????????????????

We have no answers at this point. Isabella made it through cath lab just fine. The aneurysm is as big as her heart. I can actually see it pulsating from her chest!!! She has increased work of breathing and increased congestion. She is on oxygen now to help keep her sats up. It seems like cardiology would like to have the surgery done as soon as possible. We are getting mixed word about if it will be tomorrow or if they will wait until Monday. There are a few concerns. She is on antibiotics, because she did have a little bug grow out from her trach cultures. So the problem is, they don't like to put kids on bypass if they are taking an antibiotic. However, if it is emergent, they will take her to the OR regardless. Second concern, this thing is huge and it is right under the sternum. So this makes it a bit tricky to open her up without rupturing the aneurysm. I just got done talking to her intensivist and she said she really thought they would go ahead and wait until Monday. She did not see any immediate danger and need to open her up right away. She said "these things just don't rupture" I guess everyone kind of knew just how big this thing was except Matt and I. So I will update just as soon as I get word on when surgery will be.
By the way, we did get her baptized this a.m. However, I still can't get the pictures off my camera. I don't know if I am going to be able to either. If not, I will just have to post them when we get home. But she looked so cute. She had on a crocheted christening gown and Tracy the chaplain brought her a bear that says prayers. She held onto this little blue rosery the entire time. It was so cute.
I will update soon!!
PRAY, PRAY, PRAY

Mixed Emotions

Well my computer is being a pain so I can't get any pics uploaded at this moment. I am working on it. I have a cute video I want to show. I bought Isabella some balloons today and she has been hanging on to them and bouncing them around. It is so cute.
I am starting to notice some problems with her and this aneurysm. She is coughing like crazy and she just coughs and coughs until she pukes and poops. She has been doing this but it is worse now. She started to spike a temp but it went back down. They don't want her to get sick at this point because she needs open heart. They don't want to start antibiotics for a just in case because then that would delay them doing a heart cath. I tell you I was optamistic but then I realized that things never go as planned. I am just sooooo scared right now. I am scared that if she is sick that will put off surgery. I up until this point kind of forgot just how fragile she is. Yes, it is always there and I do know that she is at risk for just about anything, but she has been just so strong for so long. Well now today with her starting to show some signs of something wrong, it just brings me back to reality. Isabella is sick. Her heart has problems. I know that cardiology seems very optamistic about the surgery, which is good, but I am scared. I am scared for them to cut her open again. I am scared of a super long recovery again. I just don't want a repeat of last year. We were just really getting used being home and the girls were in a routine, Madison has not been having any nightmares for a few months. But now here we are. It is just hard not to think-IS THIS A REPEAT OF LAST YEAR!!!! Because I don't think I can handle it. I am praying so hard that she recovers quickly and that she goes home and stays home for a very very long time. So there it is all of my mixed up emotions. Hopeful, optamistic and scared!!

I don't know if everyone realizes it or not, but the family we have been requesting prayer for, the Boeckmans, are actually here in the same hospital as we are. What is crazy about all of this is that over the last few months Amy and I along with Micah have been this great support system for each other over the blog. Amy and I found each other because of Micah and Gabi's story. However, Amy and I have never met. So, we are hopefully going to get a chance to do that very soon. It is crazy has things work out. Out of all of the times we could have ended up here, it is when Ava is here on ecmo. I am sure that as we have been supports for each other over the blog, we can now be supports for each other here at CMH. I tell you, God always has a plan!! And as always please keep Ava in your prayers, she is still fighting.

One last note, we are going to have Isabella baptised tomorrow. It was one of those things that we kept meaning to do, but for some reason or another it always fell through. So we will hopefully have pics of that when I figure out why my computer won't let me upload.
Enough rambling for tonight. Thanks for all of your thoughts and prayers. We need them and will take all that we can get!!

Okay one more last thing, Isabella is going to be here for a few more weeks so if anyone would like to help with decorating her room, we would love for you to send drawings, cards, or anything that will liven up this place!! We can hang stuff on the walls. If you would like to mail them:
Childrens Mercy Hospitals
PICU
Isabella Gudde
2401 Gilliham Road
Kansas City, MO 64108
P.S. Isabella loves to get mail!!!

So really that is it!!! Goodnight to all

Surgery Update

We have some new info this a.m. Isabella's surgeon is actually coming back tonight. So that is the first good news. They are going to do a cardiac cath on her tomorrow at 3:00 p.m. That is just so they can get in there and take a look around to make sure they don't have any surprises. Then it is up to her surgeon, but she may have surgery Friday morning or Monday. It at this point looks like they are leaning more towards Monday but they said there is a chance they will operate on Friday. Matt and I are staying positive. They said this is something she was going to have to have done in the next year anyways, so why not do it now. Isabella looks healthy and happy. We are just hanging out here in the PICU. We have yet to get a room at the Ronald McDonald House, but we are hoping for one soon. We are both very tired. Isabella had a bit of a rough night. They went ahead and drew surgery labs so if she has to have it emergant, they already have a type and cross for blood. They stuck her and stuck her. I hate it but I know it is necessary. She just gets mad when they stick her and she clamps down, so that makes it hard for them to get into the artery. But finally after a couple of art sticks, they got what they needed from a scalp vein. Her labs look great, so all in all she is pretty healthy.
So let me just tell you how I feel right now!!! I am scared but positive and faithful as I said. It breaks my heart for her to have to go through this, but at least it does not come as a HUGE schock. Let me tell you Matt and I are feeling so loved up here. All of our family is so far away and we feel the love from them, but the massive amount of people we have her in KC now is just amazing. The nurses and other hospital staff that are here with us makes this so much easier. So thank you guys!! Also I am missing my other two girls like CRAZY. I can't stand being away from them. I am NEVER away from Madison, so it is killing me. Everytime of think about Abby and Maddy I just start crying. I have told them sis has to have surgery to fix her heart. They seemed to understand as well as you could expect. So that is about it for now. I don't really know anything definite. As soon as I know anything, I will let everyone else know. I will try to post some pics later.

