No earlier than Monday

We will not be going home over the weekend for sure now. Isabella still has some fluid on her lungs from surgery. They increased her vent settings some today. It has really helped her. I think they just pushed her a little too hard. But she is doing great. Breathing a little too fast but doing okay. The girls are coming up this weekend. I think we are going to go over to crown center for awhile tomorrow. It is suppose to be nice so I think it will be a good day for an outing. So the plan is Monday. But it will only be Monday if she gets her breathing under control over the weekend. I don't really have too much more to report. Thank you all for your continued support and prayers.

Chest Tubes and Staples are Out

So chest tubes and staples are out. All except for the staples in her neck, which will come out either tomorrow or Saturday. She is one number away from her home vent settings. She is still on some o2, but has she recovers, and gets used to her vent settings being weened down, I think she will come off the oxygen. The Dr. on this week said she may still go home over the weekend, but maybe Monday. So who knows. All I know is that she is almost home bound and that is all that matters to me. She is doing great. CV surgery calls her a "Rock Star" I think she is just one really tough, awesome kid!! I am so thankful for her speedy recovery. It is hard to imagine just how sick she was last year. Now I look at her, and she is so strong and determined. That's my girl!! I am so proud of her and I am proud to be her mommy!! Thanks again for all of your continued prayers. I am praying that once she gets home, she is will start to develop and catch up with other kids her age. I think we have a really long recovery road ahead of us in that regards, but I know she is a miracle baby and if there is a will, there is way. The Lord has been by our side every single step of the way, and he will continue to guide us through this new season of our lives. I feel like we have moved passed the critical, very fragile days and have entered into the rehab days. Yes she is still fragile, but not anywhere close to like she was. I am ready to see just what Isabella can do!! I dreamt the other night, that she just started talking. I am ready to hear her sweet little voice. With her trach, we don't even know what it sounds like when she cries. Her mouth opens, but no sound escapes. Then ever so often, a little sound will escape, and it is the most beautiful sound I have ever heard.
I would also like to add some tid bits about Ava. She continues to do well. She is getting her chest closed today. Please continue to pray for her recovery so that Nate and Amy can take her home soon. Hopefully she will get extubated in a few days so they can finally hold her again. Trust me, it is so painful to sit and watch your child and not be able to pick her up and snuggle her and comfort her. So please continue to pray.

One year ago today

Look at all of those staples. OUCH!! She also has some in her Neck
This is something new after surgery, she just keeps sticking her tongue out. I am not really sure why????? However, it is a really cute picture.


One year ago today, Isabella had her very first open heart surgery. Wow, it seems like a century ago. She, praise the Lord, is not having the problems with her open heart surgery recovery this time like she did last time. So anyways, the plan is for her to get her staples and her drain tubes out tomorrow. The Dr. on this week, said he had originally planned on her going home this week, but he does not like sending them out on Fridays. This is especially true for us since we live three hours away. He said it is still possible, but he would probably keep her until Monday. However, he said if the PICU gets busy then he wouldn't have a problem with sending her home on Friday. I think he just wants to be safe. That is fine with me. I just want to go home and then when I get there, I don't want to have to come back!!


She is getting better everyday. She is 2 numbers away from her home pressure support number on her vent. By tomorrow evening, she should be back on her home settings. She is still on just a tad of oxygen but is getting weened down. She has been smiling and has even gave a few kisses today.

Bella.....AKA One Awesome Baby

Isabella continues to do very well. They took the bandage off her chest today. She has soooo many staples in her chest. She also has staples in her neck from bypass. They have lowered some of her vent settings today. They will possibly take out her chest tubes tomorrow or the next day. They will look at her staples on Thursday and see if they are ready to come out. She is not taking much pain meds. She has not had any morphine in two days and no versed in three days. So she is tolerating her pain and recovering. Today she was actually reaching out and touching things with her hands. When her nurse was listening to her, she reached out and touched the nurses hand. Then, as I was holding her and reading, she saw my bookmark dangling and she reached out and grabbed it. I was thrilled to see her use her arms and hands!! We also saw a comparison of her chest x-ray preop and then post op. WOW!!! She has lots more room to breath. It was quite impressive. I guess it is not likely for this to happen again!!

