A Good day for Brayden

Hello everyone. Sorry I haven't updated for a little bit. Truth is, I have been in bed all day today. I'm in a flare and trying VERY hard to take care of myself. I'm having a difficult time getting he pain level under control. (I do not like to take narcotic type pain meds) So I have been resting as much as I can.

Brayden is doing well. They were able to close his chest today, and I am sooooo happy about that. They also tested his hearing and he responded, so that's awesome.

I don't have any other news, so this post will be a short one. Ashley is going back to Little Rock tomorrow so I will have more news.   Love and hugs!  M

Happy Saturday!

Good afternoon everone. I hope you all are well and having a wonderful day! It's gonna be a HOT hot hot one here in Arkansas today. Well, spring was nice while it lasted! Greg is shopping with Amy for her birthday gift. I haven't been up to a trek to walmart, so we cheated. She is going to pick out her gift. I did make her a cake this morning. Okay- I cheated on that too. I have several cakes that I baked when I was having a good day and then put in the freezer so on days like this when I am in a bad flare and don't feel up to baking, all I have to do it take it out of the freezer and frost it. I made pretty pink cream cheese frosting and sprinkled pretty cake decor flowers on it. Gosh I'm gonna miss her. They move on June 3rd. I just hope and pray Greg's ex isn't going to be a snot about Amy visiting. It's gonna be really hard on Greg.

The kids came home yesterday from Little Rock for some very much needed rest. Brayden is stable now, and Joey has to go back to work on Monday. He is the breadwinner of his little family and he's already been off for two weeks. Ashley isn't strong enough herself to stay there on her own. She landed in the hopital overnight once already. They plan to stay at the hospital on Joey's days off. I know how hard it was for them to leave the hospital without their little one. My boys were preemies and were in the hospital for quite a while as well......

Chris and Tiffany were with them at the hospital overnite as well and have been a tremendous support to Joey and Ashley.

I got to see pics of Brayden. What a cutie he is. I only saw him briefly before the flight nurse whisked him off to the waiting helecopter. So it was so nice to see him! The photos were taken before his surgery. As soon as I get some actual photos (they were still on the camera) I will post some so you can see what a cutie he is.
They haven't yet closed his chest. They tried the day after the surgery but his BP fell, so they will wait a few more days to try again. Poor kid. I wish I could trade places with him. He has a long way to go and will have several more surgeries (one or two more before he will come home) so pretty please keep him in your prayers!!

So, that's my news for today. Love and hugs!

More details on the surgery.

The surgery went well, but Brayden is not out of the woods yet. They did not close up his chest as he had swelling from being on the life support machinery. He has a sterile clear bandage kind of thingie over his chest but Joey said you can actually see his heart beating. They will wait a day or two for the swelling of his lungs, etc. to go down before they close his chest. They replaced one of his heart valves with a donor valve. It's very sad that someone had to die in order for him to get a new heart valve, but we are soooooo thankful that this family was so incredibly generous to donate their loved one's organs This is such an amazing thing and I can hardly find the words to explain how I feel. Joey said that they received info about the donors and they will send a letter to them thanking them for their incredible gift. I have always had that organ donor box checked on my driver's license although at this point I can't imagine what organ they would take since none of them work right anymore.  :( 

I don't drive anymore (My fibrofog is waaay too bad so I voluntarily stopped driving) but I still have that box checked on my ID.  I know that they can harvest skin for burn victims as well, so if I can just help with that, it would be wonderful. If you have never thought about being an organ donor, please do. You cannot imagine what an amazing gift you are giving to a gravely ill person and their families!

Brayden also has a type of gortex tubing (stent?) in one of his arteries to his heart that will have to be replaced when he is 4 or 5 years old. The thought of more open heart surgery for this precious little one makes me sad. But alot can be done in research in 4 or 5 years time! Thank heaven for the American Heart Association! ( I have been an advocate for them for several years now since I developed heart problems) In this very lousy economy the donations to the AHA has gone down quite a bit. So if you are so inclined to donate to a great cause, this one is very near and dear to our hearts. And I mean that literally!

Well dear ones, I am beyond exhausted,and will stop now. I will write more tomorrow. Love and hugs!   Marlene

Open Heart Surgery is done!

Brayden had his open heart surgery today and did very well! In just a short while he will be in recovery for about 1 hour or so. Thanks so much for all your prayers and emails. You can also leave comments here as well. They mean so much to us. Please continue to pray for him that he has a speedy recovery from this! I will continue to update as he progresses.

