Isabella

First Day of School for Bella

2010-02-04T13:49:00.000-08:00

Today was Bella's first day of home school. She did so good. She was in her stander for 30 minutes!! Her new therapist showed us all kinds of new stuff for us to do with Bella. I feel really good about the therapist and what she will be able to do to help Bella. It was a great day!! I couldn't be happier with the way her first day went.
Now off to the library with all the kids :)

Wordless Wednesday

2010-02-03T07:14:00.000-08:00

It's been a long time and I miss blogging!!

2010-02-01T14:47:00.001-08:00

Hmmm. Where should I start??

We have been busy over the last few months. Annie gave us a couple of big scares. She had a massive grand mal seizure at the beginning of December. It was completely out of the blue. She was laying next to me in bed chattering away and then the next thing I know she is seizing. I panicked. Even after all I have been through with Isabella you would think that I have learned to stay calm under pressure....not this time. I FLIPPED. I was home alone, so I called the paramedics. My sister rushed over to be with Bella and the other girls. Matt was making a mad dash home from work. Annie had been seizing for 20 plus minutes at this point. She was turning blue. The paramedics gave her Valium and ativan to stop the seizure but in turn she needed help breathing. So in my living room they intubated yet another one of my babies. We took two med flights that night and ended up in the PICU at Childrens Mercy. They had no reasons for her seizure and she has had two since. She is fine other than that. She is perfectly healthy and happy. They are not going to put her on medication unless she has another. So it is just wait and see. The last two have been less traumatic. The Valium they gave us to give her at home stops the seizures, Thank God!!

On a happier note, she is pulling up to everything and cruising around the furniture. She is such a ham!! I love her sweet smile :) She will be nine months in a few weeks. It just does not seem possible.

As for miss Bella. She is doing great. She is starting home school next week. She will have a PT, OT and speech therapist come in once a week. She will also have the preschool teacher coming into our home once a week. I am so excited for this new chapter in Bella's life.

As for the vent, she is off all day (13 hours) unless she is sick. I am so proud of my Bella Boo. She defeats the odds and surprises us each day.

Abby and Maddy are great. The are getting so big. They are such great helpers!!

We are good and other than the few curve balls that get thrown our way......Life is great

Annie at Childrens Mercy in the PICU

Bell, Annie and Maddy

Matt and I with the girls at their baptism
Maddy with her Godparents

Annie with her godparents

Bella with her godparents

Christmas morning

Annie at the hospital

Life at the Gudde House

2009-12-03T06:55:00.000-08:00

All dressed up for Halloween. Bella was a black cat. Abby was a witch, Madison a vampire and Annie was a skeleton.

Annie playing with Bella.

Isabella is growing up so fast. She is almost as tall as Madison and is weighing in at around 30#. We took her to the seating and mobility clinic at Children's Mercy this week. They fit her for a kid cart which is kind of like a wheel chair. It will be really nice for her to have when she starts school next month. I can't believe she is going to be three in a few weeks. I am just so proud of the her and all that she has accomplished thus far. She is a mover and a shaker. She scoots all over the place on her back. She is (on good days) off the vent for almost all waking hours. She is doing so well. I just can't even put into words how proud I am of her. I thank God everyday for her being in our lives. She is such a blessing.

Annie is getting so big. She is almost 7 months old. She is crawling all over the place and is trying to pull herself up. She is a little chatter box and just loves being around her big sisters. She is such a joy!!

Abby and Madison are great. They are loving school. They are such good big sisters and are always helping me out with the little girls.

MERRY CHRISTMAS!! GOD BLESS

Isabella is almost of preschooler!!

2009-10-27T06:21:00.000-07:00

That's right, Isabella is suppose to start preschool in January. I don't think she will actually start in January if the flu is still this thick around here, but she is eligible to start then. I can't believe she will be three in two months. It is crazy how fast this last year has gone. We are continuing to wean off the vent. She (on good days) can be off the vent for up to 11 hours!! She is rolling all over the place. She may not be able to crawl or walk, but she makes up for it with rolling and scooting :) She follows commands like when you ask her to activate a toy she will. She seems so aware of her surroundings. I can't really explain it, but she laughs and smiles at appropriate times. She has her own way of interacting in a conversation. She doesn't talk or sign, but she has her own body language that lets us know that she understands what is going on. She amazes me everyday and I thank God everyday for our little miracle!!

Annie is growing like a weed. She is now 5 months. She says da da da, na na na, ba ba ba. She can sit up on her own for a few seconds. She is also trying to crawl. she gets up on all fours and rocks. Her and Bella are the best of buds except when Annie pulls Bella's hair and then Bella starts kicking Annie and both babies start crying. (it is really kind of cute)

Madison and Abby are enjoying school. Abby is now having to wear glasses. She takes after her mommy and daddy and is as blind as a bat. So, other than trying to ward of the flu, we are all doing great here. The kids keep me busy. What more can I say!!

SORRY!!!!

2009-09-15T06:18:00.000-07:00

We are soooo busy around here now that school has started. Everyone is great. Annie is rolling over and laughing out loud. Isabella is staying off the vent most of the day and is really only using it at night. Except the last few days she has had a lot of sinus drainage so we have been on the vent more than usual. We went to Kansas City a few weeks ago for our regular check up. We are working on starting to eat by mouth. She is getting so big!!! Abby is in second grade and Maddy is in her second year of pre-school.

Enjoy the pics. They are first day of school pics and then wedding pics. Matt's brother got married last weekend and Matt was the best man and Abby the flower girl.

Picture Galore

2009-08-05T20:17:00.000-07:00

Now this is what I call BED HEAD!!!
Any and Bella at Kaleidoscope at Crown Center. Erin and I made them tiaras.

Outside of Kaleidoscope. Abby and Maddy with Grace and Kinsley Acker. The girls had a blast together.

Aunt Erin and Maddy showing off the bows they made at Hallmark

The lego display at crown center. It was awesome. I didn't know they could do such things with legos!!

Lego man looking in lego mirror at lego self!!

At the Dr.'s office for Bella's check-up. She had a great check-up. She is off the vent pretty much all day now. She continues to need it at night and periodically throughout the afternoon and evening. She is moving right along though and doing fabulous.

In the car Bella was snuggling with Annies blankie and laughing at something

Precious!!!

Maddy wishing me a happy birthday

Uncle Kevin pretends to give Maddy a ride.

Funny girls

My sister Erin, our best friend Amber and I

Me and my handsome husband. He had a surprise 30th for me. It was a cocktail party. It was the best birthday. Our good friends Micah and Jason and Amber and Mike came down from KC just for the event. I was sooooo excited!!

Us and the Ackers at my surprise 30th Birthday party

Annie in all her cuteness

Looks like she is waving at the camera

Enjoy the pictures. We are super busy as always. School is getting ready to start and we seem to be running in a thousand directions everyday. Hopefully it will slow down a bit soon!!

Proud Mommy Moments

2009-07-15T20:15:00.000-07:00

BELLA IN HER STANDER. DOESN'T SHE LOOK LIKE A BIG GIRL?

ISABELLA PLAYING ON THE GROUND ON THE 4TH. IT WAS THE FIRST TIME SHE EVER GOT ANY DIRT ON HER. I FREAKED!!

MY AUNT JUDY WITH ANNIE

THE GIRLS AND I AT THE ZOO IN INDEPENDENCE

ABBY AND MADDY ALWAYS WILLING TO POSE TO PICTURES

THE GIRLS AT THE PLAY PARK

SORRY A SIDEWAYS PHOTO ;)

MADISON FEEDING THE DUCKS

THE GIRLS AND I VISITED A LOCAL ORCHARD AND PICKED OUR OWN BLACKBERRIES. IT WAS SO MUCH FUN. THE GIRLS HAD A BLAST

I LOVE THIS PICTURE OF MADISON PICKING BERRIES

ABBY IS PROUD OF HER HARVEST

ABBY AND MADDY WERE SUCH GOOD LITTLE BLACKBERRY PICKERS

LOOK AT ALL OF THOSE BLACKBERRIES. I PUT UP 8 GALLONS!!

Bella continues to wean off the vent. We can now take her into stores while off the vent, we went out to eat and she stayed off the vent!! It is amazing how much easier it is to get around without the vent. I am just so proud of her. And as always she is just as happy as can be. She is such a blessing in our lives!!

Annie is growing like a weed. She smiles and coos all of the time. She even did a little giggle the other day. Well, it was more like a coo with a hop!! She is just so precious :)

Abby and Maddy are growing up so fast. Maddy will start her second year of pre-school and Abby will be in the 2nd grade. I can't believe how much they have grown this summer.

10 more days until my 30th birthday!! WOW. I can't believe I will be celebrating my 30th and that I am the mother of 4 beautiful girls and so lucky to have such a wonderful husband whom I adore. I think my 30's are going to be awesome!!

PICTURES!!

2009-07-05T08:27:00.000-07:00

MISS ANNIE
ABBY WAS TIRED OF ME TAKING HER PICTURE BY THIS POINT!!

ANNIE WITH HER COUSIN MOLLY AND MOLLY'S MOMMY MANDY

BELLA LOOKING UP AND SMILING AT SOMETHING.

MADDY DOESN'T LOOK HAPPY TO BE TAKING A PICTURE WITH HER MOMMY
ANNIE WITH HER GREAT UNCLE RONNIE

"HEY SIS"

MADDY STRIKING A POSE

ANNIE WITH HER COUSIN JARIKAH

MADDY AND ABBY SPENT MOST OF THE 4TH IN UNCLE STEVE AND AUNT SHELLY'S POOL. THEY HAD A BLAST

MATT PLAYING GAMES WITH THE BOYS

LOOK AT THAT SWEET FACE

ANNIE WITH AUNT STEPHANIE

MMMM, THESE FINGERS ARE GOOD!!