So Matt and I are just spending about 95% of our time in Bella's room. I am missing Abby and Maddy so bad that I think I might go crazy. I cried last night for the first time in a few days from just missing them so much. Abby lost her first tooth, and she wants to give me her tooth fairy money to help out daddy and I since we are in KC!! HOW SWEET. I told her we are fine and she can spend her money how ever she wants. She said she really wants me to have it. Now how can that not just break my heart. We then ate dinner with some really great people last night. They were from a local church and had brought in a meal for the people at Ronald McDonald. So of course I told them all about our story and Bella. They then prayed with us and we shared our stories of faith and hope. It was amazing for both Matt and I.

For those of you from Oswego, you already know about Katherine. So for those of you who do not know. There is a little girl named Katherine from our home town, she is 5. She was shot in the head Saturday afternoon by a stray bullet while visiting their soon to be home here in the KC area over the weekend. They don't know who shot her. I can't even imagine the devastation this family is going through. My little Abby is that age!!! My heart is breaking for this family. She is in critical condition, she I hear is moving some on one side and that is about all I know. I guess the bullet is lodged and is unable to be removed. So please pray for Katherine.

A Special Friend

Last night, Isabella got to meet Kaden Boeckman (Ava's big brother). Kaden is also on the vent. It was so sweet seeing them together. Kaden then put his hands together and bowed his head as he said a special prayer for Isabella. It was the sweetest thing ever.
Sleeping Beauty!!
Isabella continues to recover at a remarkable rate. She amazes me with each passing day. Miracle after Miracle she continues to exceed all expectation. We do not have a go home date yet. Dr. Lofland did come in today and said she is back at her base line. He said we just need to get the chest tubes out and get her dressing off. She has a chest x-ray everyday, and today her x-ray looked much better. They took her off the positive pressure treatments. She is still on IV lasix, but I think they are about done with that. She has only had pain meds a couple of times today. So her pain level is much better. She is just playing with her kick-n-play and having fun looking at her balloons. Oh and of course enjoying being held by mommy!! She is doing great on her home vent. They have not lowered her settings yet, but they also said they may send her home on higher settings and let her home vent Dr. lower them back down. So I have no idea if we may go home later this week or if we will go home the first of next week. I am sure all of you know what I would like the answer to be, but I don't want to go home until Isabella is ready.
Please continue to pray for Ava. She has not gotten her chest closed yet but she is still fighting and showing strength beyond belief. She was awake today when we stopped by. Amy and Nate are amazing people and their little boy Kaden as been a true inspiration for us. So if you have not yet, please stop by their blog. http://kadenboeckman.blogspot.com

Speaking of amazing people, I want to tell you all about our friends Micah and Jason Acker. I am sure most of you as seen their blog or follow their blog. They are going through rough times again. First Gabi and now Jason and his job. However, no matter what life keeps throwing at them, they continue to reach out and give selflessly to others in need. I don't even know if they realize how much they minister to other families. They amaze me beyond words. I thank God everyday for bringing people like Micah and Jason into our lives. They have foundation in honor of Gabi's memory called Gift's of Gabi's Grace. It is a wonderful organization that help families with long term hospital stays. They are working on building this into something huge. I think God has great plans for their foundation and for their lives. So if you could spare a few dollars, please click on the side bar link for Gift's of Gabi's Grace. They have a page for donations. They accept paypal and credit card also!!! For every $10.00 they send Gift's of Gabi's Grace silicone bracelets.

So again thank you for all of your prayers. We appreciate all of the support from everyone.

