Town Festival

Today we headed out to the Town Festival. It was only a couple of blocks away, so we walked. We walked around the park and Abby and Madison enjoyed the petting zoo. It was nice to just walk around outside for awhile. Afterwards, we came home and Abby and Madison played make-up party. They got all dressed up and I even let them do my make-up!! I am now sporting BLUE eyeshadow. Bella has been so happy lately. She seems to get a little stronger all of the time. She can reposition herself now and during tummy time, she tries to pull her knees up. So it will just be a matter of time before she is sitting up and then crawling. Today at the festival someone came up to me and asked "Do you mind if I touch her? I just want to know what it feels like to touch a miracle." It brought tears to my eyes. She told me about how Bella has changed so many people lives and that Matt and I are so lucky that God chose us to have a baby like Bella. Bella is and will continue to change lives. She is one amazing baby.

Bella sporting her really cute sneakers. They were so cute I just had to take a picture of her little feet in them. I know I'm nuts!!

My three beautiful girls. They are so wonderful. I feel like the luckiest mommy. Madison now thinks that Isabella is her baby. She said she is Bella's mommy!!

Look, she is actually playing with that toy. This is a huge deal for her!!

We Actually left the house today!!

It was the first time since May that all of us had been in the van together, or even went anywhere together as a family. Matt, Abby, Madison, Bella, my mom and myself loaded up into the van. Then (one hour later!!) we were off to Wal-Mart. I know you are thinking what are those crazy people taking Bella to Wal-Mart for. Well let me tell you I was a little nervous about taking her out. I was scared of how she would react. But, she was so happy the entire time. She smiled all the way to Wal-Mart and the entire time in Wal-Mart. She was more alert in Wal-Mart than I have seen her in a really long time. Don't worry I didn't let anyone breathe on her or touch her. Actually people didn't even stare at her. We only saw three people we knew and said hello to. We just went through the drive-thru at McDonalds so we didn't have to get out twice.

I am really proud of us for taking her out. I think it is so important that she not have to live in a "bubble" She shouldn't have to. She has really never actually ever been "sick" Every time she has gone back to the hospital, it has been her heart.

I am just so glad to have gotten to go somewhere as a family. We are so thankful for days like today. They are very rare and very special. So even just a little trip to Wal-Mart has been the highlight of the last 5 months.

Praise God for the little things right!!

Love to all

Needed prayers for some wonderful families:

As always Micah and Jason Acker http://gabrielesheridan.blogspot.com/

The others are friends of Micah and Jason. We have started following their blogs also

A family with a daughter named Chelsea. She has DS and was just diagnosed with Leukemia. You can visit her at http://cbranam.blogspot.com/

Then another family that also has a little boy with a trach. She is now pregnant with a little girl and they just found out she has hypoplastic left sided heart syndrome along with other complications. You may visit their site at http://kadenboeckman.com/

2 weeks so far!! YEAH

Pictures of the week.

Abby and Madison spent Saturday afternoon decorating pumpkins for the pumpkin contest at the library. Here is their end results. Abby has a princess pumpkin and Madison has a Dora pumpkin.

Picture of the T-shirts worn at the Poker Run.

Sharon and Ray Shoop loving on Bella. I think she captured their hearts. We love you Ray and Sharon!! And Sharon I think I gained about 10 pounds eating your left over cake!! HA HA

Then there is the poster board that I spent all day making. They asked me to make a poster board of pictures for the Gospel Sing for Bella. I might have went a little overboard. It turned out so well, I am going to get a poster frame for it and put it up in my bedroom.

Well, Shelley I tried to get your picture on here, but for some reason it would not load. So just know that I did try.

Bella is still doing great. It has been two weeks today since we came home. It is SO good to be home!! We are loving just getting to be a family. I know I keep saying that, but you don't realize how much that means until you go through not getting to be together for weeks and months on end.

I think I am working harder now than I ever did when I worked. It is not an easy job being a stay at home mom, but I love it. Well, Matt had a good birthday. He is a little depressed about turning 29, but I think he will get over it!!

Keep the prayers going. I know they are working

As always, Lots of Love

Matt, Megan, Abby, Madison and Isabella.