MY BEAUTIFUL BABIES

SILLY GIRLS

MADDY WITH MY SIS AND I

BELLA WATCHING THE FIREWORKS

ANNIE WITH HER COUSIN CHELSEA

MADDY AND ABBY GETTING READY TO WATCH THE FIREWORKS IN OSWEGO

UPDATES: ANNIE IS ABOUT 10# ALREADY. I CAN'T BELIEVE HOW FAST SHE IS GROWING. SHE IS ALREADY SMILING AND COOING SOME. SHE TURNED 7 WEEKS LAST FRIDAY!!

ISABELLA IS DOING GREAT. IN FACT SHE IS DOING BETTER THAN SHE EVER HAS. SHE IS OFF THE VENT FOR MOST OF THE DAY. I FEEL LIKE WE ARE FINALLY STARTING TO GET SOMEWHERE WITH THE WEANING PROCESS. SHE GOT A STANDER THE OTHER DAY FROM EQUIPMENT EXCHANGE. IT IS THIS MASSIVE PIECE OF EQUIPMENT THAT HOLDS HER IN A STANDING POSITION. IT HAS A TRAY ON THE FRONT SO SHE CAN PLAY WITH HER TOYS. WE HAVE TO TAKE IT TO PHYSICAL THERAPY ON MONDAY SO THEY CAN SIZE IT TO HER. I CAN'T WAIT TO START USING IT. IT WILL BE GREAT TO STRENGTHEN HER LEG MUSCLES.

ISABELLA LOVED THE FIREWORKS. SHE WOULD JUMP A LITTLE WITH THE BIG BOOMS, BUT FOR THE MOST PART SHE JUST LOOKED UP AT THEM IN AWE.

I HOPE EVERYONE HAD A HAPPY AND SAFE 4TH!!

2009-06-20T08:24:00.000-07:00

We spent a few days at Children's Mercy this week for appointments and Bella's bronchoscopy. We were originally suppose to stay one night in the PICU after the bronchoscopy, but Bella did so great that they just let us go home. Everything with the bronch looked good. They cut out some granuloma tissue in her airway. She also gained 2 1/2 pounds in the last 6 weeks. She is now up to 25#.

Bella all ready to go back to the OR

Lounging in the CMH wagon between appointments

Bella and Annie hanging out at the Ronald McDonald house

Sisterly Love

Busy, Busy

2009-06-03T11:21:00.000-07:00

Annie with Aunt Stephanie at Katy Days
Annie with Great Grandma Gudde

She is so sweet!!

Abby and Maddy at the petting zoo at Katy Days

Isabella enjoying herself at Katy Days

Annie is doing great. She nurses ALL of the time. She already sleeps for 5 hrs at night. I can't believe how busy I am with these girls. Abby and Maddy have been a big help. Bella is also doing great. We leave for KC in a few weeks for an EEG and a bronchoscope. Bella will have to stay one night in the PICU after her bronch.

Well enjoy the pics. Hopefully I will start finding more time to get on here. Not only have I not had time to blog, I also have not had time to read others blogs. I feel so out of touch!!

Life at the Gudde House

2009-05-21T15:28:00.000-07:00

Bella giving Annie kisses. It was so sweet

Sorry everyone. I have been very busy with my 4 girls. As you all know, Annie is here. She was born Friday morning at 8:19 a.m. She was 7.6# and 20.5 inches long. She is perfect in every way. I went in Friday morning at around 2:00 a.m. I was at a 5 when I got there. My labor was progressing fairly quick. My Dr. convinced me that I should get an epidural. So in a moment of weakness, I agreed. I didn't however get my epidural until I was at an 8. The epidural ended up stalling my labor for a little while. I stayed at a 9 for 3 hours. Then finally it was time. I pushed once, yes just once and she was here.

She is so wonderful. She nurses very, very well. She is going to pork up quickly. Her Dr. said she is perfect. He is the Dr. that found Bella's heart murmur. He listened to Annie for a very long time on three different occasions. No murmurs!!!!!

So we came home Saturday afternoon and we have just been enjoying life.

The Newest Gudde

2009-05-15T18:40:00.000-07:00

Thank you Megan for giving me and this world yet another beautiful baby girl, Matt

2009-05-15T09:24:00.000-07:00

Here's Annie!! Look at those chubby cheeks!

Annie's Here!

2009-05-15T08:55:00.000-07:00

Aunt Eenie posting, so bear with me....

Annie arrived at 8:19 this morning!

7lbs 6oz 20 1/2 inches long

Annie and Megan are doing great!

Will post pictures soon!

Headed to the hospital

2009-05-14T23:30:00.000-07:00

I will have someone update as soon as I can.
I can't believe she is almost here!!

Any Time

2009-05-14T09:32:00.001-07:00

I just got back from the Dr. I am dilated to a 2. He said go home, eat a snack and take a nap. He thought I would go at any time. Will it be today?? I am having contractions. They do seem to be getting stronger and closer together. If for some reason my labor is stalled and I don't progress on my own, he will induce me next Thursday. So at the very most I only have to wait 7 more days. So I am going to lay down and try to rest a little. I will keep everyone posted and let you know if we head to the hospital in a little bit!!!

Daydreaming

2009-05-12T20:49:00.000-07:00

As the title says, I am daydreaming. I find myself in constant thought about the baby coming. I can't wait to meet her and hold her and kiss her. The last few days are the hardest to wait out. So much anticipation!! I have her room all ready and her clothes neatly hung in the closet. Our bag is packed and we are ready to go. Now we are just waiting on our little girl to arrive. If I don't go into labor on my own, they are going to induce the 25th or 26th. I go back to the Dr. Thursday. We will see if there is any change. As of last week, I was not showing any signs of labor. On another note, they think she is going to be a big baby. She feels big to me. We will see. Also I am going to try to do this with no epidural. I have only had the epidural with Abby and I just remember feeling so drugged and groggy. With Madison and Bella once the pain of labor and delivery was gone, I felt great. So I am trying to mentally prepare myself. However, if at any point (hopefully before it's too late) that I feel the need for one, I will ask.

So Baby girl feel free to come out at any time.

Also

Happy 7th Birthday Abby!! We love you.

Birthday Party Fun for Abby and Maddy

2009-05-02T17:54:00.000-07:00

Bella playing with her cousin Haydn. They just loved on each other, it was so sweet.
"Spongebob you are going down!!"

Sarah gives it a good whack

Maddy

Abby

A Wii from Mommy and Daddy. They were so excited. And yes that is my belly poking into the picture.

Abby and Maddy playing the boxing game on the Wii. They loved it. Please disregard all of the B-day party trash on the floor in the background :)

Bella had enough party time. She was sacked out

Sisterly love

Maddy Sue

HAPPY 4TH BIRTHDAY MADDY SUE!!!!

2009-05-01T05:10:00.000-07:00

Misc. Updates

2009-04-27T08:22:00.000-07:00

Last week we took Bella to KC for her regular appointment. While there, we also saw the neurologist. It appears that she is having seizures. They dx her with partial seizures and have started her on seizure meds. They did not seem too concerned. She does not loose consciousness when having the seizures and she does not stop breathing. She will have an EEG in June. She is also scheduled to have a brochioscope in June. She will have to have anaesthesia for this. Which means, she will have to stay one night in the PICU. The EEG is scheduled for June 15th and the Bronch is on June 16th. After neurology, we saw Dr. Gratny. She wants Bella to work on being off the vent for 11 hours a day!! She changed some medications to help dry up her secretions. With less sinus drainage, she should be able to wean a lot quicker.
Matt has been back to work for two full weeks now. We are so thankful for that. I was starting to get a little worried that they were never going to call him back.
Abby has started her T-ball season and both girls are getting very anxious about getting out of school and starting summer vacation. Maddy will be 4 on Friday. I can't believe it. Then Abby will be 7 on the 13th. I am having a party for them this weekend. I thought I better hurry up and squeeze a party in before the baby gets here.
As for the baby, I am SO READY!!!! I am miserable. The baby has dropped a bunch and I seriously can barely walk. It hurts so bad. I think it is because it is my 4th baby and those pelvic muscles just are not what they used to be :) My Dr. did say that he thought the baby was pretty big.
As for the new addition, it has been really nice to be a little more spread out. We still have a little detail work to do, but all in all it is done and we are moved in.

Pictures, Pictures, Pictures!!!

2009-04-20T16:21:00.000-07:00

Bella and Abby going down the slide at the park. I think the sun was in her eyes.
Maddy hiding from her Mommy

Abby

The girls helping me plant flowers

Madison made a dress out of bubble wrap.

Bella doesn't even realize that the Easter Bunny came for a visit

Maddy and her basket. She drew cat whiskers all over face.

Abby and her Easter Basket

This was last week. Believe it or not, I am bigger than this now!!

Getting Closer!!

2009-04-07T04:19:00.000-07:00

We are getting closer to having the new addition done and we are getting closer to welcoming the new baby! I am getting really excited about the baby coming soon. 6 1/2 weeks until my due date :)The paint is on the walls and the carpet is down. Now all we need is trim and a few other details and we will be done!!

This is the hallway and it is a yellow color, but trust me, it is not THAT yellow!!! The room at the end is the safe room.

Maddy and Abby with their snowman. They were so proud.

My niece Sarah turned 8. I can't believe how fast these kids are growing up.

Bella's First Laugh

2009-03-18T20:02:00.000-07:00

Abby and Maddy in the Bobcat.
Look at the big girl standing up!!

This is Bella's first out loud laugh.

