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!!

A video full of smiles

This will melt your heart!!! Aunt Stephanie and Daddy get Bella to smile. This is the baby that I have been missing for all of these months. When she suffered brain damage, I was soooo thankful that she lived through her cardiac arrest, but at the same time I was grieving for the loss of the Bella that I knew. She wasn't the same anymore. She wouldn't smile and she couldn't see. I couldn't hardly even look at the old photos of her from July when she came home smiling and happy, because now she just looked lost and vacant.
It was hard to accept a diagnosis of a heart defect but I accepted. It was hard to accept another diagnosis of DiGeorge and the many complications that may go along with it, but I accepted. Then they put a trach in my baby and sent her home on the vent. Wow that was a tough one, but we accepted it. Then my baby suffered brain damage and she woke up a different baby!!! That was harder than all of the other events put together. One blow after another, you think "There is no way I can handle just one more thing!!" But you know what God gives us the strength and the courage to continue on. You may be moving day by day just barely hanging on and only living because life just keeps happening and there is no way you can stop it. But God is there. I know he has carried me almost everyday during the last 10 months. So when you finally get a precious moment like this on video, trust me it is worth a million dollars!! I want to share this beautiful smile with all of you. This is proof that miracles happen. Thank you for all of your prayers. Isabella's progress is phenomenal to say the least. She is one of the strongest most courageous people I have ever had the pleasure of meeting. Gabi Acker is the other. We love you Angel Gabi!!
We love you All!!!!

New Bella Pics

Sweet Bella Baby Face!!

Bella sitting up with just a little bit of help from daddy. She is getting sooo strong!!!

Bella laying on her side last night. She rolled over right after this pic was taken.

Tummy Time. I know she is sooo cute!!

Punk Rock Baby. Sporting her pink, black and silver. I made her a silver bow to go with the outfit and she has on black leggins with silver hearts.

Here she is off the vent for a few minutes. She does really good off the vent for the few minutes a day we take her off. I am hoping the Dr. lets us start taking her off a couple hours a day. I think she is ready. She is able to get great Tidal Volume (take good deep breaths) when she breaths on her own. She also is able to hold her o2 sats off the vent.

Bella is now pursing her lips together like a baby does when she coos. Then you can hear her make a little bit of noise around her trach. I think she is trying to communicate by sound!! YEAH BELLA!!

A Night Out!!

Well just when I thought I was going to just finish going crazy, I finally got a break. I have not been getting any sleep. And when I do have a nurse, I still can't sleep. I realized today that I have not really slept in almost two months. I don't even feel like myself anymore. I am super sensitive about everything and I am just really really really tired!!! I went to bed at 6:00 a.m. this morning. Then I slept off and on today. So this evening, we had a nurse (Aunt Stephanie) so Matt and I went out!!! We went out for dinner. It was really nice just to get out together. So after we ate, we went and shopped for a little bit and of course spent money on the kids. It was fun. We were only gone for a few hours but it was a few hours much needed. So I am going to make this short because I took some Tylenol P.M. I have a night nurse tonight and I am going to hopefully sleep. I can already feel the Tylenol P.M. kicking in. I know it is sad to have to resort to medicine to sleep, but hey whatever works, I am desperate!!

Mommy's pulling another all nighter

Well I guess I am going to do the night shift again!! I think I am starting to get severely sleep deprived. Bella does good all night. She sleeps all night and we just put a crib in our room so she can sleep right next to my bed. However, she eats at midnight, she has a med at 2:00a.m. she then eats again at 3:00a.m. and then eats AGAIN at 6:00a.m. Then I get Abby up at 7:00a.m. and get her ready to be on the bus by 7:30 then Maddy gets up around 8:00 and so starts my day. Nursing shortage stinks!! I know when I was a Director of Nursing it was really hard to find new nurses and I always ended up covering the floor. I kind of feel like I am now the DON of my house. HA HA!!! It's not a bad job though. You can't complain when you get paid to take care of the sweetest baby ever!! Just pray that my husband does not kill the grumpy sleep deprived me!! It is hard sometimes. It is almost like having a newborn again except she is almost 10 months old. I can't believe how close to a year old she is. You always REALLY celebrate that first birthday, but with Isabella it is going to be a CELEBRATION!!! They told us it would be hit and miss for her to even make it to her first birthday. They also told us that the first year will be the hardest. So hopefully they were right about it being the hardest. And maybe it will start to get lots better. I had this overwhelming feeling yesterday morning that things were going to change soon in our family. I can't explain it but I know that it was a really really happy thought. I just imagined Isabella doing so much better. I have started to have dreams of her off the ventilator. Wow wouldn't that be wonderful!!! They said in the beginning she would probably be off the vent by two years old. I pray everyday that they are right. Well I am starting to ramble, so I leave you with pics of my sweet baby!! ENJOY!!

