Family Tree Night

As promised, here are the Christmas Tree Pics. Bella is looking up at the lights here. She is laying under the tree. She just looked so amazed at it all!!

Madison and Bella.

Abby steals a smooch from Bella under the Christmas Tree

This is my favorite. I can't get over the look of awe in her face. She way you can just see her "seeing" Does that make sense???

Madison puts the star on

Abby sneaking around the tree

Okay now its Abby's turn to put the star on.

It was a great family night. We listened to Christmas music. After the tree was done, we wrapped a few gifts. Abby and Madison wrapped a bunch of their own toys and put them under the tree in hopes of giving them to their friends. It is really sweet to see them want to be so giving. In fact the other day Abby said to me "You know Mommy, it is really nice what you are doing for those kids in the hospital" For a five year old to notice the bigger picture of it all says something. She just hit it head on what giving is all about. I think that is why she decided to wrap up a bunch of her toys. It is good my kids do nice things like that once in awhile to remind me that they are not little monsters after all.

So enjoy the pics!!!

Lots of Love

Happy 11 month Birthday Bella Boo

Bella's first Thanksgiving. I tried to get her to hold this little pumpkin. She just looks so cute and big here. Check out how long her hair has gotten.

This is really just WAY TOO CUTE!!!!

This is her snoozing this morning. She just looked so cute cuddling her vent tubing. And again check out her hair. We can't get to it stay down!!

Well Bella is 11 months old today. I have to say that in the last week, she has improved leaps and bounds. She now has a tooth. It is official. We did the spoon test and yes we heard it ting. She is starting to put her hands in her mouth. This is really awesome because she has for the last two months stopped taking her pacifier, she obviously has not been eating by mouth and she has has had no interest in putting anything in her mouth.

She is also sitting up better and better everyday. She needs little support and her head control is great.

She is smiling more and more everyday!! Yeah we love smiles!!

She has been making more cooing noises around the trach. She also has been mimicking our facial expressions.

And last but not least, she has gained a pound in the last two weeks!! What Progress!!

Thanksgiving was great. My mom and I cooked most of the day. We made WAY too much food and I ate WAY too much food. It was a blessing to get to spend the holiday at home with my family.

We put the tree up tonight. I will put pics of that on tomorrow. Bella laid under tree for a really long time this evening and just smiled and kicked. She loved the lights and the dangling ornaments. Don't worry I have lots of pics I just need to upload them off my camera. Well, I am going to bed. Matt is doing the night shift tonight!!!

Update on Santa's little helpers

Well Micah has been shopping in Indiana and I have been shopping here. I have to say I think she got the better end of the shopping deal!! We have bought all of the stockings and lots of board books and puzzle books thus far. Micah has purchased quite a bit also. She is also working on lots of crafts. So things are moving right along for a December 8th delivery. We are so excited about this. I can't wait to do this for all of those kids. I know it could be us there in the PICU over the holidays and I am thankful it is not us. I want to explain why we formed Miracles Happen Ministries. So many times they told us they did not know if Isabella was going to live or at that be able to function at all. Well through the entire year, Matt and I have stayed positive and for the most part we have kept peace about what Isabella's future would hold. When I was pregnant with Bella, we did not know that she had a heart defect. But mothers instinct, I knew deep down that something was wrong with my baby. When she was born she was so tiny and fragile looking. She scared me!! I fell asleep one night with her on my chest when she was about 1 week old and she got her head turned down to were her mouth and nose were face down on my chest. In my sleep I remember someone whispering my name. I opened my eyes and realized Isabella was face down. Thank God for who ever or whatever woke me up. She could have suffocated!! Then at three weeks of age she was diagnosed with Truncus Arteriosus. Then as you all know she had heart surgery in February and then Matt and I both thought that would be it for awhile. Well obviously it was not. She flew out 4 times and stayed in the PICU for over 150 days. There were times that my peace was rocked and I mean big time. I lost faith a time or two. But not ever for very long. I guess just like I knew when I was pregnant that something was wrong, I know now that she is going to be okay. I knew God was going to work this out for his Glory. And yes I still know he could and still can take her from me at any time. But I want to minister through her and tell her story and reach out to others. I am trying to find my way right now and it is very hard. I pray everyday for God to give me the strength to do this foundation and keep a positive word for others. I feel so stongly about this ministry that I can't explain. If I have to find good in Isabella's sickness and what she has been through, this is it. She has made a difference in lives and I am her advocate. I will minister for her and keep her story going as long as I feel led. We will try to reach out and help as many families as we can in the process. Okay I was not really planning on sharing all of that, but I am having one of those days. So I just want the wonderful people who have been with us to know. You all know who you are. You have provided love, prayers, contributions, time and talent. You all are just as much a part of this ministry as anyone else. I could not do it without the love and support of all of you. I have let many times several people steal my joy about this because they do not feel as strongly about it as I do. My mom says that is what happens whey you do a ministry. Feelings may get hurt and it is not easy. I just care so much about Isabella and this ministry, but I know I must accept that not everyone wants to be a part of this. And you know what I think that is okay with me. I can't let anything get me down. I am a girl on a mission!! As my sister would say "On a mission from God" (Yeah she is nuts but I love her)
And I love all of you. May God Bless you all. And in case I don't get to say it before Thursday, have a happy Thanksgiving!!