Baby News:
I went to the Dr. today. I am on every two week visits now. Everything looks fine. My hemoglobin was a little low so they put me on iron. I am starting to have some pretty painful Braxton Hicks. I can't believe how close I am. I am getting so excited. We have two tentative names picked out now. I think I will wait to share them when she (or I guess it could still be a he) makes her/his grand arrival.

2009-03-10T11:21:00.000-07:00

Yesterday Matt and I took Isabella to KC for her clinic visits. We started the day off by getting up at 4:30 in the morning YUCK!! Bella had cardiology at 10:00. Her echo looked great. They released her for 4 months!! She has NEVER been released for that long. I think the doctor saw the shock on my face because he was like, really Megan she is okay and does not need to be seen. I am so excited about this news. Next we went over to surgery clinic to get her bard button (g-tube) replaced. The bulb of the g-tube ended up breaking off when they were trying to remove it so now it is floating around in her stomach. Hopefully she will poop it out soon. Next we saw the vent Dr. While there, ENT stuck a little camera down her trach to make sure everything looked good. She said her vocal cords are moving nicely and that everything looked great. They suggested starting her on the Passy Muir valve. This goes on the end of her trach and it lets her breath in through her trach but makes her breath out through her nose and mouth. It allows her to be able to make noise out of her mouth. Matt and I got to finally hear her laugh out of her mouth last night. Talk about super precious moment. I will video it and get it on here really soon. Her vent Dr. was also very excited about Isabella's progress.
We also saw a physical therapist yesterday that evaluates patients for equipment. She is helping us get set up with a stander. I don't really know how to explain what that is, but it will let her put weight through her legs and there is a tray so she can play.
Okay, so that is about it for our KC trip. Very good news all around!!!
Isabella is doing great. She was off the vent for 4 1/2 hours this morning already.
Sorry for not posting much lately. I just haven't really been in the mood. I will try to do better from now on. :)
Pictures and Videos coming soon!!!!!!!!

Big Girl Bed

2009-02-25T13:28:00.000-08:00

Bella with Aunt Erin
Going outside to play

The new furniture

Bella in her new big girl bed

So Matt and I went bed shopping the other day for the girls. We bought Isabella a new twin bed. She loves it. While at the furniture store, I spotted some furniture that I fell in love with. Matt and I have NEVER in our almost 8 years of marriage bought new furniture. I thought it was about time!!

On another note, Isabella ate Chocolate pudding at therapy this week. She loved it. She was playing in it and rubbing it all over her face. It was so funny!!! Too bad I did not have my camera with me. :(

Everyone here is doing great. Not too much to report. I only have 12 1/2 weeks left!!

Finally Some Pictures

2009-02-19T20:44:00.001-08:00

Silly Maddy
Bella cracking up because she sees I have the camera and for some reason that is really funny to her at the moment.

At Physical Therapy playing with a switch toy.

Abby with her Valentine box at her class party

Bella playing with one of her favorite toys

Lots of Nothing

2009-02-16T10:17:00.000-08:00

Mostly over the last week, we have been dealing with sick kids. Abby and Maddy have both been sick. Abby was sick all weekend and is still sick today. We are getting ready to go to the Dr. She has a massive ear infection. Knock on wood, Bella has not been sick. In fact she is doing fabulous. She is happy, active and impressing me everyday.
Matt's still on layoff but the new addition is coming along.
Sorry for no pics lately, but I have just not been that camera happy. I just feel blah all of the time. I still have 13 1/2 weeks left and I am already miserable. It feels like my pelvic bones are being stretched apart and I can hardly lift my legs to get my pants on. I really don't know why I am so sore. You can now see the baby kicking and punching from the outside. I think it is so fun to try and figure out which part is sticking out!!
Okay, so I am going to go get my camera right now and snap some photos!!

Layoff

2009-02-03T19:40:00.000-08:00

So we just found out that Matt will be laid off after this week. We are completely clueless as to how long this layoff will last. It all depends on Obama's plan and the economy. All I can say is that I am thankful he was able to hang on as long as he has. Some of the guys that work there have been out of a job since Oct or Nov. Also for every week he has been able to hang on, the more he will get with unemployment. Another good point, he will have lots more time to finish the new addition in time for the baby to get here. Oh, and we get to keep our insurance. So I am not going to freak out yet. I am just going to take this time with my husband and kids as a time to grow and love!!

No Abnormalities

2009-02-02T13:54:00.001-08:00

I was suppose to go to the OBGYN last week, but they closed their office due to the icy weather. So I called to get a new appointment and while on the phone I asked if they had my sono results. She said the sono results read no birth abnormalities noted!! She also said don't always trust the techs on the sex of the baby. I did however already buy material to make the baby's quilt and it is not very boyish. Matt may be making a mad dash to the store for boys clothes when the baby gets here.
Isabella is doing fabulous. She is off the vent a good portion of the day. She stands with assistance for short periods and does really well this that. We are still working on sitting. She needs very little support to sit. I keep thinking that any day now she will be able to sit on her own. She does a pretty good job of mimicking sounds.
I will have pictures soon, PROMISE!!

National Heart Month

2009-02-01T08:22:00.000-08:00

What is a Congenital Heart Defect (CHD)?
CHD is an anomaly of the heart that is present at birth.
CHD’s cause one or more portions of the heart to develop abnormally.
At least 35 distinct forms recognized.(There is no known cause for CHD, although genetics is the number one suspect)
CHD is the # 1 birth defect and is the leading cause of birth-defect related deaths…(While it is the most common birth defect, it is the least publicized.)
CHD strikes children without regard to economic level, ethnic origin, sex, geographic location or religious beliefs.
40,000 infants are born with CHD each year in the U.S.(Still, newborns are not screened for CHD’s.)
Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly, too many are not diagnosed until after death.
Undiagnosed CHD’s and Childhood Onset Heart Disease cause many cases of Sudden Cardiac Death in young athletes.(Despite these statistics, teen-aged athletes are not routinely screened for CHD’s.)
There are 1.2 million children and adults with CHD alive today(CHD affects not only patients, but also entire families.) www.chdawareness.org

February is National Heart Month. The primary focus is always on Heart Disease in Adults. Congenital Heart Defects are the least researched and focused on. I pray that will change!!

Happy Birthday Angel Ava

2009-01-31T17:53:00.000-08:00

Ava Rae Boeckman 1/31/08-5/7/08

2009-01-26T10:44:00.000-08:00

So, it doesn't seem like there is enough time for me to get on here and post. Sorry for being such a slacker!! Bella is doing great. She is continuing off the vent 4-6 hours a day. Sometimes it is more, depending on how much snot we have to deal with. She is able to bear weight on her legs as long as you support her trunk. She spends lots of time playing with her toys. She scoots all over the place. The other day she scooted herself until she was completely up under the ottoman. Everything and everyone is just hilarious to her. She is always smiling and laughing. She can sure turn a bad mood into a good mood really quick with her presence. She is such a special little girl.
The house is coming along. I am hoping and praying it is done before the baby gets here. We are going Friday to pick out carpet and paint.
Matt has so far been able to hold onto his job, but it looks like it won't be for much longer. He as a meeting Wed. They just don't have the work right now. They build stuff like bridge overhangs and other road things??? ( I'm Not really sure what they do!!) Anyways they have pending orders but no real orders. All the pending orders are if Obama gives businesses the stimulus package. So we will see. It is in God's hands and we will deal with whatever comes our way.
I am so excited about the baby!!! I feel her kicking and swimming around in there all the time. She is quite active. My sister and Matt's sister Steph have both also got to feel her kick. I think she is going to be a big baby. I am already about the size I was at 9mo with Bella. We still do not have a name picked out. In fact we probably won't name her until she gets here. Maddy wants to name her coleslaw. Abby wants to name her Sella (is that really a name?)
The batteries on my camera are dead so I need to recharge and then I will post some pics on here.

HAPPY BIRTHDAY SWEET ANGEL GABI

2009-01-12T20:22:00.000-08:00

YOU WILL FOREVER BE IN OUR HEARTS!!!

WE LOVE YOU GABI

We are starting some serious weaning off the vent

2009-01-08T14:56:00.000-08:00

Isabella had an appointment in KC yesterday. The Dr. was so impressed with her, as always :) She is setting Isabella up with a humidifier mask to go over her trach when she is off the vent. This will help her wean much easier. The only thing holding her back from being off the vent is the fact that her secretions get thick when off the vent and she gets to coughing so much. This humidification system should help. We are now working on a goal of up to 12 hours a day. That means only needed ventilated at night. Her Dr. said she isn't really using the vent because she is overriding every breath so to speak. So basically in layman's terms, Isabella is ready to come off the vent at a very proactive rate!!!!!!! I think there is a good chance that she will only be on the vent at night by the time the baby gets here. Wouldn't that be great!!!
On another note, Isabella is not gaining weight as fast as they would like. We are increasing her formula volume to hopefully correct this problem.
We are meeting with PT at CMH in March so they can fit her with a stander (helps her bare weight through her legs) and a trunk vest (supports her trunk area to help her sit). Dr. Gratny really feels that the only reason Bella is not sitting on her own is because the upper muscles of her trunk are not quite as strong as they should be. This is a result from her hypoxic event (when she suffered the brain damage) She said she may or may not regain strength there. But the vest will help support her so she can sit up. All of her other muscles needed for sitting are nice and strong. She is ready, she just needs a little help.
So all in all it was a good day with lots of good news. We were released for 8 weeks, so that in itself says something!!