LOOK she is smiling!!! It is really hard to catch the full fledged smile on camera but you can tell she is happy!!

Another of her smiling!!

Bath time on Sunday. Can't you see how chunky she has gotten. Look at those baby rolls!!

I know she is not doing anything in this video but I know that all of you die hard Bella fans that have not seen her in person for awhile will appreciate even the most simple of videos!!

I Know!!! Finally a new Post!!!

See how she is looking? She is actually focusing on her mobile. I have noticed why she is not seeing out of her left eye though. Her left eye is staying dilated all the time. It reacts to light but very slightly. So hopefully this improves.






Tonya from Craig Home Care (our nursing agency) just loves Bella to pieces. All of the ladies loaded up the other day and came to visit Bella. Tonya says that Bella is "famous"








Great Grandma Smith after weeks in the hospital herself after suffering a stroke, she finally gets to come over and hold her baby. She was overcome with joy.






Sheryl, the DON at Craig Home Care, just loves Bella also. This is the first time Sheryl has seen her since we came home the last time, so I am sure Bella looked like a GIANT to her!!






So everything is going really good. I have been very busy just working for Bella, being Bella's mommy and also being Abby and Madison's mommy. And not to mention the endless laundry, dishes and other household chores!!! I tell you it is hard work being a stay at home mom. So if you are a stay at home mom, don't ever let anyone tell you that you don't have a job, because you have a HUGE job.
They changed her formula again. This time they have changed to Progestamil. It is completely broken down. We have to wait to get WIC to change our vouchers for this because it is almost $40.00 a can. She has not thrown up in over 24 hours!!!
So prayers are working, working, working!!! Everyday I see a change in her. She is getting more alert and more interactive everyday. And to think they once told me that her movement were not purposeful. Well, she reaches for toys and she bats my hand when I try to suction her nose. What can I say, she is super baby!!
Love to All

I think we figured it out!!!

Well I think we know what is wrong with Bella. It seems like the only time she throws up is when we mess with her trach. It is like she gets gagged. She doesn't throw up any other time unless she gets to coughing really big. So I think if we can just keep her hydrated and be a lot more cautious with her trach, it will cut way down on the throwing up. I just know she is not sick. She acts great and keeps improving every day!! I want to share the lyrics from this song with you. It is by Casting Crowns. Everything about it just seems to speak to me about what my life is like right now. It is good to know that God is Good and he will be here for me through the "Storm" Also here is a link to let you hear the song. But please take time and read the words. They are sooo powerful!!! http://www.youtube.com/watch?v=uHdcyue0bSw

"Praise You In This Storm"

I was sure by now

That You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say "Amen", and it's still raining

As the thunder rolls

I barely hear Your whisper through the rain"I'm with you"

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

I'll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

Every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I remember when I stumbled in the wind

You heard my cry

You raised me up again

My strength is almost gone

How can I carry on

If I can't find You

As the thunder rolls I barely hear

You whisper through the rain"I'm with you"

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

Prayer needed here

Bella is still throwing up some. She seems to only do it when she gets gagged. I really hope that is all it is. She seems fine however. She is happy and playful. She finally has her days and nights on the right track again!!! I just worry. It is hard to make that constant worry go away. It has been really hard lately for me. I can't really explain what it is because I can't seem to put my finger on what is bothering me. I don't know if it is that we are only two months away from her first birthday and I realize it has been almost a year of this!! It is frustrating. I am thankful for all of her miracles and I am thankful for how just knowing her has completely changed my life. But sometimes I want to be selfish and say "Why Me!!" I have to pray for my strength everyday. Am I going crazy?!?! I feel like I am sometimes. It has just been a CRAZY year. I think sometimes "Did I sign up for this?" But none the less, I would not give up or change anything about Isabella. She is the most wonderful baby. It was definitely love at first site. So here are some older pics of Bella. How could you not fall in love with that little peanut!!!!

Lots of Love!!

Here are Bella and I in front of the Christmas tree. Believe it or not, I had just delivered her only 24 hours before.

Bella's first bath at home!! She still uses that bathtub, but she definitely fills it out now!!

I just love this one of her. She is sooo sweet.

Just Another Day in Paradise

Well, it wasn't really that exciting. It started off a little exciting when we were doing trach care this morning and Isabella started to throw up. So we had to quickly change her trach and bag her to make sure that anything she aspirated came back out. So I called Dr. Gratney. We started back on the pedialite for a few feeds and now we are back on formula. She still thinks she has a viral something or another. I just don't know. She seems to be doing really great though. She was very interactive today and smiled more than normal. She reached for toys and even grasped some rings on her own. So these are all really good things to see. I know she has improved soooo much. I was just thinking today about how far she has come since July 30 when she suffered brain damage and we almost lost her. I can't believe that just a little over two months ago, they actually had to do chest compressions on my baby girl. I hate to look back at those times, but sometimes I think I need to in order to understand and realize the greatness of the miracles we have seen in Bella. So tonight, I share with you photos that reflect upon the last two months. You will notice the huge difference. I think if anyone wants to be able to really see a miracle, they will see it now.