1st Annual Santa's Little Helpers

So Micah and I have decided on a project for the PICU this Christmas. We are going to be putting together stockings full of lots of goodies for the children in the PICU at Children's Mercy. We are doing ornaments with our foundation names on them. Hopefully we will be able to get an idea of the ages of the kids so we can do gender and age specific gifts. It is going to be a little hard but Micah and I really want this to be a very special event and we don't want it to be just a bunch of "junk" in the stocking. We will be delivering on December 8th.
The t-shirt sales are going okay and I thank everyone who has ordered. If you would like a shirt please order soon because I will have to put the order into the printers by the end of next week. People have been asking questions about sizes. I believe we can get just about any size, and they are 50/50. All proceeds are going directly to the foundation and most of it will be to help with our Christmas project. Matt and I know how awful it is to sit in the PICU but to be there at Christmas must be horrible. We want to make this a special Christmas for the kids. I have seen it over and over again kids that are in the PICU that have no one. No mommy or daddy to love on them when they need it the most. It is heart breaking and awful but it does happen. Also being there is a huge financial hardship. So hopefully we will help make a little bit happier for these kids and their families.
This is something that Micah and I along with our families want to do to celebrate the life of Gabi and the miracle of Bella. I have said it a million times and I will say it again, these little girls have touched and impacted so many lives. We want to continue celebrating for them.
Love to All and I will keep everyone posted with what we are planning.
For the beautiful story of Gabi please visit http://gabrielesheridan.blogspot.com/

Party Planning

Okay I have started planning Isabella's first birthday party. Since the Dr.'s could not assure us that she would make it this far, and she has!! Praise God!! We are going to celebrate. Well mostly celebrate on the blog. She will be one on December 23rd and I am going to have a small b-day party for her on the weekend before. I have bought her the ultimate princess dress. Well when I ordered it, I ordered a 6 mo dress and then I stated thinking, this is not going to fit. So I found another dress I liked even better and ordered a bigger size. So today the dresses came in!! YEAH. It felt like Christmas. So Christina (our day nurse) and I played dress us with Bella. We did try both dresses on her and they both looked very cute. The one in the pictures is the one that is too small. It actually is not zipped up because it was so small. But since I bought it, I had to get some picture of her in it. The one she will wear on her birthday will not be revealed until that time!! Since the party is going to be small (do to it being RSV season and what not) I am planning on capturing every single moment and putting it on the blog. As for the dress, all I can say is that it is 7 layers!! You all may think I am nuts but I really want to give her the best first birthday ever!! So here are the photos of her in the non birthday dress. I thought everyone would enjoy them.
As for Bella and not feeling well lately: She is doing much better. She did spike a temp today but it quickly went back down. I think she just had a virus that needed to run its course. So we are praying that we are at the tail end of it. We have lost a little progress with her since she has not been feeling well, but today we put her in her bumbo chair and made her hold her head up. She did okay but I know she will regain her strength and start moving right along. Thank you to all for your prayers.
T-shirt sales: We are moving right along with the fundraiser so thank you to all of you who have ordered. We hope to make a difference for the kids at CMH in the PICU. We are teaming up with Gifts of Gabi's Grace. So stay tuned for more details on that. Micah and I are working out a plan.



