What will the new year bring????

Well I think we are all on the mend. I can't remember the last time I was that sick!! Isabella is still feeling a little yucky. We head back to KC on Wednesday for clinic. It is going to be a really long day. First we have special care clinic and then we go to PT for an hour and then OT for an hour. I am excited to see what they say and what they can teach Matt and I to help Bella along. She has been sleeping a lot lately so we haven't really gotten to work with her much. She does that though, she sleeps and sleeps and sleeps and then she sleeps like a normal baby for several days. We call it her cycling. This is because when she does her sleep cycle, she always does something new in her awake cycle. Last time it was she started using her hands more. Also every time she becomes for interactive with smiles and cooing and such.

So now to my question. What will the new year bring??? Well all I can say is that I am ready for a new year. This year has been tough and emotional and crazy to say the least. I know you should never say it can't get any worse, so I am not going to say that. I am going to say however, that I pray with all of my heart that this year is better. I hope we see growth and progression beyond our wildest dreams in Isabella. I pray that she does not have to have open heart surgery this year and I pray that we avoid the hospital as much as possible. Not asking too much am I!! Please pray this with me. This year has been such a year of heart ache and miracles. I would love for 2008 to be more miracles than heart ache. So that is what I will be praying as I am ringing in the new year. We are staying home by the way. My mom and dad will be here and we are just going to eat, play games and have fun.
So here are the pics I promised. I don't have too many really good ones. Bella slept through Christmas completely.



Bella in her Christmas dress with her little headband from her cousin Sami. She is snuggling with Grandma Gudde here at the Gudde Family Christmas.

Christmas morning. This is what she did, sleep. Micah notice the P.J.'s!! They are too cute.

Abby when she opened her Naked Brothers Band shirt. She was really really excited!!

Madison with her new Dr. kit. She was very excited about this because she thought she was going to get to use it on Bella!!

Bella again. She loves that lion.

This is Bella from today. She is sporting one of her new Cardinals outfits from Uncle Terry.

Matt gave Bella a fake tattoo today. It's a little butterfly. By the way, Bella is up to 20 lbs 4oz. She is such a chub!! Good news is, if she really needed her valve replaced right now, she is finally big enough. We are however praying that she does not need her valve replaced for a long time!!

Well that is it for now. Love to All

Busy!!

We have just been super busy around here as I am sure that is true with everyone. Then on top of that, everyone in my house is SICK!!! Well except Bella. She is a little congested and is getting breathing treatments, but she doesn't seem to be as miserable as the rest of us. Lets just pray she does not get as sick as the rest of us!!
Thank you everyone for all of your wonderful Birthday wishes to Bella. She has so much love. It is absolutely amazing!!
Well we only took Bella to one Christmas. Then we spent Christmas day here at home. It was a nice day. Bella slept through the whole thing!!
I will post pictures later, but with everyone being sick and all I have not had time to download them off my camera. Maybe tomorrow if I feel better.
One last thing:
please check out http://gabrielesheridan.blogspot.com There you will find that Micah and Jason are doing a special balloon release in memory of Gabi on January 12th at 12:00 p.m. That would have been Gabi's first birthday. She is doing hot pink balloons and we will all just release them from wherever we are (Jason and Micah will be in Indiana) So if anyone is interested in participating, just check out their blog. Also if you have not every visited Gabi's blog you might just take the time to do so. As I have said time and time again, she was an extremely special little girl and she will forever be missed. We love you Gabi!!
Love to All