Some Updates

2009-01-04T17:28:00.001-08:00

I am working on making letters for the girl's rooms to go on their walls above their beds. This one is Bella's. I thought it turned out pretty cute. So these are going to be the colors used in Bella and the baby's room. I am getting ready to start on their quilts for their beds.
So in case everyone forgot, yes we are still working on our new addition. It is coming along slowly but that is because Matt is doing it all, plus he works full time on night shift. But we have made lots of progress since I last posted pics. This is actually the hallway. I took these yesterday, but as of today, there are closets all down this wall. Also at the end of the hall you can see the entrance to our safe room. Then of course there is the back door that leads to my GIANT back porch!!

In this picture, I am standing in Bella's room facing mine and Matt's room. We have a half wall between the rooms so we are separated but not totally separated. The part of the wall you see with the big rectangle is the only thing that separates our rooms. The big rectangle is actually where are big fish tank is going. It is built right into the wall, and you will be able to see it from both rooms. Pretty cool, huh?

This is Bella and Baby's room. This picture is their closet and the place that is going to be the window seat. Matt is building flip top lids on them so we can use them as extra storage. Our new room will also have a window seat. Eventually these will be the kids rooms (when Bella and the baby get older.) So for now, Abby and Maddy are actually going to get the Master bedroom.

I can't wait until we are done!!!! I am ready to start decorating

On another note, we took Bella to cardiology on Friday. They did an echo. Everything looks great. We are now just about one year post op from open heart #2 and nothing has changed (which is good). Her homograft is leaking very minimally (they all leak some). And her aortic valve is not leaking anymore than it ever has. Her cardiologist was quite happy with everything. He said she is starting to wean herself off of her meds (she gets bigger but her doses do not) She is up to 22 1/2 pounds now. We go to KC on Wednesday for her vent clinic.

I have now hit the half way mark in my pregnancy. We are no closer to picking out a name. I am still not totally convinced this is a little girl. I just felt so sure it was a boy. So I guess we won't know for another 20 weeks or so. I have not gotten any results back on the sono from the radiologist yet. I am assuming all is okay. I don't think the tech saw anything out of the ordinary. She did Bella's first echo, so I know how she acts when she sees something that is not quite right.

The kids go back to school tomorrow and let me say I am VERY happy about this. It has been over two weeks since I have had any "me" time. I am looking forward to getting my three hours a day back!!

Boy was I Wrong!!!!!

2008-12-31T11:30:00.000-08:00

Girl Parts!!! Is that how everyone else sees it?
Yep, as far as they could tell, it looks like we are having baby girl #4. I was so shocked. I was just sure they would say it was a boy!!! Oh well, I am still happy either way. She was so active during the sono that they had trouble getting any good pics of her girl parts. So we are not 100% but as you can see in the top pic, it looks pretty girly if you ask me!! She was touching her face with her knees and she was playing with her head with her hands. It was so precious. So now we need a girl name. I don't think she would appreciate it if we named her Jacob Allen!! We wouldn't know what to do with a little boy anyways, right?

We will know tomorrow!!

2008-12-30T09:50:00.000-08:00

Tomorrow at 11:00 a.m. we will finally know if this baby is a boy or a girl. I am so excited I can hardly contain myself. I just know it is a boy. I am going to be shocked if they say "it's a girl"
My appointment this morning went well. My blood pressure was really high the first two times they took it, but it came down significantly for the third try. The heart rate was 150. My measurements are right on with my due date. Oh and I lost three 1/2 pounds. I have no idea how I lose weight when I am pregnant, but I always do.
So that is it for now. Stay tuned for sono pics tomorrow afternoon.

Our little love bug has a name!!!!

2008-12-29T20:10:00.000-08:00

Well that is if the name fits the gender. I let Matt have full rein in the naming department this time. So tonight he told the kids and then they got to tell me. First off, it is a boys name. However, I just have a really good feeling that this baby is a boy. I can't explain it, but I just know. I will be really surprised if they tell me its a girl!! I go to the Dr. in the morning and then I will get to schedule my sono. I am hoping they will let me schedule for this week. I am trying not to get my hopes up too much, but I am just so darn excited!!

So what is this mystery name you ask??????

JACOB ALLEN GUDDE

We had actually talked about the name Jacob back when I was pregnant with Abigail 7 years ago. Allen is Matt's Dad's middle name. So what do you think??? If it does turn out to be a girl, then we have NO CLUE. No girl names are coming to mind for either one of us.

Now I am going to leave you with some more Christmas photos.

Madison and Hayden at Matt's mom and dad's for Christmas.

Maddy and I

Madison and Abby with their 3 story doll house that Santa brought them

Here they are in the Hannah Montana tent that Abby got from her cousin Bailey

Bella hanging out with Grandma Gudde

Just some pictures

2008-12-26T08:43:00.000-08:00

Happy Birthday Bella Boo

2008-12-22T16:23:00.001-08:00

Tomorrow is the big day!! Bella turns 2!! I can't believe she is already two. It just doesn't seem possible. Friday night we celebrated her birthday with family. She wasn't feeling too great but she had a good time.

My lame attempt at making a giant cupcake

Bella sitting with Aunt Stephanie. Check out her cute little dress and the silver shoes that Aunt Steph gave her for her birthday.

Bella eating frosting off of her cake

After party snuggle time with her sisters. And no, I seriously can't keep clothes on Madison!!

I had to add this one just for fun so everyone could see just how long this girl's hair is.

Ummmm Again, I am sorry for being such a lazy blogger!!

2008-12-15T20:00:00.000-08:00

Isabella fell asleep in her high chair after eating her mashed potatoes
Bella hanging out with Abby and Maddy. By the way, that is cupcake on Maddy's face. Also this is the first time Bella has had a pacifier in ages. She loves it. She does not suck on it, she just chews on it!! We gave it to her because she kept chewing on her fingers.
4 Month Belly pic.
Abby and Maddy after Abby's Christmas program.

It has been CRAZY busy around here. I am working on getting everything ready for Bella's birthday party on Friday night. Then we are going up to KC on Saturday to deliver gifts to the PICU with Gifts of Gabi's Grace. By the way, thank you sooooo much to everyone who donated.

I go back to the Dr. on the 30th. We will then schedule my sono. I am guessing it will be the first week of January. I have dreamt for the last 4 nights that we are having a boy!!

Isabella has been working on recognizing body parts. We are working on nose, hair and mouth. She is trying really hard and when she gets it, she is so cute. She grins from ear to ear, like hey look at me!! We are still trucking right along with being off the vent. She has been ornery with her trach lately. She likes to pull on it so she can talk, well sometimes she pulls too hard and ends of pulling her entire trach out!! She has decanulated herself twice in the last week. She also loves to the take out her feeding tube and let her feeding run all over the place. She thinks it is so funny when you say "No, No Bella".

Matt continues to avoid the layoff!! I am so thankful. So other than being super busy (like all people this time of year) we are all doing great.

I would like to leave you with two videos that the girls prepared especially for all of our blogger viewers. MERRY CHRISTMAS and GOD BLESS!!

Funny!!

2008-12-10T11:44:00.001-08:00

Send your own ElfYourself eCards

What have we been up to????

2008-11-29T11:06:00.000-08:00

Okay, so I want to apologize for not posting much lately. It has been really busy around here. Matt has not gotten any word on layoff yet. We are crossing our fingers that he does not get laid off. He took a job on a different shift for more pay. He is now working the midnight shift. He is still working hard on the new addition. It is coming right along. It has been kind of a slow process. Matt has been working on it as much as he can and then our brother-in-law Dan comes to help when he can. I really need to take some updated pics to put on here.
Isabella is doing great. She as always continues to amaze me each and everyday. She is just getting so big. She is so active these days and has really been trying to figure out how to go!! She is off the vent two hours at a time. She is getting closer and closer to being able to be off during the day. She babbles constantly and tries to mimic the cadence of voices. I am working on birthday party plans. I can't believe she will be two in less than one month!! Her cake is going to be a giant cupcake. I ordered the cake pan for it and I am really excited to try it out. I think it is going to be a cute party. She will actually be able to eat some of her cake this year.
Matt and I did the black Friday shopping yesterday. What a mad house. We bought a new computer so I don't have any of my photos on it right now. I really need to get with it and post some pics already!!
I hope everyone had a great Thanksgiving.

Good Check-Up and Belly Pic

2008-11-12T16:46:00.000-08:00

Bella had a check-up today. They were impressed as always with her progress developmentally. They want us to continue to wean the vent. They would really like to see her off the vent all day and only needing the vent at night. They also decided she has allergy issues so they put her on Zyrtec. With a lot less snot, she should be able to come off the vent a lot more. I really think the Zyrtec will help us wean more quickly. Bella's new trick is pulling on her trach so she can let more air flow. This allows her to be able to make more noise around her trach. When she wants to jabber, she just starts pulling on her trach. It is so cute. Good thing it is secure or she would be pulling the whole thing out!!

Okay, I know what you are thinking, good golly she is only 3 months!!! Well, it is baby #4 and I have heard that you show a lot more a lot sooner with each baby. I popped out really quick like this with Bella also.

Sorry for the huge delay in posting!!