9 months old

PICTURES OF BELLA OVER THE LAST MONTH. ISN'T SHE THE MOST BEAUTIFUL BABY??

Yesterday Isabella turned 9 months old and tomorrow, her daddy turns 29. Today Isabella weighed in at 16 lbs and she was 26 inches long. Thank you Ray and Sharon for all of the wonderful new outfits for Bella. I will have to take her picture of her in all of them and post them on the blog. And Ray I want you to know that Abby now refers to you as "uncle Ray" The girls just love you guys.

Well, Matt and I are excited about going to KC next Wednesday. Believe it or not we miss it. Not that we miss being in the hospital, just being in KC.

I know I just can't say it enough on how much we want to thank everyone for everything they have done for us. The out poor of love and support we have received is unreal. I feel blessed to have so many special people in our lives. The prayers are wonderful and I know they are working because Bella is getting better everyday. She has been home for almost two weeks!! That is amazing.

I would like to announce that on October 6th at 5:30 p.m. at the Oswego Community Center, so ladies that I worked with are putting together a Gospel sing. They are having a silent auction as well. It will all be for funds for Bella.

Right now so many people are helping us and Bella. Matt and I have been talking about hopefully being able to turn this around someday and help other people as we have been helped. We would like to eventually help other families with Congenital Heart Defects. We want to do this because if it wasn't for the out poor of love we would have never made it. We were both unable to really work over the last several months because of having to be in KC with Bella. I know there are so many other families that face issues like that also. Mom and I along with some other ladies have already started making little blankets for the CHD kids at Mercy for when they have surgery. I am hoping to be able to take the first load of blankets to CMH with us on October 3rd for Bella's appt.

If you could, please link to Gifts of Gabi's Grace under Bella's links. Micah and Jason are also doing so many wonderful things for people in memory and honor of Gabi. They have a foundation and are creating a new website for the foundation. What they are doing is amazing. They are a wonderful family and we pray for their strength everyday!!

We love you all

Matt, Megan, Bella, Abby and Madison

Poker Run

The poker run was a big success. Thanks to Billy and Leslie Gray for putting it all together. Thank you to all who came out. Matt and I got to escape long enough to come and see the end when they did the raffle. It was nice to get out for a little while. We went to dinner with some family and then came right back home. We were only gone for three hours and I called two times to check on Bella!! She is doing great. It was amazing to see all of the people today. I did not know over half of the people at the poker run, but they still came out and showed their support. That is truely amazing that one little girl can touch so many!! So thanks again to everyone.
Lots of Love
Matt, Megan, Bella, Abby and Madison

A very busy day

We started the day with a bath and a pedicure. Here is Bella's cute little toes!!

Here is Madison getting her toe nails done. Believe it or not, she was scared of the cotton ball. Weird!!

Aunt Paula stopped by with Bella's cousin Hayden. Hayden is such as chunk. We had a weigh in to see who was bigger between Bella and Hayden. Well it was a tie.

Hayden and Isabella. I know they are SOOOOO CUTE

"Hey Bella, what are these really cool toys you have attached to you?"

Uncle Tommy and Bella have special bonding time.

Video of Abby reading (well actually she just has the book memorized) Love you Forever. She wanted to read to her sisters tonight before bed. I thought it was so sweet that I had to capture the moment. I thought I would share it with the rest of you also.

This one I think is really funny. It is a video from this evening with my niece Jarikah, nephew D.J. and then Abby and Maddy. They are singing and dancing to the Naked Brothers Song "Banana Smoothie"

So as you can see Bella had a really busy day. Her aunt Stephanie was her nurse. She had lots of visitors today. Grandma Gudde, Aunt Paula, cousins Hayden, Marlee, Jarikah, D.J., Miranda and Taylor and then Uncle Dan. It was a little crazy around here for awhile.

Lots of Love

Megan, Matt, Abby, Madison and Bella

Bella sort of rolls over!!

Last night I was listening to Bella's heart and I thought, Wow I can't hear a murmur. So I listened again this evening. Well, the murmur is there, but it is SO faint that if you did not know you were listening for it, you would probably not know that it was there. I am not joking. I am curious to see what an echo would look like. Well, she is doing new tricks now. I put her slightly on her side yesterday and she went ahead and finished rolling over on her own!! Aunt Erin came over today to help me change her trach. I think it totally freaked Aunt Erin out. Afterwards, Isabella and Aunt Erin had snuggle time.

