Wednsday 12-12-07

I know a lot of people do not use this blog anymore since we are hopefully in the clear so to say so I do not post too often anymore. I am going to keep the blog up if for no other reason just so when someone asks if I have a picture of the kids I can get out of trouble as long as there is an Internet connection close by:) Jordan seems to be doing better but is still quite a bit smaller than her older sister (well, 5 minutes older anyway). She weighs in at 13 pounds right now and Darian is almost 17 pounds so she still need to catch up. All in all she is a very happy baby who enjoys life to the fullest smiling at everything all of the time. I'm sure with a little work you wont be able to tell them apart in the future.
Darian is rolling around just like Kaden did and kinda crawling so it wont be long before we will have to start raising everything up out of baby reach again.
Kaden is growing up so fast. It seems like we have spent so much time with the the twins he kinda got ignored for a little while even though we told ourselves we would not do that. We will have to make up for that this summer.
Anyway all is good for now and we think in a year or so she will have no limitations or side effects from all of this.
Thanks once again to all of you for all of your help. Have a Merry Christmas and a Happy New Year.

10-25-07 Doing much better...

Hello everyone. A lot has changed since the last time I posted. We went to the doctor on Monday, October 15 and we're glad to say that Jordan weighs over 12 pounds now. The doctor also took her off of two of her medicines which leave her only with two medicines to take. One for the heart and one for acid reflux. This is a relief for everyone, especially Rachel.

She is looking a lot better and starting to look a lot more like her sister now that their weights are closer to the same.

We are looking forward to the day when someone does not have to get up every 3 to 4 hours. We won’t know what to do when that happens, it will be like Christmas.

Other than that things are going much better around here and once again we would like to thank everybody who is helping us through all of this, we could not have done it without all of your help.

As you can see in the video, not much gets this little one down. She has been smiling since day one through all of this.

Tues 9-25-07

Well Jordy went to the Doc today and I'm sorry to say that she is losing weight. Not a lot, but she has only gained 1 oz. since her surgery. We are going to call the other doctor (the one that was going to do the hernia surgery) tomorrow and see if she can give us any answers to why this is happening.

I think everything is going to be OK but it seems its gonna be a longer road to recovery for her than we expected.

On a good note she still always smiles and loves her sister. They have a blast when we put them together as you saw in the video.

Thanks for checking up on her and I will keep posting as often as I can.

9-20-07 report

I haven't posted for a while because I was waiting to hear from the doctor. We too Jordy to the Dr. last week for a checkup and we got some news we really didn't want. I appears she still has a hole in her heart ,or a leak around the patch they put in I guess would be a better way to put it.

They are not being to detailed in what they tell us other than there is still a murmur and it is leaking around where the patch was put in. What we do not know yet is.......is this going to go away?,will she need another surgery?how long until we know more? etc. etc.

I will post the answers to these questions as soon as we get them ourselves. Other than that she is happy and has good color and is going weight.

We were told last week that is was OK to take her out of the house but as of today's visit we are being told that she might have to have a nurse come in every mth. and give her RSV shots for the next 6 mths. and she was to stay home away from any place where she could get sick.

Anyway we are all doing OK and thanks again to all of you. Sorry I took so long to update the blog.

All is well 9/10/07

Things are going well here. Jordy is drinking bigger bottles than she has even since birth. She is putting away 100 cc bottles. I know that's not much but compared to the 15 to 20 she was doing last week its a lot. I suspect she will start packing on the lbs. pretty quick here in the near future. We will have to get them tattoos to tell the apart when that happens because I use their weight to tell them apart now.

She still has to take pain meds every 4 to 6 hours but that will soon pass and she will be running with the pack if not leading it. Thanks again to everyone who has helped us through this, we appreciate it very much.

Things are going well here. Finally got some good sleep. Jordan is doing well but still requires a LOT of meds and pain killers. I think things are going well enough that I will go back to work a week early. I was planning on taking 3 weeks but will probably go back next Thurs. Anyway just keeping anybody posted who wants to know.
Heres a older video I found when they were first born that I had forgot about.

Home sweet home

I never knew how much I loved my house, never gonna complain again. We are home at last and Jordan has slept the longest she has in a week,we can tell she is glad to be here. Anyway gonna try out a real mattress tonight and get some real sleep. We are all doing fine and we made it home safe. goodnight

Not gonna get into this one too much on the blog but we were dismissed 2 hrs ago but still have no medicine. It seems it would cost too much money to have them filled here and everything is closed today so our nurses are bending over backwards and arguing with our insurance company to figure out a way to get her meds. GOTTA LOVE INSURANCE COMPANYS! Anyway,be home eventually,We hope. P.S no copywrited logos were altered in the making of this post,but we all know who we're talking about here....

Were comin home! 9/3/07

YEEEEHAAAAAA the doc just came in and said we could start packing our stuff up. We should be headed home by noon today. They just gave us a bunch of paperwork of stuff we have to do when we get home and they are filling her 5 perscriptions so it looks like we will be busy for a while even after we get home. I dont care how busy we are as long as I can trade this midevil torture device I'm sleeping on in for my bed,now I know how Quazimoto felt.