2008-11-10T15:40:00.000-08:00

I guess I just have not been in the mood to blog. So here is a recap of the last week and 1/2.
1. Bella has had some kind of stomach virus and did nothing but throw up for 4 days. She is finally feeling better today. She has (knock on wood) kept everything down today. When she is not sick, she is staying off the vent for 6 hours total in one day. She is starting to really interact with her toys now. I think a lot of it is the fact that she is seeing so much better. She is also getting more strength. She is getting soooo close to being able to sit on her own and she is still trying really hard to crawl.
2. I went to the Dr. last Friday. We got to hear the baby's heart beat. I am seriously as big as a house!! I look more like seven months pregnant than three months pregnant. I will post pics soon, I promise!!
3. Also Gifts of Gabi's Grace and us at Miracles Happen are starting to prepare for Santa's Little Helpers again this year. It was a huge success last year and we are hoping for it to be a huge success again this year. So we are asking for your help. We have not set a date yet, but sometime in December we will deliver the gifts to the PICU at Children's Mercy. Some of the stuff we had last year was: coloring books, crayons, jewelry, movies tickets, McDonald tickets, books, and so much more. Ages in the PICU range from infant to 18. So please if let me know if you want to help in anyway. e-mail me at megangudde@hotmail.com or you can donate money at www.giftsofgabisgrace.org

Happy Halloween

2008-10-31T20:25:00.000-07:00

Two cutest pumpkins, Hayden and Bella
Sione and Maddy

Maddy (Dorothy) Sione (Red Power Ranger) Sarah (Maiden Princess) Bella (Pumpkin) Abby (Corpse Bride) and Katie (Tinker Bell)

Hope Everyone had a safe and Happy Halloween.

2008-10-22T12:37:00.000-07:00

Today Bella had a meeting with CCVI. They did a Teller Test on her to see what her vision is right now. They thought she was around 22/60. I guess this means she is nearsighted but sees fairly well up close.
As I mentioned in the last post, the Dr. put me on Zofran to help with the nausea and vomiting. It helped a little but I am now back to unable to keep ANYTHING down. I am sipping on Gatorade in hopes of staying hydrated. If I am not better in two days, then we will be looking at going into the hospital for IV fluids for two hours as needed to rehydrate me. I asked if I could do the fluids at home, but they did not seem to think so. I just don't know what else to do. I literally can't keep food down. So I am weak and tired all of the time. YUCK!!!! I just want to feel better.
On another note, Matt is probably going to get laid off from his job in the next few weeks. This company always does some type of layoff ever winter. This stinks. I thought of working a few shifts outside of the home, but I don't know if I will be able to being this sick. So I am now officially a Mary Kay Consultant. I am hoping I can help us out with a little extra money by doing this. So if anyone wants to do a Mary Kay party or would like to see our Fall Line just let me know. You can e-mail me with any questions at sgudde@marykay.com

Not Much Going on Here

2008-10-20T18:59:00.000-07:00

Baby News: I spent the weekend SICK!!!! I don't know if I have been that sick ever. I couldn't keep anything down and as the weekend progressed, I just got weaker and weaker. I have been still fighting this morning-all day sickness. It was better for a few days after the dr. put me on the motion sickness medicine and the unisom, but then it just slowly crept back until it was full blown sickness. Not kidding, I lost 6 pounds in like 30 hours. So first thing this morning I called the Dr. and now I am happy to say I am on Zofran. It is suppose the be the best anti-nausea pill. So far so good. I don't feel 100% yet but I don't feel on the verge of death anymore.

Bella is getting bigger all the time. I just can't believe my baby is just about to turn two!! I need to start working on birthday party ideas. If you know me and my parties, they are well, somewhat overboard!! So if I start now I should be ready by Dec 23 :) So does anyone have any good birthday party ideas for Bella? I am definitely open to suggestions.

I told you guys when I got pregnant about one of my best friends (Amber) and how she got pregnant first and that all of our kids are just weeks apart and yada yada. Well, Amber found out last Tuesday that she miscarried. I am so saddened for her and her husband. They are two great people that I love with all of my heart. I hate that this has happened to them. Please pray for Amber and her family.
Amber-I love you girl. You are the greatest. I am here for you always!!!

Worlds of Fun/Vacation Pics

2008-10-13T05:46:00.000-07:00

Spending quality time the Ackers!!

The girls enjoyed Camp Snoopy. Abby rode one big kid ride (Timber Wolf roller coaster) but after that she wanted nothing to do with anymore big kid rides!!
Bella on the train. I thought she would like it, but she cried the entire time. I don't think she liked all of the noise and the shaking.
Lunch Time with the family

Loving on Snoopy
Madison loving on Bella while we waited for Abby and Matt to ride the Timber Wolf.
Abby and Maddy on the Air Mail Ride

So we are home now and it is so good to be home. Isabella did not like being away from home for that long. She just wasn't herself all weekend. By the way, the medicine the Dr. gave me for the morning sickness is helping a lot. I feel 100% better!!

This is a super cute video of Maddy saying the Pledge of Allegiance. I didn't even know she knew it. Little Miss Smarty Pants!!

Baby Update

2008-10-10T11:37:00.000-07:00

I thought I would update everyone before we left town. I went to the Dr. this morning. He did not give me zophran, but he did give me a motion sickness pill and then put me on Unisom at night. The Unisom will help me sleep, but it will also help with the nausea. My Dr. is happy about everything thus far. I will try to scan the sono pics in after the weekend. We got to see the little baby heart beating!! It was so sweet.

Leaving for Vacation

2008-10-09T05:48:00.000-07:00

As soon as Abby gets out of school tomorrow, we are out of here!!! We are going to KC for the weekend. We are taking the kids to Worlds of Fun and I got them a hotel with an indoor swimming pool. I am bringing my lap top, so I will be posting lots of pics.
I go to the Dr. in the a.m. for another sono. I have no idea why he is doing another sono, but I keep dreaming that I am having twins. YIKES!! I am going to see if he can put me on Zophran (a high powered anti-nausea pill). I can't keep anything down. It is to the point that I am pretty sure I am getting dehydrated. I couldn't even lift my head yesterday and I kept spiking temps. With Abby and Maddy I had a rare condition known as Hyperemesis Gravidarum. It is severe vomiting in pregnancy that leads to dehydration. I had to be hospitalized several times with Abby and Maddy to get IV fluids because I was so dehydrated that I was going into labor. My Dr. never mentioned that there was a drug out there to help with this!! One of the causes of HG is high Progesterone levels. I remember my first appointment a few weeks ago when the Dr. made a big deal about how my progesterone levels were nice and high and that I have practically no chance of miscarriage and that I will most likely carry this baby to term. Hmmm, I wonder if that is what is causing me to be so sick. I guess I will find out more tomorrow.

Tagged

2008-10-05T06:59:00.001-07:00

Tag #1

My friend Amy Boeckman tagged me for a photo tag. You have to pick the photo from the fourth file and then the fourth photo. My photo ended up being a pic of Bella after her first open heart. She still has the steri strips on her chest so I bet she is like a week 1/2 post op here. I can't believe how tiny she looks!!

Tag #2

This tag comes from Amy at http://kadenboeckman.blogspot.com/. Here are the rules...

1. Link your tagger and list these rules on your blog.

2. Share seven facts about yourself on your blog--some random, some weird.

3. Tag seven people at the end of your post by leaving their names as well as links to their blogs.

About Myself

1. I consider my self to be a bit OCD. I love love love to clean. I sweep my hardwood floor like four times a day.

2. The books on my bookshelf are separated out by author and genre. (another OCD trait!!)

3. My favorite music is Christian Rock.

4. I love to read and I seriously read around 75 novels a year.

5. I love to bake. Up until I got pregnant and became so nauseous, I was baking about 3 batches of cookies a week. That is like 9 dozen cookies!!

6. My husband and I were set up by a friend. When we met we didn't waste anytime planning our lives together. We were engaged within 6 months and married at one year. We used to think we wanted 7 kids!! (We are not to far from that goal)

7. I rearrange my furniture ALL the time. My sister-in-law Steph works every other weekend, and she comes in and can never find anything because I have moved it ALL!!

I am tagging YOU!!

1. Micah- http://gabrielesheridan.blogspot.com/

2. Angela- http://mom2girlsgirlsgirls.blogspot.com/

3. Hollie- http://hollie-walkingthefineline.blogspot.com/

4. Angie- http://www.xanga.com/Ivys_Vine

5. Carrie- http://cbranam.blogspot.com/

6. Penny- http://sporefamily.blogspot.com/

7. Laura- http://lilliansheart.blogspot.com/

Off the Vent for 1 1/2 hours!!!!!!

2008-10-03T06:09:00.000-07:00

You read it right, Bella was off for 1 1/2 hours in one trial yesterday. Her o2 saturation never dropped below 95% and she didn't seem to be having any trouble breathing at all. The only reason I put her back on after an hour and a half, is because her heart rate was starting to creep up. This usually indicates stress on the body. GO BELLA GO!!!! That's right, they give my baby a challenge and she greets it head on. We are going to try to be off that long three to four times a day. At that rate, she will be off the vent during the day all together before we know it. That is the plan, to be off during the day and then just be on at night. Then eventually wean at night. And then wean her off the trach. I think I can actually see light at the end of the tunnel!! Another big excitement around our house, is that we are going to Worlds of Fun next weekend. I can't wait and the girls are even more excited. Everyday Maddy and Abby are asking how many more days until Worlds of Fun. Abby has been on the Worlds of Fun website and already decided what rides she wants to go on. Believe it or not, she is really wanting to ride a roller coaster. We are going with ALL of Matt's family. So his sister Steph (one of our nurses) will also be with us. It is going to be a great little family vacation. We have not had one of those since before Bella was born. It is suppose to be really nice that day, so I think Bella will really enjoy herself.
Well, everyone have a great Friday!!