Happy Birthday Bella Boo

It was a party fit for a princess!! We had 27 guests present. Each guest got to take a tiara birthday magnet home with Bella's picture. I along with my day nurse spent all week getting cupcakes and sugar cookies ready. We made all of it from scratch!! It was quite an experience for me. Presents and cards came in all week from all of our friends from all over. Bella slept through the majority of her party but we still celebrated in style. I matted the poem I wrote her and put pics from different times over her first year on it. I then had everyone sign the back of it with a birthday message. We put her hair in piggies today for Gabi. She had a flashing tiara. She got tons of presents. She literally got a new wardrobe. She got tons of new toys, hair barrettes, duckie trach ties (thank you Sarah), a new pair of pajamas, a photo album special made by Becky and then some baby legs made special by Aunt Stephanie. One very special gift was from her cousin Sami. Sami took some of her Christmas money and got Isabella the adorable stuffed lion that is in some of the pics above. Also a special thanks to Micah, Jason, Graci, Angel Gabi and baby Kinsley for your wonderful gifts. The video below is everyone singing Happy Birthday, and yes I started crying. I just couldn't help getting emotional about the whole thing. I think I broke down about three times. I mean my baby girl is turning one. She is a miracle in every way. So anyways I hate that everyone could not be here but it just isn't safe for Isabella. We Love you all and thank you for sharing in this day with us. I hope you all enjoy the pics and I hope for those of you who could not be here this helps make it feel like you were. Also check out the dress. It actually zipped up to my surprise. She is actually up to 19 lbs 11oz!! WOW!!

So Happy Birthday Bella Boo, you deserve all your hearts desire.

Almost There

Wow she is almost there. Only 5 more days until Bella reaches her very first birthday, and only 4 more days until party time. I have been party planning and preparing like crazy. It is going to be quite the little event. I am just not sure if her party dress is going to fit. (Sorry Bella but you have gotten just a bit chunky)!!
A little trip down memory lane is in order!! Enjoy a few pics from over the year. I tried to pick ones that depicted this year.


Bella at 3 weeks old. Here she just got back from the cath lab to confirm her diagnosis of Truncus Arteriosus. I used to think this t-shirt would NEVER fit her. Now she could wear it as a night shirt, still too big but doesn't swallow her. She is still stuck at 5 lbs here.






Another picture of our first CMH visit in January. It is hard to believe it has been a year. In some aspects it feels like this year has flown but it also feels like it has been a lifetime ago. She just looks so fragile here. After being in cath lab, she just shot right into Congestive Heart Failure.




My feelings here can only be described as heart broken. When she was diagnosed, I remember feeling like the world of crashing in on me. I felt more helpless than I have ever felt in my life. I can't even find the words to describe those days.





This is the first time I saw Bella right out of open heart surgery in Feb. I remember standing at the door of her PICU room afraid to go in. I was afraid of the image of her laying there with her chest open being etched in my mind forever. I was afraid for her. I again have never felt so helpless in my entire life.





This was her third stay in May. She is the same size here that she was in February. She couldn't gain any weight because she was using all of her energy just to breath.







Here we are in June. Bella was feeling pretty good at this point.

Back again in June to get a trach. We didn't have any other options at this point. After being in respiratory distress so many times, Matt and I were releived to finally be moving forward. So in other words, we welcomed the trach with open arms.

Well you know the rest of the story. Since July we have suffered some brain damage from either low blood sugar, high temp or lack of oxygen, who knows. We were told she was blind and deaf but she regained her hearing and her sight is improving. This picture was taken on the 12-

12-07, so just a few days ago. I will tell you what I see. I see a happy baby that know nothing but love.

She is so precious and wonderful to me.

TO MY PRECIOUS BELLA

God has great plans for you my little one

They said you wouldn't make it

But your time here is not done

You have surpassed all expectation and wowed us all

With your courageous fight and will to live

Our precious baby doll

One year old you are

I can't believe it's true.

I can't believe the way this roller coaster of a year

just flew

For you my baby girl I pray for many years to come

I pray that you continue to wow them all

and even baffle some

So Bella Happy Birthday, this is

A Monumental event

Because something this truly special

Had to be Heaven sent.

Love Always and Forever, Mommy

I will be keeping everyone updated on Bella's Birthday. And as promised I will be posting tons and tons of pics. I would also like to thank everyone who has sent gifts already!! It is touching to know that my little one has touched so many of your lives. I love hearing about how she has captured hearts. It amazes me that children like Bella can have such a powerful impact on the world.

Love To All

Snowed in

This is what we woke up to this morning. So it obviously got us into the Christmas spirit at our house. This was taken right out our front door. I was not willing to leave the porch!!