Moving Right Along

We are three days post op, and she is already back on her home vent. Her vent settings are just a tad higher than normal, because she has some junk still down in her lungs that she needs to cough out. They are doing a positive pressure breathing treatment to help with that. They will take her chest dressing off tomorrow and then take her staples out sometime this week. Her chest tubes have stopped draining blood, and are now draining the straw colored fluid. Yesterday after I put her down from holding her for three hours, she was mad. She was only happy if I was touching her and talking to her. They finally had to give her some Morphine and Versed. I hate leaving her for even two seconds now. She knows when I leave the room, and the nurses said she gets mad. Abby and Maddy went home this morning. I miss them already, but they were getting restless. I think they miss their toys and their own beds.
I plan to have lots and lots of cuddle time with Bella today. I can't wait until she is all healed up so I can hold her close. Right now I am scared to even hardly touch her because I know it has to hurt.
RT is doing the positive pressure treatment right now, and they are getting tons of stuff up out of her lungs. She is tolerating her feeds really well. She is peeing good on her own. So like I said, we are moving right along. I don't know when she will come home, but it will be soon. Probably around one week.
Thanks again for all of your prayers.

Thursday, right out of the OR. She looks great.
Snuggle time this afternoon. Look at that hair. I think we need to do something about that!!! We snuggled for three hours. It was fabulous!!

Isabella continues to do really well. She has moments of pain that send her into fits. Otherwise, she is doing great. She is off all IV drips. She is almost ready to switch from the hospital vent back to her vent. She is back to getting feedings. She is crying now so I must go tend to her. Enjoy the pics. I will post more later. The prayers are working, she is recovering very quickly!!

Day One Post Op

Isabella is doing super!! She is off all drips except for the Nipride and Nitro. And after she wakes up, they will take her off those. The Dr. just wants to make sure her blood pressure will stay up when she wakes up. She usually has a little trouble coming off Milrinone, but not this time!! Also they said she would be back on her vent over the next day or so. They just need to get more fluid off her lungs. So things are moving right along. She has been opening her eyes this morning and looking around. She is smacking her lips like she is just starving to death. She looks awesome. I am so thrilled with her progress thus far. She is such an amazing girl with such a fight in her. I am soooooo proud to call her my daughter. She is a true testament of the Lords never ending grace. She is a Miracle.
Another Miracle, is little Ava down the hall. She is fighting with all her might and doing really well. She keeps getting better everyday. So thank you for all of your prayers. They are working for both Ava and Bella. I will post some pictures later this afternoon.

That's My Girl

Isabella is doing great. They did close her chest already. She does not have much swelling. Her chest tubes are already starting to decrease in drainage. She did not come back on NitricOxide or Epi. She is on minimal drips of Dopamine, Milrinone, Versed and Fentanyl. They will probably take her off the Nipride and Nitro tonight. They will probably start to wake her up tomorrow. She is waking up now, but they want her to rest tonight, so they have been giving her as needed Morphine. So in simplar terms, she is doing awesome. She is recovering well. She is sucking on an imaginary pacifier right now. She did come out of surgery with a fat lip. Not real sure where it came from. Her color looks great and she seems to be moving right along. I have taken pictures of her, but I won't put any on until tomorrow because I left my camera in my bag in the van. Also, Dr. Lofland said that her pulmonary vessels look big and great. He said they have really grown. Remember, this is what needed to happen in order for Isabella to get better. That is why they put her on Viagra. So that is another MIRACLE!!! Again thanks for all of your prayers today. The response on her blog was awesome. We are so blessed to have had so many and to have so many people who keep us in their prayers. Please continue to pray as Isabella recovers. I will keep everyone posted.
Love to All

She is off Bypass

She off bypass and is getting her chest tubes in right now!! Praise God!! What more can I say except Thank You Jesus!!!! I guess Dr. Lofland thinks he is going to go ahead and close up her chest. She should be going back up to the PICU in around one hour. I can not express my releif right now. I feel as if a huge weight was just lifted off me. So thank you again. I will post again later!!