Dr. Appointment

2008-10-01T18:11:00.000-07:00

We just got back from KC for Bella's check up. She had a good report!! Dr. Gratny would like to see Bella off the vent 1-2 hours at a time now. She really feels like we need to start pushing her a little harder. Bella showed off for everyone. She rolled onto her tummy and got her knees up like she was going to crawl. Everyone was really impressed. Dr. Gratny just can't seem to get over how much Isabella has improved. She says these kids never cease to amaze her. Bella has a new thing now that when she is bored or wants something, she fake cries. It is so stinkin cute!! She will not take a nap during the day now unless you snuggle her and rock her to sleep. She is just determined to stay awake and capture every moment.
As for me, I am sick!!! I have morning sickness from the time I wake up until the time I go to bed. It never subsides, I am just constantly nauseous. I am not actually throwing up, it just feels like I have 24/7 motion sickness. I am also VERY tired. I have to have at least one really long nap everyday and then I still am ready to go to bed by 8:00. I just hope the second trimester I have more energy and less nausea. It takes all I have everyday to keep my house clean and to cook meals for my family. I am not complaining in a bad way though, I am VERY VERY excited about this baby and I would suffer through anything for all of my children. This pregnancy is just so different from the other three which makes me wonder, is it a boy??? I don't know. I guess we will find out in December.

Matt's 30th Birthday Party

2008-09-28T08:18:00.000-07:00

Kevin and Jerri. I think he looks like Ducky from Pretty in Pink
Steph and I. Steph made her own dress!! I know she is awesome
Chels and IMatt getting ready to hit the Pinata
Jerri dancing to Thriller

Girls just wanna have fun!!
Nichole, Me, Steph and Jerri
A bunch of random people
Matt with his Mom and Dad and all of his brothers and sisters
Everyone doing the YMCA

We had a great time last night celebrating Matt's B-day. We had an 80's themed party. We had disco ball, lots of 80's music and some really awesome costumes. Thanks to everyone who came to celebrate with us. As you can see, we had the party in the unfinished new addition.

We have a Due Date

2008-09-26T13:30:00.000-07:00

I am 5 weeks 6 days pregnant so that would make the baby due May 24th. They drew lots of blood today and did a sono. I go back in two weeks for another sono because he will be able to see the baby better by then. That is pretty much it.

Happy Birthday Daddy

2008-09-25T06:42:00.000-07:00

Happy 30th!!! We love you. You are an amazing father and an amazing husband.

Pictures as Promised

2008-09-25T06:16:00.000-07:00

Maddy with her daddy watching Abby's soccer game
Abby and Sarah "warming up" for the game!!
Abby was goalie at this time. You might think that she is trying to stop a ball from getting in the goal, but she is actually trying to catch bugs!! Like I said before, she is really not in to sports. She told me she just wants to be a cheerleader.

Matt working hard. We have the new addition closed in. We are ready to shingle the roof and get started on the inside.

Dan helping us out with putting up trusses. I don't know what we would do without him. Thank you Dan!!

Madison the little dare devil!!

Madison loves to take naps all snuggled up to Bella. I don't really know what Bella thinks. She looks like she wants to say "Get this kid off of me!!"
Bella enjoying sissy's soccer game.

On a side note, the assisted technology form that had checked marked Bella as Profoundly MR was actually a mistake. They were suppose to check mark neurological problem but the MR section was checked by mistake. They said they will fix it!! Good to know.

Also I go to the Dr. tomorrow. So hopefully I will have a more definite due date after the appointment.

Irritated!!

2008-09-22T06:07:00.001-07:00

Just was my title says, I am extremely irritated right now!!! I will start with the first thing. Some people have said some things about Matt and I having another baby that have hurt my feelings a bit. I know that what they are saying is just our of concern for us because they care, but let me inform everyone of a few facts. The chances of Matt and I having another heart baby are VERY VERY VERY slim. We are excited about the baby. Yes, we are concerned to a certain degree, but we are not overly concerned. The entire time I was pregnant with Bella I felt like something was just not right. With this baby however, I feel nothing but peace. So please, I know some of you are concerned, but Matt and I are happy about this, please do not try to kill our joy with negative thoughts. We will cross all bridges as they come with the help of the Lord.
Okay, so enough with that. The second thing. Isabella's Birth to Three Program is trying to get her some assisted technology stuff like toys, kid cart, ect. Anyways, we got a form in the mail yesterday with all of her info on it and all of her diagnoses. We were suppose to look at the information and correct any mistakes. On the form (brace yourself for this) they checked that Isabella was Mentally Retarded-level-Profound!!!!!!! Excuse me????? Yes I realize my child has some level of mental disability. What that level is, we do not know at this time. Her brain injury is still continuing to heal. She has not peaked, she continues to improve everyday and figures more and more out everyday. I am so infuriated that someone would try to put that label on my child. It is no where in her medical record that she even has this diagnosis. Just this weekend, she started trying to crawl. She rolls over and gets her knees up and she even holds her head up while on her tummy. She is just about to get herself into the "rocking" position (you know how they do before they crawl). She cries when she is bored. She cries when she wants her mommy. She babbles all of the time around her trach. When I go to pick her up, I say "Up Isabella" and she raises her arms and pulls her shoulders forward because she knows I am going to pick her up. She scoots down to the bottom of her crib and kicks at her CD player until she gets it to turn on. She doesn't look blank. She is aware of her surroundings. Can anyone else feel my frustration here??? Okay, I am done venting. I know who my child is, and that is all that matters. By the way, Matt took a pen and crossed out that part of the form. He then sent it back as a revised edition!!
Isabella had an echo on Friday and as I suspected, everything looked great. We don't see cardiology again for three months.
I think I may be further along that I thought, because I am already starting to show. I think a lot of it is because this is my fourth baby and my stomach muscles are shot. I already had to drag out my maternity clothes!! I have never been wrong about the sex of my babies, and this time I am just certain it is a boy. So I guess we will know come about December when we get a sono. The morning sickness has already set in and I am sooooooo tired. Otherwise everything is great. Couldn't be happier!!
I will post some pics later. Sorry I have really been slacking!!

The Big News

2008-09-18T19:02:00.000-07:00

I debated about whether or not to post this but decided what the heck!!! Matt and I are expecting our 4th baby. We just found out today. I am actually in shock right now. The only reason I took a test, was because of an ongoing joke between a close friend and I. The thing is, if one of us is pregnant, then it is never long before the other becomes pregnant. Our oldest girls are 4 weeks apart. Our middle children are 6 months apart and then our youngest are 6 weeks apart. So anyways, she called me earlier this week to let me know that she was pregnant!! I laughed and thought, not this time, I am not going to be pregnant with you this time!!! Boy was I wrong. I decided to go ahead and take a test because I have been more tired than usual and I had to get up 4 times last night to pee. I think I am due around the end of May. So now I will have three May babies. Not to mention that our tags and taxes and our property taxes are all due in May. Talk about an expensive month!! Maddy and Abby said it better be a boy this time. I am nervous and scared and excited. I think I am freaking out!!!!!
Oh yeah, Bella goes to the cardiologist tomorrow. I am not worried. She is doing great. No signs of heart failure. I will report tomorrow when we get home to let you all know what the echo and the Dr. says.
God Bless

One Year Ago

2008-09-12T20:03:00.000-07:00

Septmeber 2007

On September 12, 2007, Matt and I brought Isabella home from CMH for the fifth time in her short 9 months of life. As you all know, this was the trip that was the most serious for Isabella. It was the trip that we almost lost her. She suffered brain damage, lost her hearing and her sight. They told us to take her home and see what happened. They said if she "crumps" again, then it would not be inappropriate to let her die at home. They said it would be hit and miss for her to make it to her first birthday, if she even survived that long. But look at her now!!!! Even though we went back to CMH for that short little stay to have our second open heart, I consider us to have been home for a year now. During that first nine months, she was never home for more than one month. One time we flew back in seven days, another time we flew back in 4 days. All in all, we were at CMH for 160+ days that first nine months. A lot has changed since those days of living at the Ronald McDonald house. Matt and I feel so fortunate that we get to be home as a family now with Isabella. She is the sweetest baby with the biggest smile. As her personality develops more and more I fall in love with her even more and more (I know I didn't think it was possible to love her any more than I already do!!!)

I can't believe that in just 3 1/2 months, my baby girl will be two!!!

First Time Down the Slide

2008-09-08T19:44:00.000-07:00

This evening was a lot of firsts for Bella, Abby and I. I, by myself, loaded up all three of my girls so I could take Abby to soccer practice. So now I know I can at least get Bella in and out of the car and manage to keep the others girls out of the road while I am doing it!! Really though, since Matt and I take Isabella everywhere with us, it was no big deal. Okay, so we took Abby to soccer practice. It was her first time to play soccer. I don't really think she was into it. Abby is really more of a drama queen than a sports star. Her and my niece Sarah decided to take a break in the middle of practice to go play on the swing sets!! All of the other kids were on the field playing while Sarah and Abby were swinging. Silly girls!!
For part of the practice, my sister and I walked down to the park with Maddy and Bella. Maddy of course wanted to stop and play. So I took Bella off her vent, and she got to go down the small slipper slide. I was holding onto her from the side the whole time, but she got to do it!! I forgot my camera, but my sister took some pics on her phone. We however don't know how to get them off of her phone. So I will have to take Bella back to the park and reenact her first slipper slide experience.

2008-09-05T16:24:00.000-07:00

I think I have mentioned a time or two the fact that we have chickens, right? Well we had twelve chickens. The one in the picture in the previous post with Maddy was named Boo. She was by far the favorite chicken. Well Wednesday a dog got into our chicken pen and killed all but one of our chickens :( It was awful. Boo was one of them that was killed. I know it sounds crazy, but Maddy and Abby treat the chickens just like any other pet. They loved their chickens. So obviously they were very sad about losing 11 of them. Today however, we went out to my mom's friend's farm to pick out new chickens. The girls had so much fun picking out their new chickens. They got two black ones, two white ones, a black one with white speckles, a red one and a white one with a yellow head. So along with our other surviving chicken, we are now back up to 8. The girls are so happy!! Bella also went to the farm with us. I took her off the vent so we could walk around and see the chickens. She loved looking at the horses, ducks and chickens. She smiled and giggled when the rooster would crow. She loved it so much, she stayed off the vent for 45 minutes!! So what can I say, I think we are all just a bunch of chicken lovers!!!
Okay, enough with the chickens....Bella is doing great. She is rolling over now without any problems. She is so happy all of the time. She is always smiling. It has been crazy busy around here with school and Matt working evenings. We are getting a lot done on the new addition. We have the walls and trusses up. Things are just moving right along!!