Bella of course stayed inside where she was nice and cozy. If you could not tell I grew up in the 80's and 90's. Poor Bella she is the one who has to suffer!! She looks cute thought doesn't she?? We have discovered baby legs. They are wonderful for her since she has a feeding tube. They are just like leg warmers and make it easy to get to her feeding tube but keep her legs warm like pants. I made this pair. I just went to wal-mart and bought some women's knee high socks and cut them up a bit and sewed some cuffs in them. I made them for around 2.50 a pair instead of $12.00 a pair.

The girls begged and begged so we finally took them outside. They loved it!! It was not snow man building snow so they were a little bummed. Actually Abby wanted to build a snowman and Madison wanted to build a carrot. I don't think she understood the whole snowman building process.

After they played in the snow they came inside for cups of hot cocoa.

On top of all of that, we worked on potty training today with Madison. We only had two accidents!! We had the Christmas music blaring all day and we spent time making candy and wrapping the rest of our Christmas gifts. It was definitely a good snow day.

She giggles

Isabella is quite the little giggle box now. She has been giggling at everything today. We went from no smiles to a few smiles to now all out giggling. You talk to her she giggles. You make funny noises at her, she giggles!! And she smiles all of the time. My cheeks hurt from smiling back at her so much. I just can't believe the transformation in her. Literally overnight she has come leaps and bounds. It seems like over the last few weeks, she has just started transforming. I knew it was going to come and I waited. So now here we are. I think I can safely say she is back to what she was in July (before the brain damage). She is smiling all of the time and sooo interactive with us.
She still has some trouble using her hands, but she is getting the hang of that too. She can hold onto small things that her fingers will wrap around. She will reach for things but is not able to control her arms that well. Her feet and legs however are a different story. She will reach for her mobile with her feet. She raises them in the air so she can kick it. She kicks her kick-n-play all of the time. So I am going to work on getting some video tomorrow of her doing all of her new really awesome stuff. You can't hear her laugh because she doesn't make that much noise over the trach, but you can see it and feel her laughing. It is just really way too cute.
Oh and we are also working on sign language. I am going to try to teach her. The only word I have worked on is mommy. She doesn't obviously respond to it, but she does look at me while I am doing it, so hopefully she will get the hang of it.
Also one last thing she did was I helped her to a sitting position the other day, and she sat unassisted for 45 seconds!! She is getting stronger everyday and fatter. She is almost 19 lbs. They had to decrease her calorie intake (I think I already mentioned that) So don't mistake the puffy cheeks in her pics for heart failure puffiness, it is actually just chub. She has not had any edema in months and months. She doesn't turn blue anymore and she doesn't mottle on her legs anymore. Oh and most important, her murmur is so quite that you have to really listen to even hear it.
Okay I just deleted something on here that I put last night. It was my two cents on something someone said about Isabella. Some of you probably read it. Otherwise for those who have not read it yet, I am sorry but you won't get a chance. I slept on it and got up this a.m. and realized it was a little harsh so I took it off. I just need to realize, that not all people see Bella the way the rest of us do. All of the love and support I have gotten from my comments and from some of you in person is all I need. Thats all Bella needs is positive people. We all have hope!!
With much love

The weather outside is frightful!!

ICE!! ICE!! ICE!! I can't beleive the amount of ice we have. It is a winter wonderland out there and it is going to continue that way for the next few days. So no school today and probably not tomorrow. We had to deal with our first electric outage since Bella being on the vent. Thankfully it came back on within an hour so we did not have to transfer her. We are still having little brown out and black outs today. Lots of our neighboring towns are out of electricity and will be staying that way for some time. It is pretty, the ice. So we are trying to come up with lots of indoor activities to occupy the kids. I think we are going to attempt to make some paper mache ornaments this afternoon. (YIKES)

SANTA'S LITTLE HELPER PICS

As promised here are some pics. Thank you Micah and Jason for saving the day with your camera.

My kids fell in love with Jason!!

Massive amounts of gifts. And this isn't even all of it!!

Madison hanging out on the table.