Absolutely beautiful. She is a true princess!!

One of Maddy playing in the leaves today. She is just too darn cute also. Sorry but Abby was at school when I was being camera happy today.






Love to all of you. Your thoughts and prayers have made all of the difference in the world.

We are selling T-shirts

Okay here is the T-shirt design. We are selling right now. We will be taking order until November 21st. They are going to be $10.00 each for adults and $8.00 each for kids. The proceeds go to the ministry to help other critically ill children. We are hoping to be able to do something for Christmas for some of the kids in the PICU at Children's Mercy. So if you want a shirt please place your order soon. We will deliver most people their shirts but for those of you who live far away, we can ship them, just add $2.00 to your order for shipping. If you would like to pay by paypal, please go to the sidebar and there is a button there that says donation. For those you who are wanting to do check or money order, just send to P.O. Box 94 Oswego, KS 67356. Or if you want to order in person. Whatever works best!! We hope to have a more male like t-shirt designed soon. I know this one is kind of girly. So you men keep watching for that!! Matt has already said he doesn't think he will wear this one!! Oh and please specify if the shirt is child or adult and what size you would like. And the shirt is going to be white. Also they will be ready around the last week of November. Okay if anyone has any additional questions about the shirts, just e-mail me at megangudde@hotmail.com

Okay on another note, please pray for Bella. She has a bit of a virus right now and doesn't feel so great. She is running a little temp and has diarrhea. She just acts like she feels really crummy. So please pray for her recovery from this little virus.

Love to all!!

p.s. to view a larger image of the design just click on the picture and it allow you to see it in a much bigger view!!

Good Report

Well it was a pretty good day in KC. We left early so we could see a couple of people before our appointment. We got to see Janie our chaplain and then we got to see Becky!!! Poor Becky she held Bella for close to an hour and Bella was out cold the entire time. So Becky I am really sorry you didn't get to see her smile but I bet it was nice to get to hold her again. For those of you who don't know, Becky was one of our primary nurses.
We then went to her appointment. That's when it got crazy. There were a bunch of people there to see us, well to see Bella!! Melissa our awesome social worker and Dorothy our equally awesome FHP person were there. We were so excited to see both of them. They have done so much for us and I don't think they will ever know how much we appreciate them!!
Okay so on with the appt. They are not really big concerned with her throwing up. She seems to be holding her own with that so no changes there. She has grown some and gained some weight. She continues to move up on the growth curve. She is still not on the growth curve for height but she is for weight. So she is just short and chunky!!! Just kidding baby doll. I also asked about her sleeping so much. It is a concern of mine because I feel she sleeps way too much for 10 1/2 months. Dr. Gratny said she is sleeping so much because of the brain injury. She said the only time the brain can heal is when you are sleeping. So I guess the sleeping is a good thing. She needs to sleep to get better. She explained to us that Bella basically started all over when she suffered this last crash. So even though Bella is 10 1/2 months old, she is kind of like a 3 month old. She is doing everything a three month old would do. Matt and I had talked about this before. We both kind of felt like that she had to start back over at square one. She just needs time to catch up. They did say in clinic that no one knows just how much of her functioning she will get back. I would like to argue that point because I BELIEVE she will get back all of her functioning and then progress along like any other baby. It is just going to take time, determination, strength, faith and prayer!!! And whatever level she ends up at, I know she will be the best that she can be.
So, all in all, everyone was impressed with how she was looking. She had so many comments on how long her hair has gotten. Everyone thought she looked great. Dr. Gratny is very pleased with the way she is progressing. She decreased some of her vent settings but did not release her yet to be off the vent for a few hours a day. She said she would probably be ready next month for that step. So we are not scheduled to go back for another month. We will see PT, OT and cardiology next month. We will then see ENT in January and they will eval her to see if maybe she can start eating by mouth again. I think they may scope her in January. So we will see.
Sorry I didn't get anything posted until now. We did go to our friends Amber and Mike after our appt for a quick visit. We just got home and settled in for the night.
Love to All
Oh and you know I would have put tons of pics on here from today, but I went off and left my camera this morning. SORRY!!