Bella sedated the first part of August. They even had her on a paralytic so she couldn't move at all on her own.

Waking up and not being able to see.....I can't imagine. I don't care if you are 7 months old or 90 years old, it would be scary. It is obvious here that Bella had no ability to focus.

I have not shared these pics with anyone, but like I said, I think it is important for people to see how far she has come.

Now at home sitting with her sisters!!

Now look at her!!

She Can See!! Well at least a little Bit!!

Well first off, thanks for all of the prayers. Isabella has not thrown up in 24 hours. She is back on 1/2 strength formula and seems to be doing okay with it. Today Birth to 3 came and so did the visually impaired team. They did a lot of visual stimulation to see what she could see. Well, she responded to almost everything they put in front of her. She tracks better from the right side and seems to focus on the right side much better. When you move an object to her left visual field, she seems to loose it a little bit. She even reached up for some of the objects. So this was really really good news. Basically it just confirmed what we already knew. Yeah she is going to need a lot of work to get her vision back. And it still does not mean she will ever get all of her vision back. They did say however, the more we work with her, the more her brain will retrain itself to see!! They are going to also send an audiologist to check her hearing. We all know that she has re-gained at least most of her hearing. This will help up confirm what she really can and can't hear. She responds to all noise that I have noticed, so I believe she can hear just fine. She will soon start getting physical, speech and occupational therapies. She has a tough and long road ahead, but I know she is one tough cookie so she will regain her strength. Oh, and she shook a rattle today!!! This is really big. She basically has not done any of that since her last episode in July. I am still waiting for her to start smiling spontaneously again. But, I know it will come and when it does, it will be so wonderful.
CHECK OUT THE NEW AND IMPROVED BLOGSPOT. I HAVE ADDED NEW PICS. LET ME KNOW WHAT YOU THINK. MY MOM DOESN'T LIKE IT. SHE SAYS IT IS HARD TO READ BECAUSE OF THE COLORING.
Love to All
Megan, Matt, Bella, Abby and Maddy

Doing a little better

Well we have had two hours of pedialite. She seems to be doing much better. Dr. Gratney wants her on pedialite for 24 hours and then we will probably start her on some new kind of formula. She thinks that Isabella is unable to digest regular formula. She doesn't know if the throwing up and getting dehydrated is what causes her to go into cardiac and resp failure or if it is the other way around. Well she is keeping the pedialite down. She is perfusing much much better now. So keep praying and I will keep posting. Thanks!!!

Please Pray

Isabella is not feeling well. She was throwing up all night. Her perfusion looks like crap right now. She is puking up yellow stomach acid. I called Dr. Gratney (her vent Dr.) She put her on pedialite for the next 3 hours. I have to call her back at 10:00 a.m. with an update. If she is not better, then we will probably have to take her to her pediatrician and then possibly fly her to CMH. She is running a low grade temp, so I know she is dehydrated a bit. I don't think it is the stomach virus. Her capillary refill is about 2 seconds right now and her legs are a little mottled. I know this probably doesn't mean a lot to some of you. It just means that her heart is not pumping the blood as strongly as it needs to. I listened to her heart, and it sounds great. Her rate is 144bpm and her respiration's are in the 40's. She seems happy. I just can't figure out what is going on with her. I am sooooo scared. I don't know what to think. I just want her to stop throwing up. The throwing up puts to much pressure on her little body and causes her to crash. So please start praying. Tell anyone and everyone you know to start praying. I will re-post after 10:00 a.m. with an update as long as I can. Of course if we end up having to leave with her, I will not be able to post.
Love to All

Under Construction

The site is currently under construction. I am working on making a new background. Keep watching!!
Love
Megan

Isabella with the first miracles happen basket

Look at that sweet baby face. She is now 17lbs 9 oz

My beautiful friends Brenda, Sharon and Crystal serving food at the Gospel Sing. I know as soon as Brenda sees this she is going to kill me!!

Well, the Gospel sing and the raffle drawing both went really well. Thank you to everyone who helped, donated and came. A special thanks to the Lighthouse church in Mound Valley for your love and support. Also a special thanks to the entire Gudde family for your continually dedication and love for Matt, me and the girls. We love you all. And last but not least, a special thanks to all of the ladies of Deseret Health Care. I miss all of you and love you all.