A wagon full of stockings. We also had another wagon full of gifts that would not fit in the stockings.

Abby and Madison helped Micah put together candy bags.

Also, visit Micah's site at http://gabrielesheridan.blogspot.com/ Micah has tons of pics.

All of us!!

What a day. The girls were out before we even hit the interstate. They were exhausted. (Yeah my camera decided to work after it was all over, that is how I obtained this pic!!) Go figure!!

I meant to post this pic last week. This is Becky and Bella on Wednesday before her appointment.

This is Bella sporting her santa hat from Micah. It fits her just right. So we are going to keep putting it on her to see when she grows out of it to prove her head is growing. Also note that she is smiling and obviously interacting with her Aunt Stephanie here. You can just see it in her eyes!!

So enjoy the massive amount of pics. Pray we keep our electric because I really hate to have to move Bella to the hospital in this cold weather. Not to mention if we have to go plug in at the hopsital, there will be tons of sick people there!!

Love to All

Delivery Day

Well it was a success. We made it to KC and back today without hitting too much ice. Only problem, I did not recharge my camera batteries so I have no pics. However, Micah took lots of pics, so I will be posting some of those. She will e-mail me some pics on Monday or so when she gets back to Indiana.
So first off, I would like to thank everyone who donated items, bought shirts or donated money. We had tons of great stuff for all of the stockings. We did 21 stockings today (12 of them were babies). We stuffed them full of toys, books, gift certificates to the movies and McDonalds, we had stuffed animals, coloring books, crayons, dinosaurs, jewelry, pretty princess make-up, candy, ornaments, magnets, barbies, finger puppets, jingle bell ornaments and more stuff than I can remember. We also had a flannel blanket for each baby in the PICU to give. We did not get to personally give the stockings. You know HIPPA violations and then of course the germs!! So the only down fall is that we did not get to see the children's faces. However, one of our fav nurses is helping pass them out, and she said she will e-mail me and let me know how it went!!
Abby and Madison came with us and they had a blast putting together candy bags. And of course it was awesome to get to spend the day with Micah and Jason. It had been like 3 months since we got to see them. So all in all it was pretty wonderful. On the way home I told Matt I was ready to start shopping for next year!! We are definitely going to make this an annual project.
So again thank you to everyone. Like I have said before I could not have done this without the love and support of all of you. This was something really important to us and I am glad it was a huge success.
Stay tuned for pics from today. Also check out http://gabrielesheridan.blogspot.com/ for Micah and Jason's site.

Frustrated!!