Enjoy the new pics!! So I have added the video of her rolling over.....sort of. I know it seems a little cruel and she gets really mad but I work with her everyday because I want her to realize that there is more to life then laying on her back. I want her to know that she can do it and that she needs to try. So please don't think the video is mean!! We have not gotten any PT or OT at the house yet, so I have been doing it on my own. We have been working with head and trunk control, having tummy time and also working on simple things like grabbing for toys.

Little Cookie Monsters

Today, I had the brilliant idea to decorate cookies with the kids! I don't know what I was thinking. I got up and started making sugar cookie dough at 9:00 a.m. Then I made icing in 6 different colors. Then I rolled out the cookies and made ghosts, pumpkins and cats. So finally at 1:00 p.m. I was ready to decorate cookies. Madison, Abby, my niece Sarah, my friend Heather and her son Gavyn enjoyed an afternoon of decorating and eating cookies. Madison went crazy with the sprinkles. She had them all over the place. I think they all thought that the more frosting they used the better. I sent them all out afterwards to the trampoline to jump it off. They were completely loaded with sugar!! Again, what was I thinking!!



















Had to add a picture of Bella!! She has had a good day. She slept until 6:30 this a.m. I think she is finally getting the hang of days and nights. Bella however did not get to eat any sugar cookies. She was instead taking a nap during that time.

The smell of rain

This is one of the most touching things I have read in awhile. It gave me chills and brought tears to my eyes. I wanted to share it with as many people as I could. It was sent to me by one of the nursing administrators from our home health nursing. ENJOY!!

THE SMELL OF RAIN
A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David , held her hand as they braced themselves for the latest news. That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature. Still, the doctor's soft words dropped like bombs. "I don't think she's going to make it," he said, as kindly as he could.

"There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one"

Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived.

She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on. "No! No!" was all Diana could say. She and David , with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl. There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there.

At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time.

And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted. Five years later, when Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story. One blistering afternoon in the summer of 1996 near her home in Irving , Texas , Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby, when she suddenly fell silent . Hugging her arms across her chest, little Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest." Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

No news is good news

Isabella has had a good day. Nothing to exciting. I went shopping with Madison today, so it was the first time I left her since we got home. I love our day nurse, she is great. I thought about eliminating night nursing so I could move Bella back into our room. Well, three nights with no nurse, I am completely exhausted. I think I do need a night nurse. I just feel like I should be able to take care of my children without help. Well, I can't!! So I guess as much as I hate to admit it, I do need the help on our nurses. We have some really good nurses though. Our night nurse also has a child on the vent, so she REALLY understands. Our day nurse is someone I have known forever. She is a great christian woman. Bella is gaining a little too much weight now!! HA HA. She is right at 16 lbs. I think that would be a little over a pound in one week. I had to go and buy her some size 12 month clothes today. She is growing so fast. I will probably need to ask her Dr. if we can cut back her calories.

Lots of love!!

Sweet Potatoes for my Sweet Potatoe

Isabella ate by mouth today!!! For most it would be no big deal, but Bella has not had anything by mouth for months. So I decided today she was going to sit in her Bumbo chair and try some baby food. She loved it. She ate ten really good bites. Then she started spitting everywhere so we stopped. I was so proud of her!! She slept in our room again last night and she slept all night. So she has been up all day with only two naps. She got to go on another walk today. I think she is getting bigger by the day. She seems to be getting stronger. She can hold her head up in her Bumbo chair now. She has been playing more a little each day. I woke up this morning with her next to me and when I looked over, she was just laying there kicking her legs and smiling. It was so sweet. I miss getting to be with Bella like that, her being in my bed and just getting to be together as a family. It is almost like having a new baby at home. She has not been home all summer and now that she finally is, it is new but exciting for everyone. I am enjoying every minute of being a stay at home mom. I love getting to be here for my kids. It is something I have never had the pleasure of doing. I think it is suiting me well.