Picture Fun

2008-08-28T06:08:00.001-07:00

Madison giving her chicken a ride on her tricycle
Heading out for another day of preschool

Bella with CCVI (the team that helps with her visual impairment)

I would like to ask for prayers for Bella. She has not been feeling that great. It is nothing serious. She is however cutting 6 molars!! She is suffering from allergies like the rest of us. So in turn all of this makes her throw up....A LOT. She gets gagged on all of the extra secretions. She has been fussy and just not feeling great. Other than that, things are great here. Isabella saw CCVI yesterday (they come to the house once a month) and they brought her that mirror with the beads you see above. When she hits it, it vibrates and plays music. She really likes it a lot. Also you can see above how she is starting to really bring her hands together at midline. So all in all, we are making little baby steps in the right direction!!
Abby and Maddy are loving school. Abby had her first spelling test yesterday and she got a 100%!!

First Day of School and Remembering Angel Gabi

2008-08-20T19:01:00.001-07:00

Madison and Sione at preschool
I think she was blinking from the flash, but I was trying to get a pic of her piggies

Abby was so nervous this morning
Ready to go
Madison being really excited

Today we remember sweet, little Gabi Acker. Gabi touched our lives and will forever be in our hearts. Madison and Bella sported piggies today in honor of Gabi.

Abby started the first grade today and Madison started preschool. I think they both really enjoyed it. They said Madison cried a little bit because she missed her mommy. :( Isabella got to go with us to take both girls to school today. It was very quiet at my house today!! There are usually 6 kids and now we are down to 1. I think I could get used to my house being quiet once in awhile!!

Bella continues to do great. She is improving in strength everyday. I think she will be sitting on her own very soon. She tries so hard. I am very proud of how determined she is!!

2008-08-13T19:32:00.000-07:00

Today we went to KC to see Dr. Gratny (Isabella's vent Dr.) She had a really good check up. Dr. Gratny was again completely amazed at how well Isabella is doing and how far she has come. She said she could really tell that Isabella can see. She was just overall impressed. So impressed that we don't have to go back until October 1st!!
Not much exciting has been going on here. We are still going to therapy once a week. We are working on the new addition for our house. Isabella continues to grow and get stronger. She is so sweet and is always full of smiles and giggles.
My babies start school next Wednesday. Madison will be going to preschool three hours a day and Abby will start the first grade. So we have been doing a lot of shopping for school supplies and school clothes. The girls are excited.
Sorry for such a delay in posting. I just really have not felt like blogging lately. But I am now our of my rut and I am ready to start blogging again and posting pictures!!

County Fair

2008-08-01T16:58:00.000-07:00

We took Abby and Maddy to the Labette County Fair today (which is literally three blocks from our house). We walked around and saw all of the animals. The girls loved the pigs and horses. Then we bought 4 corn dogs and 2 drinks for a grand total of $19.00!!!! Yikes, Fair food is expensive.

On another note, a year ago today is when Isabella coded in the PICU. They did chest compressions and she snapped right out of it. It is hard to believe a year has passed since then. I thank God everyday for how far she has come. Physical therapy thinks there is a good chance she will be sitting independently in the next 3 or 4 months. I have noticed over the last few weeks that her vision seems to be improving more and more. She just acts like she can really see a lot better. I don't know how to explain it, I can just tell she is seeing something.

Weekend Getaway

2008-07-29T16:51:00.000-07:00

Amber and I at Margarita's
I don't know what he was laughing about!!
Mike and Amber
My girl Amber and I again. We've known each other since I was 15!!

Matt and I ventured off this last weekend for my birthday leaving the kids at home. My sister-in-law, who is one of our part time nurses, came to stay with Isabella and then her teenage daughter watched Abby and Maddy. We decided to go to Kansas City to see friends. We ate dinner with our good friends Mike and Amber Heavner. Then we headed over to Eudora for a surprise party for Jason Acker. We had a great time, but I missed the girls. I couldn't sleep without listening to Isabella's vent. It was the first time I had been away from her overnight excluding when she was in the hospital. She did great though. I think maybe again one of these days Matt and I will do it again!!

Pointing out the Miracles

2008-07-19T09:12:00.000-07:00

In less than one week, I am going to be 29!! I can't believe it. It is crazy how time flies. Last year on July 25th, my 28th birthday, we brought Isabella home with her new trach and vent. She was a happy, smiley little bundle of joy. We felt she was given a new lease on life. It was crazy having nurses in our home 24/7 but we needed the help. Then just 4 short day later, I was standing over my sweet baby girl bagging her and praying to God that he did not take her from me. As the ambulance arrived I felt my whole world crashing because I couldn't believe she was crashing on us again. Some of you may know that we couldn't get a flight out to Children's Mercy at the time. There was a bunch of storms and helicopters could not fly in the KC area. So we took a helicopter ride to Joplin. We waited in their ER until we could find a flight. Isabella lay in the ER with fright in her eyes. She was gasping for each breath even though her ventilator was on. She was in severe pulmonary hypertension. Her temp sky rocketed to 106 and her blood sugar bottomed out to 32. When the flight team arrived, Matt and I begged them to let us both ride with her to CMH. I still had hope but I really thought it would be the last time I saw her. When we arrived at CMH she was in DIC (when your blood will no longer coagulate) She was in shock and they assumed she was septic (infection through the entire body). That was July 31st. She cardiac arrested the next day and they did chest compressions. The doctors told us they were concerned about her brain function. They were pretty sure that all that had happened had caused my daughter to suffer brain damage. They told us she would probably live through this ordeal of crashing but they were not very confident that she would live long term. They really felt she would crash again and then not be able to bounce back. Then they did the MRI and confirmed her brain damage. They told us she was blind and deaf and that the Isabella we knew was gone and would never come back. She was never going to be the same.
So you ask, why am I reliving all of this for everyone to read?? Well it has been almost one year since that fateful night. Almost one year since Isabella was thought to have never been able to come back to us. I want everyone to see and understand the significance of the miracle we have witnessed over the last year. My baby can see!! My baby can hear!! My baby now smiles and laughs!! She knows who her mommy and daddy and sisters are!! She now says La and Ma and she rolls over and she does so many more things that they NEVER thought she would. We were told she would probably be in a vegetative state and never make another purposeful movement in her life. We were told she would NEVER regain her sight or hearing. We were told she would probably not make it to her first birthday and that we should just take her home and let her go peacefully. If that is not all a miracle of God then what is?? I praise God everyday for Isabella. She still has a long road and that road is very unknown and scary. Thank you to all of you who have prayed and continue to pray for us. The support we have had is unreal!! So thank you and God Bless you all.
I also want to take the time to remember two of the sweetest angels Heaven will ever know. Sweet Little Gabi Acker and Precious Ava Boeckman. I feel lucky and blessed to have known these precious little girls. They will be forever loved and forever missed.

Swimming with Mommy

2008-07-13T17:20:00.000-07:00

Today Isabella got to go swimming for the first time. She LOVED the water. She didn't get too wet because I kept her on the float the whole time. She stayed out for 20 minutes. It is amazing what she is able to go and do this summer opposed to last summer. We spent all day yesterday in Joplin school shopping for the girls. Isabella doesn't ever seem to mind a bit begin out and about. She goes with a smile on her face.

Something To Giggle About

2008-07-11T09:48:00.000-07:00

Bella has finally learned how to really laugh out loud. Yesterday was the first time, and we got it on video. She was laughing so hard that she was causing her vent to high pressure.

Another funny (but beware this is really gross) On the way home from KC I looked back at Madison in the back seat and saw her feet up in her face. I asked "Madison what are you doing?" Her reply "I am picking my nose with my big toe!" Now I think I have seen it all!!

A check up and an eye appointment

2008-07-09T18:38:00.000-07:00

Today Isabella went to the eye doctor. He was very encouraged that she is trying to see. He couldn't tell for sure just how much she is seeing, but he was sure was seeing something. Also she said she does not need glasses at this time. So as I had already suspected, her cortical visual impairment is healing. Remember the Doctors told us she would probably never see or hear again. Isn't God great!!!
Also we went to special care clinic (vent Dr.) She wants us to continue to wean her off the vent. She said Isabella really isn't on much support. She was again really impressed with how great our girl is doing. It is so good to go and be able to hear how great your baby is finally doing opposed to how poorly she is doing. I feel like the dark days are behind us. I give God all of the credit for how far he has brought Isabella this last year. I can't believe that on the 31st of this month it will be a year since Isabella suffered her brain damage. I look back at how she was when we first brought her home back last September to what she is now.

Happy 4th of July

2008-07-04T21:23:00.000-07:00

The family
Bella eating cake
My sis and I

Sweet Bella
Maddy
My three little patriotic princesses
All of the kids
Maddy and Sione

This was Bella's first 4th at home. Last year she was in the PICU on the 4th and missed the whole celebration. She loved the fireworks. She smiled with each bang!!

I can't believe all of that hair!