Isabella is doing well. She has been having some episodes of throwing up. It has only been happening once a day and only at night. It is when her stomach is empty and she is throwing up the acid stuff. I don't want to freak out about this, but sometimes I do. She is still doing awesome from a respiratory and a cardiac standpoint, but I still get scared. The throwing up has always lead to the hospitalizations. It is not following her normal pattern though. But if I could just ask everyone to pray just in case.

Even though we are home, it is still hard. I am really nervous a lot about what is going on with Bella. I have just had a rough couple of days. It is not that she is doing bad or anything like that. I think I am just tired and letting my thoughts get the best of me. I just want so badly to know that the worst is over with Bella. I wish I could just know that she is going to forever be okay. But I know that that is not an answer that I have privilege to. I know that only God knows. None of us our promised tomorrow. I am sorry to sound so down, but I just have days like this. It is hard to stay strong day in and day out. Sometimes I just want to get in my bed and stay there. These are the times however, that I just ask God to completely carry me. For he has carried me completely since January when Bella was diagnosed. Without him, I would have never made it. I still have faith everyday!! As I have said before, I have to walk everyday by faith and not by sight.
Thank you all for your love and prayers.

If you have faith like a grain of mustard seed you can say to this mountain, Move from here to yonder place and it will move; and nothing will be impossible to you. Matthew 17:20

Miracles Happen Ministries

Well we would like to announce that we are starting a ministry in honor of Isabella. She has shown us so many miracles. She has taught so many the love of the Lord. I can't even begin to really explain how much Isabella has changed people's lives. She has really changed Matt and I. I look at life completely different. I can't believe for all of those years, I have been missing the big picture of it all. It is not about "things" and "stuff" life is about loving and being loved. It is about knowing who you are in Christ. I look at the me from even 6 months ago and I can't believe the change in myself. I find myself praying all of the time or just talking to God.
So many people have helped Matt and I and we want to be able to help other families as well. It is hard when your child is critically ill. So we decided to start with Chelsea's family. We put together a basket and filled it with snacks, a phone card, books for Chelsea, a photo album and a blanket my mom made. Yesterday after Bella's appointment, we went up to Chelsea's floor and I went in to meet her and her mommy and gave them the basket. I tell you what it felt awesome. After meeting Carey and Chelsea yesterday, I know that this is what we are suppose to be doing. It wasn't much, but when Matt and I were there we loved the little gift baskets. So, that is kind of how we are going to start. Gift baskets, blankets, phone cards, gas cards, ect. Well we don't have a really good way to fund this yet, so we are working on that. We do know that we are getting ready to sell Miracles Happen T-shirts. They are in the design stage and should be ready to present and sell sometime by the first of next week. I will be putting a sample on the blog for anyone who would like to purchase one.
Back to Bella's appointment: As I said last night, she is doing really great from a cardiac and respiratory stand point. We don't have to come back again for one month. Well, they gave her immunizations and she got SICK. She started running a fever and throwing up. This went on until about 3:00 today. She seems to be feeling better now. As I always say, Miracles do happen. Her valve is less leaky and things are going in the right direction. She is will be slowly weaned off the vent (like over the next few years) and hopefully she will not need open heart for many years to come.
Love Always
The Gudde's
I will post pictures in a little bit!!

All is Well

I am really tired so I am going to make this short. I will post more in the a.m. but I know everyone is wanting to know how the appointment went. The valve that is leaking, used to leak severe and is now leaking mild!!! Cardiology said she is very stable. They said she has gained a little too much weight. Everything looked great. I think everyone was happy to see that she is doing so well.

So that is the short version of our day. I have lots more to tell everyone so I will get some sleep and post again in the morning.

See miracles do happen!!!

Love

Megan, Matt, Abby, Madison and Isabella our Miracle baby!!

Oh yeah, Bella weighed about 17 1/2 pounds today!! Chunky Baby!!

Tomorrow is the Big Day

Well, tomorrow we are headed to KC for our appointment. We have cardiology appointment at 1:00 for an echo and then we have special care at 2:30. I think we are going to try and leave early so we can stop by the PICU to see everyone before cardiology.

Please say a prayer for Micah and Jason, they are moving to Indiana. Jason got a job there. I think they left today.

Also here is a picture of the quilt they are raffling off at the Gospel sing on Saturday. You will need to click on this image to be able to see it better. Sorry it did not scan well!! If anyone is interested in chances please e-mail me at megangudde@hotmail.com

Isabella made front page news again. This time she was on the front of the Craig HomeCare Newsletter. I have put this on the bottom of the blog for easier viewing. So wish us luck tomorrow. I am hoping they will let us start trach trials with Bella. This means she will get to be off the vent for certain times of the day. Oh and she has gained another pound. She is up to 17 lbs. I will say it again, miracles happen!!

Love to All!!!