Today we went to KC to clinic. Everything went well. We got to see Becky (one of our favorite CMH nurses). We then went to clinic. Isabella slept the entire time. She was awake for the entire van ride but as soon as we got to the hospital, she went to sleep. She got 6 shots!! POOR BABY. She did wake up for that, but went right back to sleep. They cut back her calorie intake because she is gaining too much weight. She is almost 19 pounds. Everything looked good except for her head growth. Her head is growing , but not enough for the Dr's. They fear that since she is not growing like she should, her head I mean, that she may have suffered more brain damage than we know. The Dr. is unsure of how much function Bella will ever have. She talked like it could be as bad as never progressing much more than she is now. She said there is no really good way to assess brain function. So it will just take time to find out what we are dealing with. So even though this is something I already knew, it felt like I was hearing it for the first time. I was in shock. Like how could they actually think that my little Bella was going to be mentally handicapped. And not just a little mentally handicapped, but severely??? What?? this can't be happening. I don't think I can take much more news like this. It seems like it is always one thing after another. I just want to know RIGHT NOW!!! See I am loosing my virtue of patience. I feel like we play the waiting game everyday. We never know if she is going to crash again, we don't know how severe her brain injury is and the list goes on and on and with other what ifs that I am even too scared to write about. So when does the waiting stop. When do I feel like okay this is it, she is going to be fine. I know none of us is guaranteed tomorrow, but I feel like I am forced to think about it everyday. It is a real fear for us. So anyways back to what the Dr. said. I have to disagree with her head size. Yeah, it is small. Okay so she does not measure on the growth curve. Well I think I know why. For one she was born with a really small head. 14 inches to be exact. Well that is the size of an orange, or somewhere around there. Then it is said that when a baby is in a coma (drug induced or not) they don't have much brain growth. Well Bella has been in a coma for a big portion of her life. And then yeah she did suffer some brain damage, but the MRI only reflected it to be the part of the brain that effects her hearing and sight. So I need your help. I want some opinions here. Yes I may be on of Isabella's nurses but I am also her mom. I don't know if I always see things for what they really are. I think when I look at her, I see a perfect precious little baby that I love with all of my heart. I know she is really behind but why wouldn't she be. Well I just don't know anymore if I am seeing that much progression with her, or I am fooling myself into believing she is getting better. I know she is getting stronger. So please for those of you who follow the blog and see pics of her and for those of you who see her in person tell me what you think. Is she getting better cognitively or am I dreaming. I don't think I can see the real picture anymore. I just wonder if I am seeing what I want to see. But don't get me wrong, I love Bella and in all retrospect, none of this is really that important. She lived!! She made it through more than anyone could ever ask a person to go through. So regardless of the outcome of her brain, she is a special little girl. I hope she changes the world. I don't want to seem like I am not thankful, because I am. Trust me, I thank God everyday for what I have. I just love her so much and I hate to think that she may never go to school or the prom or get married. I know I know. I don't know why I am doing this to myself, but I need to let this all out. I try to make it all rainbows and sunshine all of the time, but I can't. This is real and these are my true feelings. I am scared to death!! I am scared of what our future holds and I am scared of how to deal with what God has in store for me next. I know he will give me the strength and the courage to face all of my trials to come. I know he has a purpose for all things in life. So I am going to stop rambling and go hold my precious little Bella Boo. Thank you all for reading this. This was not intended to be this emotional but as I said I just need to let it all out once in awhile or I might just go CRAZY!!!
With Love

Okay I have an addition to this post:
I published it and then I decided to go back and read through all of Bella's old blogs. Now I can say without a doubt that I know Isabella has shown improvement since August. It may not be major stuff, but little stuff here and there. It is enough to give me hope. So also thank you Hillary and Amy for your words. Sometimes I forget how God has brought such special people into our lives just since having Bella. Also not to mention I would have never started the ministry. Also I don't know when I would have taken the time to have a personal walk with Jesus Christ. As I said before, I don't know what God has planned for me or Bella or anything for that matter, but I am going to embrace each moment. I think it may be easier said than done but I am going to try.
It is amazing how one can feel better just by letting it all out once in awhile.

say a little prayer

Today when I was unhooking Bella's feeding tube, I noticed a little coffee ground like substance coming from her tube. Well that is what old blood looks like coming from the stomach. So I burped her, and I saw there was quite a bit of old blood. So I called the Dr. just to make sure. I assumed that it was probably just a little trauma to the site that was causing it. She likes to kick and is very active with her legs. She sometimes gets that tube caught up and pulls on it. Well the Dr. agreed that it probably was trauma. So that is what we are going with right now. They will do a thorough check tomorrow in clinic just to be sure. I hope that is all that it is. So just say a prayer that it is really nothing and that we don't have to worry.



Okay, so last night we took our holiday photos. Let me tell you, the kids were not cooperative. This is the only photo that Bella even opened her yes for. She was awake for like two seconds. Oh well she is just as beautiful when she sleeps. We took her off the vent for the pics mostly because I didn't trust Abby holding her with all of the tubes. She did great!! I still have to do some cropping, red eye removal and all that fun stuff before they are Christmas Card ready.


Also I have not heard from the printing company yet on shirts. They should be ready sometime this week. I told them I would like them before Saturday so we could wear them when we go up to deliver gifts.



So we will be heading out in the morning for KC for clinic. We are going to see Physical and Occupational therapy. We are also going to discuss possibly being able to take her off the vent for about two hours per day. I am really excited about that. I think if she could be off the vent for a few hours a day, it will give her more range to move around. She will most likely get some immunizations tomorrow. YUCK. So it should be an event filled day.