We are facing another open heart ASAP

Well, it is not pneumonia. They did a chest x-ray today and they saw something that was concerning. So they admitted her to the PICU and then took her down for CT scan. Well it turns out she has an anurysm on her heart. It looks to be right at the conjunction of the piece they put in during her truncus repair. It is none as the homograft. So they won't let us go home. They said they can't risk her going home and bleeding out. Her surgeon is out of town until Monday so we are sitting and waiting. They said they don't know the exact date, but she will have to have open heart. I am going to guess for next Tuesday since her surgeon is gone. Unless they feel it is necessary before then. So please start praying. I am not super concered at this point. We knew we would be having open heart sometime but not this soon. It is a big shock. It totally stinks and I am not happy about it but I feel peace. I feel she is strong enough for surgery and I pray she has a quick recovery this time. One really good thing is that she has a trach and the vent. It will make surgery that much better. So anyways I don't know any other details. It will depend on more tests about how serious this may be. I think it depends on exactly where the anyrysm is located. All I can say at this point is pray pray pray. I think it will be at least two to two and 1/2 weeks before we come home.
Also please continue to pray for little Ava. I am hoping we can catch up with her family tomorrow and finally meet!!
Megan

Prayers for Bella

Okay Bella is doing really crappy today. She is congested like crazy. Her sats are horrible and she is just really sleepy and not feeling well. I called CMH and they want to see her today. They told us to pack a bag just in case they keep us. Which it sounded very likely. So please pray. I think we are looking at possible pneumonia. So we may be in KC for awhile. I will post later. We are taking the lap top so we should be able to keep everyone posted.
Love to all
Megan

Prayers for Ava

Okay we need some serious praying. Micah has receieved a text from Amy that indicates little Ava has made it through surgery. However, they are putting her on ecmo. I know most of you don't know what ecmo is, but it is a heart lung machine that does the work for the body. It is really common for premies who have underdeveloped lungs to go on ecmo. However, they are using it more for other reasons. I hate it say it but ecmo is really really scary buisness. I know it is something Matt and I were fearful of all of our months in the PICU. You hate for anyone to ever mention "ecmo" So this is why Ava really needs your prayers. As we have seen with Isabella and with Amy and Nate's little guy Kaden, God does perform miracles. So Lord we are asking you for miracles for Ava. And Lord we are asking you to give Amy and Nate the strength they need to be there for Ava.
Please stop by http://kadenboeckman.blogspot.com/ to let them know you are praying and thinking of them.
I know Matt and I got alot of strength from the numerous people who just said "we are praying" or "you are in our thoughts and prayers" Trust me it helps!!
Thanks
And Amy and Nate, Matt and I are praying!!

Change of Plans

Okay so we are not headed to KC this morning. We have just had a major ice storm so we are staying home!!!

Headed to KC tomorrow

Well we are headed to KC in the morning for PT, OT and special care clinic. That is if the weather holds. It was a pretty uneventful weekend. Isabella is doing well and is as cute as ever. She has been congested for some time and I am not really sure on how to get her lungs clear, but other than that, I think she is doing okay. All smiles all the time with that girl!! Well I will hopefully get a post in tomorrow evening with a Dr. report.
Also don't forget to pray for Ava really really hard tomorrow. Tomorrow is the day for her open heart surgery. So please remember her and her family tomorrow.

I Survived!!

When I came home Tuesaday after surgery, this is what they had done to my sweet little baby!!

Bella in her new footie pajamas. Aunt Stephanie altered them so they would work with her G-tube.

Well I survived surgery on Tuesday. I was not expecting it to lay me up for this long. I have been completely miserable for the last few days. I am just now able to feel comfortable enough to sit at the computer. Bella is probably thinking, gosh mom you big baby, all you had was your gallbladder out, I had open heart!!!

The worst part, is that I can't pick up Bella. She is over my weight limit. Thanks for all over your prayers. I actually did not have any stones in my gallbladder. My gallbladder just stopped working.

Please keep prayers up for little Ava. She is having open heart surgery on Monday. She continues to do well and Amy and Nate are still getting to hold her and snuggle her!!

Welcome Ava!!

On Friday evening, our blog friend Amy gave birth to little Ava Rae. Some of you may know the Boekmans' story, if not here is a very short little overview. Amy and Nate have one little boy named Kaden. He was born with a hole in his diaghram and he is on the ventilator at home like Bella. Now they have Ava. She has Turners Syndrome and Hypoplastic Left Heart Syndrome. (Amy let me know if that info is not correct.) Anyways she will undergo open heart sometime next week. She is doing really well and is at Childrens Mercy. We are so thankful that Ava has arrived safely. So please stop by their blog and wish them well and send some prayers their way. To see this amazing family just use this link http://kadenboeckman.blogspot.com/

In other news, Isabella is doing great. She is feeling well and it is suppose to be nice tomorrow, so we are debating about taking her to Matt's sisters for the super bowl. As of right now, it looks like we are going to go. That also depends on how I am feeling.
So I think that is it for now. I am going to try to post some pictures later today.