I hope you all are well and not having nasty storms like we had last night. We got just shy of 2 inches of rain!

Love and hugs!  Marlene

Update on our little one

Brayden's surgery has been cancelled for tomorrow. He has fluid in his lungs, so they will wait a bit. Please keep praying hard!!!

A New Day

Well, last night was a rough one. Sleep did not stick around for very long, and I am tired. I was able to catch up on some emails and website stuff, so that was good. I don't have any news on Brayden yet today. But I know Ashley or Joey will call.

I think Buddy Dog and I will head outside for a bit. I have some plants I need to get in the ground and seeds to plant and want to get it done in the next couple of days. Later in the week our weather will be hot again.

My herb garden is busting out at the seams and the chocolate mint and lemon balm needs to be cut back or they will take over. I want to pot them up and put them on the patio, but will have to wait for Greg to get home or he will have my head.

I have some new craft projects in mind and will be working on them to keep my mind busy. I have always had a love for all things vintage or Victorian, and this will be the theme. While I do enjoy designing for my candy wrap/printables website, I do miss the crafting , and having "craft day" with Amy has given me the desire to create again. Lord knows I have enough crafting materials! LOL!

I am tossing around the idea of another website for these crafted works. We shall see.

Enjoy the day precious ones!  Love and Hugs-M

Update on Brayden.

Well, it has been a rough few days to say the least. I hate being here in Mountain Home and the kids at the hospital, and I can't be there. I HATE IT. Why oh why does my body have to be broken down and I cannot be any help whatsoever?  But, This is no time for feeling sorry for myself and having a pity party........

I promised an update on our sweet little one:

There were many things we did not have an awswer for. And we are still waiting on test results, etc.  But, we now know his lungs are fully developed. He has gained 9 oz since birth. He's now 7lb. 12oz. He DOES have vision. But he will probably need glasses. He has a cleft lip and palett. We do not now about his hearing right now.  But we do know our Little Man needs to have heart surgery on wednesday due to a deformity of his heart valves. Two are fused and need to be separated, and will need to be reattached. And what they will use, will have to be replaced again. And since it's hard to understand through tears and big words docs use and don't explain well, I can't tell you why right now, but every 10 years he will need to have surgery to replace it again. I don't understand yet if it's an artificial valve, or something else. But I hope to find out the details tonite. He had a traich tube put in his throat to help him breathe.

My family sat me down two days ago and stressed their concern about me making the trip to Little Rock. They are worried about my heart condition and since after Brayden's birth I had severe chest pain and it took 3 nitro pills to calm it, they are worried and don't want me to go. I argued a bit as I cannot imagine being there. But I also understand the they are worried enough about Brayden, and don't need to be concerned about my health as well. but my heart is breaking. As the grandmother you want to be the protector, the supporter, the rock for your children. And it's so hard when you can't be there for them and protect them from the heartache and worry.

But my faith is strong. And I know that our Lord will be there guiding the surgeons hands and holding little Brayden in his arms while the doctors are taking care of him. It is from HIM that we will gain the strength we need to be strong for our little one. So even though I will not be there our FATHER will. And that gives me comfort.

Please know that your emails mean so much. I read every single one. And I am sorry I haven't updated on my appointment at the cancer center. It just hasn't been as important as Brayden to me. But, I still don't know yet if it is breast cancer. I got a 2nd opinion and spoke to the cancer doc that does my iron infusions (which I will have thursday am) and he is concerned. So he is sending me to have a a biopsy so I will get a definite answer and not wait another 3-6 months to re-do the ultrasound..Gosh I hate Medicare and their wait and see attitude.. (but I am thankful to have it as well)  I promise I will let you know the results as soon as I get them.     Love and hugs!  Marlene

Brayden is here!

Brayden has finally made his appearance! Here is his info:

Brayden Alexander Fliege. Born May 11th @ 5:40 pm.  He weighed 7lbs and 3 oz and is 18.5 inches long.

Parents are Ashley McFarland and Joseph (Joey) Fliege

Brayden was in critical condition and was flown to Children's Hospital in Little Rock, AR about 3 hours drive from Mountain Home. We are still waiting for test results to find out what exactly has caused his health issues and have been told it is a chromosome disorder. I will keep everyone updated through this blog as I just can't keep up with the calls and emails. Please pray for this precious little one. He is going to have a long road ahead of him. Please also pray for Joey and Ashley. They are devastated and so worried about their new baby. 

 Keep checking back for updates. We are having a storm now so I need to get off the computer, but will update more tonite.  Love and hugs,  Marlene