`Gotta go finish the girls' showers. Until Tomorrow

Also, people keep coming to me and telling me they know lots of people who are following the blog. I am curious to know who all is following. So, if you could leave a comment that would be great. It is great to know that so many people are praying for Bella!!

Megan, Matt, Bella, Abby and Madison

Sarah and Abby on the tramoline today.

Here is a video of Abby holding Isabella. Madison is also sitting on the couch asleep and about to fall over. I thought it was kind of cute!!

Out for a stroll

It was such a beautiful day, I couldn't resist taking Bella out for a stroll. Her nurse today was none other than her aunt Stephanie. So, Bella along with Abby and Madison, my niece Jarikah, then Stephanie and myself all went for a walk today. She doesn't have her eyes open in the pictures, but I promise she was awake the whole time. We of course had a stop for photos!! Sarah F., did you notice the dress? Thought you would like it. It fits her so good already. Who would have guessed she would have been such a chunk. The scale they sent home with us, she barely fits on it. She is almost too big for her bumbo chair also. I am not joking, she is literally growing like a weed!! And Becky, I promise I will try harder to post everyday. HA HA.

We didn't have a night nurse last night, so Bella slept with me. She did really good. I think she was up most of the night just kicking and playing. She didn't fuss much. She gets a little closer each day to getting her days and nights back around. Well, we don't have a night nurse again tonight, so hopefully she will sleep!!

Lots of Love!!

Jarikah and Isabella after our walk. I think it wore them both out!!

Ride for Bella has been changed

The Poker Run ride for Bella has been rescheduled for next Saturday due to rain out today. Thanks for all of those who did try however. Billy and Leslie you guys are awesome. Thanks for doing all of this. I hope we get a good turn out next Saturday. Holly thanks for the flyer. I have posted is below, so just scroll down to see the details of the ride for next Saturday.
Thanks everyone!!
Also, I believe the Gudde family benefit got rained out today also. I don't know all of the details about it. I will let everyone know when I find out. Or if anyone does know, just leave me a post.
Thanks.

She is up to 15 lbs!!

Isabella is still doing great. We are working really hard to get her days and nights switched back around. If anyone has any good ideas please let me know. We miss everyone in KC. Matt said today, "I think Becky works tonight, lets drive to KC and see her." I tease now that I am a city girl because ever since we got home, my allergies have gone hay wire. I am miserable with itchy eyes and runny nose. So I am living off Benadryl these days. Well Bella weighs 7.1 kg now which is just a little over 15 lbs. Yeah!! She has outgrown all most everything she owns. I guess that means I need to go shopping!! I was looking at pictures today and I can't believe how sick she used to look compared to what she looks like now. It broke my heart to look back and she my baby girl look like that. Then I look at her now and know that she is a miracle of God. I am sharing two pictures with you today. One is about a month before she got her trach. The other is from yesterday. She is a complete different baby. See for yourself the miracle God has given us. This right here is what we have been praying for everyday. I can't stress enough how faith and believing is everything. I have never lost my faith and believing that Bella will get better and she will be used to show God's love!!

Day two. Still going great!!

This is just a couple of days before going home. Isabella is sporting her Royals outfit from nurse Shelia pictured above. Even though she wore the Royals outfit, her daddy knows she is a Cardinals fan at heart. Well we have been home for a full 24 hours. She is doing great. She still has her days and nights mixed up. She looks healthy and happy so I can't complain. We miss everyone in KC so much. It felt like leaving a part of our family. We will be back October the 3rd for her special care clinic appointment. So, you know we will stop by the PICU to say hello to everyone!! Well, this sounds weird but I have to go and cook supper now for my family. Wow, I am so not used to doing that.

Lots of Love!!!

We Are Home!!

We made it home at 2:30 this afternoon. Isabella did great on the trip. She slept the whole way!! She has been up most of the evening. She is really interested in her big sisters. She seems to be doing just great. It was hard to say good-bye today but it was nice to be home. She looks so good. My mom and dad were shocked at how big she is. We got on the floor on a big fluffy blanket and played. She just looked around. I also got lots of smiles from her. She didn't seemed freaked out by her new surroundings at all. Her sisters and cousins in the picture above with Bella shortly after getting home. Then there is her aunt Erin holding her this evening. So far so good. Keep praying that it all goes well!!!

Lots of Love