New Update

The old conduit is out and the new one is going in. Everything is going beautifully. The aneurysm was removed safely. We are excited about all of the news thus far. Probably another hour before we come off bypass.
I have been posting frequently, so don't forget to scroll down in case you missed some!!!

Again THANK YOU!! THANK YOU!! YOUR PRAYERS MEAN SO MUCH TO US. WE KNOW ISABELLA IS A FIGHTER AND SHE IS A MIRACLE IN EVERYWAY. I CAN'T WAIT TO SEE MY BABY GIRL!!

Wow, another post already!!

They are in and he is working on getting the aneurysm out. Everything looks good. The ARNP said she is doing great and (knock on wood) she said she did not think she would have problem coming off bypass. She said she thinks it will take another couple of hours before she is out of surgery. The nerves are starting to settle just a little bit. I keep telling the ARNP that she needs to come in smiling everytime for an update so she doesn't freak me out!! Continue to pray.

Going on Bypass

Yesterday, Nurse Carrie let the girls get in the crib with sis
Sending Bella off to surgery this morning. My heart is breaking

They updated just a little bit ago that Dr. Lofland had made the incision in her neck to start bypass. I would guess she is on bypass now and they have started. As soon as they get in they will let us know. ENT scoped her airway earlier and took off the little tags around her stoma. All is well. Please continue to pray. We are nervous but confident. Child life came and got Abby and Maddy to take them upstairs to play.

Asleep with no problems

They just called and said Isabella went to sleep with no problems. They are doing a bronchioscope first and then the open heart. We should have another update in 45 minutes. Please pray!!

Bella is in surgery

At 8:40 a.m. Matt and I sent our little Bella Boo into the unknown. I thought I would be able to handle this time a little better, but I was a complete wreck. I love her so much and I want her to come through with flying colors. It is so scary to send her off to surgery. I stayed with her all night and cuddled with her. I will try to keep everyone posted as the day progresses.

Pretty in Pink Butterflies and Rainbows

Bella got a new butterfly shirt yesterday and then today childlife brought her this new butterfly rainbow blanket that matched just perfect. She just looks so cute today with all of her pink. So of course I had to take a bunch of pics. I couldn't pick just one so here are my favorite three. ENJOY!!



REALLY, REALLY GOOD NEWS!!!

First off, Ava came off ECMO this morning and she is doing really well. They would like to see her o2 sats a little higher. They have moved her from the NICU to the PICU. Please continue to pray for her recovery.


As for little miss Bella, she is still doing great. No more fever and nothing is growing out in her adneovirus culture. Dr. Lofland stopped by and said we are on for tomorrow morning as of now. She will have surgery like around 8:15. I will have a more definate time for you later.

Some Pics For Your Viewing Pleasure!!

We are in isolation

I guess Isabella spiked a temp last night. They gave her some tylenol. It went down quick and then never came back. It was just like on Monday. She had it and then it was gone. So they did a virus culture on her today. So until the cultures come back, we are in isolation. They will let it grow out for seven days, so that means seven days in isolation. The cardiac nurse said that CHF kids often just have intermitent temp spikes. So this could be very possible that this is what it is. CV surgery said she is still penciled in for Thursday. If anything grows between now and Thursday morning, she will not have surgery. If she spikes one more temp, she will not have surgery!!! I am just frustrated. I am someone who likes to have everything planned out. I am a list maker and a double checker. So when everything is so up in the air for so long, it makes me crazy. I know there is nothing I can do about it. So it will be just like Monday. We will be guessing up until the point they come and get for surgery. It all depends on Isabella right now. Please continue to pray for Isabella. She really needs to have this surgery. And please pray for my sanity. I have alot of patience, but I am tired and not feeling very patient today.