Tomorrow we are off to KC

Tomorrow we will be leaving for KC for our appointment at 2:30. I don't see any reason why we will not have a good check up. Isabella continues to do very well. She is still spitting up some but we gave changed now to progestamil which is already broken down formula. I hope it helps. She weighs 17 lbs 13oz. She is outgrowing everything. We can't wait to see everyone in KC tomorrow. Some nurses and a few others are going to meet up with us and then we are having dinner with some friends. We are very excited. It is like we moved away from our family and we never get to see them anymore. I know it sounds crazy, but when those people are the ones with you through the most awful moments of your life, they become like family. That is how we feel about many of our nurses and the social worker and our chaplain and our many friends we have made. So it will be late tomorrow evening when we return home so stay tuned. I promise I will post tomorrow night to let everyone know what wonderful reports she received. Love to all!!

To the ICU Docs I would like to say "I told you so!!!"

They told us not to be surprised if Isabella could never see or hear again. Well we all know she has been able to hear for quite some time. Well, the audiologist came today and confirmed our knowing. She said that there was no reason why Isabella would not be able to hear. She said her structure is normal and sound does bounce off of her tympanic membrane (all good things!!) So we know she is getting her sight back and she can hear!! Also they were concerned with her movements at CMH they said the were not purposeful. Well the other night she reached up and tried to take my sisters glasses off of her face. She has been reaching out to my face and rubbing it just like she used to. She also has a very special daisy that is at the head of her crib that was from Gabi. Well the other night, she was laying in her crib and she reared her head back and reached out and grabbed that daisy!! She has a kick-n-play that she loves. She will kick it and it will play a song. While it plays the song she stops kicking then as soon as the song is over, she kicks it again to hear a new song. These are all very purposeful movements. Don't get the wrong, the ICU Docs are awesome and they saved her life. I know they were telling us the worst case scenario, but I am here to tell you, that Bella is beating the odds. And I told them that they unfortunately were not privileged to the information as to whether or not Bella was going to get better. I said sorry it is between Bella and God. And even though I had my days of despair and worry, I never once doubted God's plan. I know he has great things in store for Bella. She has overcome and she is doing great. Oh and she is cooing like crazy now. I just wish I could hear her but she is getting stronger and is making more and more noises around her trach.

More Halloween pics of Bella just because she is sooo darn cute!!

Love to All

Trick or Treat!!!

What a group. D.J., Marley, Maddy, Sione, Sarah, Abby and Katie. Not pictured in the group is Isabella, Hayden and Jarikah. Yeah you try taking that many kids Trick-or-treating!!!! It took two cars and 8 Adults!!! Aunt Stephanie and Uncle Dan stayed home with Bella.

Bella as a punk rock princess stayed at home while we went trick or treating.

Abby as a fairy princess and Katie as a princess in the van ready to go. Katie is casting a magical spell!!

Abby poses with Bella. They are sooo sweet!!!

Sarah and D.J. along with Katie and Abby. D.J. had this gross bleeding mask but I think his real face is even scarier!! Just kidding D.J.

Aunt Brianna as an angel and Hayden as the devil.

My three beautiful princesses. Along with the help of a couple of my nurses and my mom, I made all three skirts and Bella's headband. It was so much fun making their Halloween costumes. I then spent a good hour on Abby's hair and make-up. It was all worth it. They were all three just absolutely precious!!!

So Bella's first Halloween was a success. She didn't get to go out but she still got to greet lots of people at home. This was the first holiday since Easter that we got to spend as a family all together. It was really nice!!! Madison took to trick-or-treating really quick. She just grabbed for the candy!! Abby was scared that people were going to try and steal her when she went to their doors. We also went up to mommy's old work and saw all of the workers and residents. I tell you I really miss working there. It was good to get to see everyone, but I wouldn't change it for the world to get to stay home and be with my babies. Yeah it makes me crazy every now and again but it is worth it!!!

Good Night and Happy Halloween to all!!