Anyway I will keep posting her progress even after we get home until she is 100%. I know we keep saying this but thanks once again to EVERYONE who has helped us since the twins birth. Its been a lot of work and I know we could not have done it without all of your help. See ya in like 6 hrs!

Sunday 9/2/07

Ok,a little setback as of today. We will not be coming home today (which is better in my opinion for her since its a holiday weekend). She is having trouble keeping food down again. Last night she would not eat but a couple of sips at a time. The doctors came in today and they think it is acid reflux from the trauma of the surgery. They said it wont be there forever,I hope not.

The doctors said from a cardiac standpoint she is doing great and we would be headed home if it was not for the not eating issue so thats good. She looks good (pic is from this morning) and actually smiled yesterday. That was nice,it was the first time she had really smiled since we have been here and coming from a girl who is ALWAYS smiling it was nice to see that.

Anyway will keep you guys informed whenever any new news pops up,thanks for checking up on her and thanks for everything else too.

Saturday 9/1/07

Alrighty.............. . . .We finally got her to hold food down around midnight last night. We had to feed her like 5-10 cc (basically 1 swallow for us) then wait and repeat process until her stomach settled down enough to hold more. After hours of building up to a full 2 oz. she is looking good to go on the whole eating and not throwing up so thats awesome.

They came in and took the drain tube out a min. ago and gave her some morphine so she is in lala land watching Baby Einstein right now , seems to be enjoying herself at the moment :) They said we could go home tomorrow if she remains stable tonight and no fluids build up where the drain used to be. I am happy about that and really want to go home myself but I'm not to keen on going back to Wichita on a weekend holiday with a sick baby because im sure every good doctor is yelling "fore" this weekend so we will discuss that tomorrow with the doc.

Well,thats about it for now. We are all fine and cant wait to get home,she still has some recovering to do but at least she will be more comfortable at her house. I will keep posting even after we get home until she is 100%.

We would like to thank everyone who has helped us in every way. Im not gonna even try to name all of you because SO many people,churches,companys,etc have helped us I'm sure I would forget someone. Thank you all and you will never know how much we appreciate it.We could not have made it through somthing like this without good friends and family helping us and we want to thank everyone again and again.

This is a pic I took about 30 min ago. She is finally looking relaxed and more like Jordy again.

Once again,thank you all and we will be home in a couple of days we hope.

Jordan resting

Friday afternoon 8/31/07

Had a little trouble today with her holding food down.She has not been able to hold down any of her food all day so they put her on Zantec for acid reflux. We have another doc coming in later today to see why this is happening,if she keeps spitting up she will be going back to tube feeding.I hope that does not happen,she was so happy to get rid of that.
With that aside the heart issue is going as planned and all is well in that area.
I'm trying to figure out how to get a short video of her on here so check back, I'll get it...

Friday 8\31\07 Good News

Good news. Doctor just came in and said she was doing really well. Now we are down to 1 tube 1 iv and no wires. She is relieved I'm sure. They said we might be going home Sunday! Thats 2 days less than the min. stay they told us.

Friday 8\31\07

We finally got out of IC. The people were great up there and really great and took good care of Jordan.The regular room is so much more convenient and there is a place to sleep and shower in here so MUCH better for all of us. Jordan is eating from a bottle again as of last night.We went from 6 tubes/iv's and a lot of wires to 1 drain tube,1 iv, and not as many wires so she looks 1000 times better in that aspect.She still has a drain tube to drain fluid from around the heart and she still has 1 iv to give meds and take blood but that is a lot less than she had in IC.
We have been able to hold her as of yesterday which is nice for her and us.I cant believe how fast her color changed after the surgery,she has always been pale compared to Darian but I think she will catch her in a day or so.
The doctors say her weight will pick up very fast in the next few weeks so look out sis.They took her off oxygen last night and she is doing fine on her own. She did not need any all night and is still doing everything on her own. YEAHH!! I have some pictures I will post soon,I brought my camera and laptop but no cable. Scott is bringing me the cable today so I will post them later this evening. Anyway will keep you posted and thanks for all of your comments and prayers.

Thursday 8/30/07

Jordan's surgery was Tues morning at 7 am. It took about 2 hours which was 30 min under the average time it's supposed to take. The surgery went great and she was moved to intensive care right after.

She was under until Wed. night. They pulled the sedativies back then and she woke up.She is awake now but on a LOT of pain meds (morphine,oxycodone,and somthing else that starts with an a).

I think we are getting a regular room tonight or tomorrow so we can get out if IC. That will be nice because more than 2 people can go back at once and there is a couch type thing in there.

Kaden went back to wichita with dad and Jeanie this morning.He is gonna hang out between Dad and Moms for the next couple of days,I think he was sick of hotel life.

Anyway I figured this would be an easy way for all to keep up to date and I only have to type it once so Yeah for me for being SOOO smart! (just kidding,my spelling is that of a 5 year old so i cant be too smart,Dont Be Judgin) I will update this as often as I can so check back whenever ya want. Thanks to everyone who has helped us out in every way.



Eddie Rachel Kaden Darian and Jordan