Surgery has been put off for a few days

At 6:15 this morning, Dr. Lofland came in and told us the bad news. Surgery would not take place today. He does not feel like it is safe to take her to the OR with a possible infection brewing. He said a few days. So I just talked to cardiac surgery nurses and they said she is tentatively on the schedule for Thursday, but it could be Wednesday. She did say that it will be this week. I am a little dissappointed. We had all mentally prepared ourselves for today and it was a big let down. However, I completely trust and respect Dr. Loflands decison. I am sure he thought this desicion thru over and over. I know if he says to wait, then it is for the best. And maybe she does have an infection. So if she did, then she could end up coming out of surgery septic and then not recovering. So this is what we prayed about. We prayed God would give the Dr.'s the knowledge to care for Isabella. Well I have to say that the prayer has been answered. I beleive God knew she was not ready for surgery today. So yes I am a little sad about the decision, but I understand. So our families will go home today and then come back for Thursdays surgery. I will continue to keep everyone posted. As soon as I know when I will let everyone know. I think the hardest part is not knowing. And there is a big chance we will not every really know if she is having surgery until they are physically taking her to the OR. That is when I will be like okay it is really happening!!!

Getting nervous

All of our family made it in today. We had our very special chaplain Janie come in this evening for a very special prayer. All of our family gathered around bedside and first my dad said prayer and then Janie. It was nice and comforting. I am going to stay the night in the PICU with Bella. I plan to have cuddle time and to give her lots of kisses and loving. I don't think anything will hold us back from going to the OR tomorrow. All of her labs look great. She was a little low on some electrolytes from the amount of lasix she gets. I think that may be a possible reason for the temp last night. So far so good, no more temps!!! She has started smiling again this evening. My mom brought her cow bell. With one ring of the bell, she was grinning from ear to ear. She looks and acts better now than she has in days. I will be taking my lap top to the surgery waiting with us tomorrow. I will try to keep everyone as posted as possible. I know everyone will be checking like crazy. We will be in surgery waiting on the first floor just past the gift shop if anyone wants to come by. Again I can't thank everyone enough for all of the prayers. They will be by to get her at 7:00 a.m. Ohhh my heart is breaking!!!! I just want to by pass tomorrow.

Still on for tomorrow morning

Once we cooled the room off, and did a little dose of tylenol, Isabella's fever broke and she has not had one since. They started a new antibotic for just in case purposes. This way if she does have a bug, she is covered for going to the OR. So unless she spikes a temp or something else grows out that we did not already know about and that is not being covered by antibotics, we are going to the OR in the a.m. They will be by to get her at 7:00 a.m. Matt and I will get to walk down with her and then it will be good-bye for now. Last time I collapsed when I let her go. I hope tomorrow I have more strength. I am nervous and anxious. I want her to feel better, but it just stinks that she has to have open heart. If for some reason they do not do the surgery tomorrow, we will not know until right before time. I will try to keep everyone updated as we get updated tomorrow. This will be a very hard day for Matt and I. It is emotional and scary. So please not only pray for her successful surgery and quick recovery but if you could say a prayer for our strength. I think we will need it tomorrow. I feel good about this surgery. The girls made it in with my parents and sister. I was so glad to get to see them. I miss my babies so much!! They are at the house now playing with Daddy. Nana and I are sitting watch in Bella's room. When he gets back to the hospital, I will have to have him upload more pics from my camera. I will try to post some later.
Love to All
Megan

