Katie is having a hard time too. She often cries to see her baby brother. I'll be glad to get this all behind us. I know God answers prayers and he has been our strength to get us this far.

We appreciate every thing that everyone has done for us. I can't express enough how much it means to us. If I don't repsond to your emails or comments doesn't mean that we aren't reading them. By the time we get in it's so late that I don't have time to get everything done. But it's nice to know that everyone is thinking of us. God has blessed us with a wonderful circle of friends and family. I don't know what we would do without you all.

4 comments:

Anonymous said...

"Dear Lord I come to you this morning asking you to be with baby Kody. Lord, please help him to be strong today. I pray that his little lungs will work perfect on their own and he can be taken off of the machine. Please be with mommy, daddy and big sister Katie as they anxiously wait on the outcome of today. Be with the doctor's, nurses and other staff assisting in Kody's care. Help them to have wisdom and knowledge to make decisions that will only benefit this precious baby. Lord we know you are the Great Physician and you can heal this sweet boy. I pray that your will be done. I pray that you wrap your loving arms around this sweet family and that they feel comfort that can only come from you. I pray all of these things in Jesus Name, Amen." I love you guys! - Misty

Anonymous said...

It's really good to hear from you all.Sorry,I missed you last night.We have been very busy with Brett in ball tournaments and not home a lot lately. Hopefully today Kody will be strong enough to be taken off the ecmo machine. It's a good sign that he was able to breathe on his own for a little bit. At least this is a positive thing to hold onto. I can't even begin to know what you all are going through. I know it would have to feel like you all were on a roller coaster ride. Just try to keep holding on to the faith that I know you all do have.

Know my heart is with you all. I'm eager to look at your blog,usually it's one of the first things I do. I know it's hard to keep it updated though,but much appreciated!!!!!Just do what you feel like when you can to keep us updated though! We understand,gal! I'm glad you all got to see Katie and see her enjoy playing once again and I know she's SO glad to be with mom,dad,and little brother. Hopefully someday very very soon you all will be able to come home. If you all need anything up there or at home please don't hesitate to let us know. We are here for you guys and our hearts are with you. With lots of love, prayers,and concern for you all. Steph

Anonymous said...

Jamie and family,
You all are such a special family. I can't imagine what you are going through. There are a lot of people praying for you and hoping we will soon get the news Kody is off the machine and doing great. He is such a precious baby. I love the pictures I just wish it wasn't under these circumstances. My sister said to tell you that all of you are in her prayers as you are mine. Please let us know if there is anything you need. I think of you all through out the day. God is good and I know he can reach his hands out and completely heal Kody in an instant and I don't doubt he will. You all take care and enjoy Miss Katie I know you all miss her and she misses you. May God Bless your family.

Love,
Gina

Anonymous said...

Jamie, I can't begin to imagine the anguish you and Marc are going through. We are praying for Kody and you and Marc and Katie everyday...several times a day. Remember God is BIGGER than anything and He is in control. He will give you strength during this difficult time. The trials we go through makes us stronger and strengthens our faith in God. It's easy for me to say, I know, but hang in...and lean on Him.
I love the four of you...
God is BIGGER....
Pattie

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