We have a fever

Isabella spiked a temp today. So they cultured everything. She does not seem to be sick. But this new turn of events could very well post pone surgery. I am praying and praying that it does not. If Dr. Lofland thinks it needs to be done Monday regardless, he will do it. However, if he thinks he can wait, then he will wait. We have not heard anything official, we are just speculating what could happen. I think if she does not spike anymore temps and nothing grows out in the first 24 hours, then they may go ahead and proceed. I don't want this to be put off any longer. She is so uncomfortable with her breathing. However, I am not the Dr. so I don't know what is best. I do know that I think she is running a fever from a stress response from the big bulge in her chest pushing down on everything. She is notorious for running temps when things are not just right. Also it is like 100 degrees in this room. If we try to change the thermostat, then it gets too cold. So we are either way to cold or way to hot. So hopefully this will be why she is running a temp. Another thought is that it could be an UTI. She had 14 loose stools yesterday from being on antibiotics. So with all of that poop it could very well cause an infection in her urinary tract. When they got her UA though it looked clear. It didn't seem to look like infected pee, but you can never really tell. They also did blood cultures. I don't think anything will turn up there. she does not have a PICC line or a Central line at this time, but she did go to the Cath Lab, however, I don't think she would have gotten anything in there that would cause an infection. And lastly, she had a trach culture done. Well, she is already on antibiotics for that, and her trach secretions are no longer green, they are back to white. So unless there is a bug just hiding somewhere I don't know about, then I think this is more temp control of the room and stress on her body. Anyways what I am really getting at, is just pray. Of course God has reason for everything. We just seem to keep hitting road blocks on when surgery will take place. So like I said, we are still on target for Monday morning, I am just scared they will change their minds.

Also, the surgeon came by this morning to go over things with us. He said that he is going to put her on bypass before he opens her chest. This will be the safest way just in case the aneurysm bursts. I am getting nervous about surgery, but I am not scared. I feel God's presense right here in this PICU room and I know that no matter what, he has a plan and Isabella will be okay. Ultimately, he actually loves her more than I could even think about. Which as humans, we can't even begin to understand that kind of love. So I know that God has a plan for Isabella. I just hope and pray his plan is what I would like to see happen.
In Matthew Chapter 10 29-31 it talks about how not even one sparrow will fall without his fathers consent or notice. It is says and we are more important than the sparrows, so think about that love for us. Also it states that every number on our head is numbered. So God is in control and it is his will that will be done. That is something that has been hard for me to accept. Mostly because I know that I am not in control. I am at peace with that now. Who better to be in control than our father. Because no matter where he takes us, he will always be beside us. So enough for today. I am not going to worry about tomorrow or the next day or the next. I know Isabella will eventually have her surgery and it will all be okay. Thank you to the overwhelming amount of people who are keeping us in their prayers.

Finally some pics!!!!!!

Isabella in her baptism gown
Loving on her vent tubing. She does best laying on her side. It takes the pressure off where that aneurysm is pushing down
Snoozing away

Getting baptized
Our awesome social worker Melissa stands in as the Catholic Rep for Isabella's baptism
Proud Parents and Father Morgan
Tracy, one of our favorite Chaplains poses with Bella

You can tell she just doesn't feel well
Too cute!!
Little Angel

It has been confirmed, we are having surgery on Monday at 7:30 a.m. Please remember Isabella in your prayers that day. I will keep everyone up to date with any new changes

And again Thank you, thank you for all of your prayers

Please remember Ava Boeckman in your prayers. They were unable to get her off ecmo today, so they are shooting for trying again on Monday. So Monday is the big day for both families.

Surgery Monday

So we are not currently in the OR!! We are going in on Monday. As far as what time, I don't know. And I am not sure if Monday is a complete for sure. Right now the PICU is FULL. I mean no beds are open. So I guess when this happens, they have to put off some open hearts because of lack of space. Well in Isabella's case, she is already taking up bed, so she should get done. Plus, HELLO, this needs taken care of ASAP. I think cardiology would have liked it done today, but her surgeon thought it was best to wait until Monday. I trust our surgeon very much. He is one of the very best in the entire country. So I feel confident that if he says it is best to wait then it is best to wait. So as long as she is sleeping, she does really well. It is when she is awake that she starts coughing and coughing like crazy.
Abby and Madison are coming up on Sunday. I can't wait. I miss them soooooo much. It hurts so bad to be away from them.
Again thank you for your continued prayers.

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

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.