2008-07-01T20:26:00.000-07:00

Isabella now has enough hair for full pig tails. I can't believe how big she is getting. I had to clean all of her 12 month clothes out of her dresser. She is now wearing 18 months and some 24 months. She has started joining her hands together at mid line. I guess in the therapy world, this is a big step. We are going to KC next week for a check up. She is also going to get an eye exam.

So far I love my new job. It is nice to just get out of the house for a few hours. Matt started evenings on Monday so it is just the girls and I every evening. So I am really thankful for my three hours I get to get away at work.

It has been a busy week already with trying to get ready for the 4th of July. I love it!! Nothing beats BBQ and fireworks.

Not much more to tell everyone right now. If I don't post before then, everyone have a good and safe 4th.

Mommy is going to work

2008-06-26T11:59:00.001-07:00

Well sort of....I have been thinking about doing something to get me out of the house some. I didn't want to take a job at the hospital and work 12 hour shifts. I don't think I could be away from Bella for 12 hours at a time even if it was only like one day a week. I am not ready to take that big of a step yet. Then I thought about did I even want to work anywhere else as a nurse. I realized that if I got another job, I would not be doing it for the money. I am doing it for my sanity. So one of my best friends is the administrator of an assisted living. She has been wanting me to come be her Director of Nursing, but I just wasn't ready. So, today, she offered me the activity director job. It is only 3 hours a day and I pretty much pick my hours. She knows all about Bella and how there will be times that I can't be there. And best of all, I get to just hang out and do lots of fun activities with the residents. I am super excited. I think it is a step in the right direction for me. The facility is only like two minutes from my house and I won't ever be gone long enough to freak out about not being home.

In Memory of Chloe

2008-06-23T20:33:00.000-07:00

Matt opened the newspaper tonight and we were shocked to see the loss of little Chloe Robinson. She was born with TOF and just had her first open heart surgery on the 12th. She passed away on Saturday. She had been doing so well, that she didn't even need her first surgery until she was a year old. I just can't understand why this happens and it just breaks my heart. I have never personally met Chloe or her family. I was given her mothers name by a mutual contact and I phoned her just days before they left for CMH to have the surgery. She was in need of talking to other moms with heart babies. So please keep the Robinson/Johnson family in your prayers as they go through this difficult time.

I can't beleive she is a year and 1/2 old!!

2008-06-23T18:18:00.000-07:00

That's right, my baby is a year and 1/2 today. It just doesn't even seem possible. She continues to amaze me everyday. She is such a little super star!!

One Year Ago Today

2008-06-21T22:22:00.000-07:00

One year ago today Isabella got her trach and her G-tube. Wow, I can't believe it has been a year. I am so thankful for modern medicine. Without the trach and G-tube, Isabella never would have survived. And now they have allowed her to grow and become strong. Before we know it, we will be saying good-bye to the trach and the G-tube. Most of all, we praise God for all of the miracles we have witnessed in Isabella.

Cardiology report

2008-06-20T15:08:00.001-07:00

Isabella went to see Dr. Gallett today in Joplin. She had an echo done. Everything looked good. He said she doesn't need to come back for 3 months!! He was really impressed with how well she is doing. Her heart function looked fabulous. Praise God!! After the appointment we did some shopping (of course) and we are now home just lounging around. I got the girls some 4th of July attire. I am hoping to get them all dressed up and do some pictures soon. So be looking for those.

Just Because She Is So Darn Cute!!

2008-06-19T11:14:00.000-07:00

"This fist is good!"
Hayden and Bella hanging out at Grandma's

Happy Fathers Day

2008-06-15T14:34:00.000-07:00

To a wonderful husband and wonderful father, we love you!! Happy Fathers Day!! And a Happy Fathers Day to all you wonderful Dads out there.

Bella is on the move!!

2008-06-09T14:52:00.000-07:00

Today Madison decided to curl up with Isabella and take a nap. Aren't they cute??
So Isabella has decided to start moving all over the place. She loves being on her belly now. I am so proud of her for learning how to roll over. Last night while on her belly, she actually scooted forward using her arms and her legs. And when she is on her back, she scoots quite a bit. It will only be a short amount of time, and I think she will be crawling!! GO BELLA GO!! So lets just keep cheering her on because she is one determined girl.

Silly Girl!!

2008-06-05T04:45:00.000-07:00

Somehow, Isabella got her shirt up over her head during the night. It was so cute that I had to share it!!

Is that really my Bella girl???

2008-06-02T17:28:00.000-07:00

"Hey, look at my tongue."
Bella on the bouncy ball with her Physical Therapist, Julie
"Oh Julie, do you really have to do that to me every time?"
Julie and Mel working with Bella on.....standing!! Yeah that's right, my baby girl has her feet planted on the ground and is standing up with support. Not even one month ago did she even have a planter reflex, and now look at her. She is just so amazing!! Since she started therapy over in Pittsburg, she has been just progressing like crazy.
"I just love therapy!!!"

Head Growth=Brain Growth

2008-05-29T17:03:00.000-07:00

Yesterday, Isabella had her regular monthly appointment in Kansas City. We went over to Crown Center for lunch and ate with Micah, Gracie and sweet, little Kinsley. I got in as much snuggle time with Kinsley as I could before we had to head over to the hospital for our appointment. We actually saw Dr. Gratny this time. We have not gotten to see her since we came home from our second open heart. Let me tell you, Dr. Gratny was more than pleased with Isabella's progress. She just could not say enough good things about how Isabella is doing. Her head has grown quite a bit since her last visit. This is REALLY good news because since she suffered her brain injury, she has not had much head growth which means not much brain growth. She was also very pleased with her quickness at reaching some milestones over the last few months. She said her muscles have good tone which is something that indicates her brain is healing. Typically with brain injury, they are very rigid and sometimes even with meds it does not help. She got to watch as I picked up Isabella and Isabella turned into me and snuggled. She said that was a good sign. She said to be honest, she really was starting to worry that Isabella was not going to progress and that she was never going to have REAL purposeful interaction. She is now convinced that Isabella has the potential to keep moving forward. She said we were going a great job and to just keep doing what we are doing. They lowered her breathing rate down to 10 on her vent. She is now on the lowest settings. We are to be taking her off the vent several times a day and we are to try and keep her off as long as she can tolerate. So we are officially in the weaning process. She is doing so good that she does not have to go back for 6 weeks. So we will go back up right after the 4th of July and we will see Dr. Gratny and she will also go and get her eyes checked to see if she can "see" well enough for glasses. It depends on how much her cortical vision has healed. She needs glasses, but if her brain can't process an image then glasses are pointless. So we will see. I personally think her sight is getting better with each passing day. She is actually starting to respond to visual threat and she seems to focus better. So anyways, we will continue therapy weekly and she will go to see her cardiologist in Joplin next month for a follow-up echo. So good news all around. All I can really say is Praise God!!!

New Discovery

2008-05-25T17:56:00.001-07:00

We have been going to therapy once a week, and one thing they have been working with Bella on is perception of body parts. You and I know we have legs without even looking, but Bella doesn't quite get it. So we have been having her touch her legs and her toes. We have even been having her put her toes in her mouth. Well today, she actually held onto her foot and played with it. It was so cute!! She was like "hey where did this come from??"

She is cutting her molars right now and has not been a very happy baby. She has been doing better about rolling. She doesn't do it one motion. She either goes from back to side or from side to stomach. She is scooting on her back really well now also. She is trying so hard to sit up. If she is laying on her back with her head propped on a pillow, she will just about get herself sat up. You can tell she really wants to, she just doesn't quite have the strength yet. So she has the "want to" and in my eyes that is a big step. You can just tell she is wanting to go somewhere!! And I think she will....SOON!!

The Weekend

2008-05-19T11:32:00.000-07:00

Bella is getting to be such a big girl. I can't believe how much hair she has now. She is off the vent for 1 hour a day. She stayed at 100% spo2 on room air while off the vent yesterday. She just gets tired of breathing on her own because she needs to build up more muscles.
She had PT and speech therapy today. She swallowed for the speech therapist and showed lots of promise to be able to eat by mouth in the near future. PT is also very impressed with her. She was awake the whole time and she kept her head held up for all of her session. She did so good and I was just so proud of her!!
Her scars are starting to fade again. I think they look pretty good.

Abby at her first t-ball game of the season. She hit the ball really well. She was the last batter, so she had to run all of the bases (I guess that is how they do it in t-ball) Anyways, she was really confused!!
My little girl running.
Isn't she cute!!

So we are going to FINALLY pour the rest of our concrete tomorrow. So hopefully the building project is about to take off again. Keep your fingers crossed.

Poem

2008-05-16T08:35:00.000-07:00

I found this poem and thought I would share it. I am sure some of you have seen it. It really spoke to me and really explains how I feel practically everyday. Heart moms everywhere I am sure can relate.

The Day I Became a Heart Mother
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.
I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!
Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will accept our fate.
When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns her wings,
I run to my child's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she is here,
but my heart begs, "PLEASE let her stay"!
From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will she be alright?", to watching her reach out her hands.
With every smile my heart just melts,
despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to her beautiful heart).
God must have known how much I'd love her (Just as He loved her from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".
- Author Unknown

WELCOME BABY KINSLEY

2008-05-14T11:34:00.000-07:00

BEAUTIFUL BABY KINSLEY ARRIVED TODAY AT 12:20 P.M. CONGRATS TO MICAH AND JASON ON YOUR NEW ADDITION. SHE IS LOVELY. http://gabrielesheridan.blogspot.com

A Party Fit for a Couple of Rock Stars

2008-05-10T18:59:00.000-07:00

today we did the girls' b-day party. It was Hannah Montana. They had a great time. We did a BBQ along with cupcakes, cookies, pinata and lots of presents. It was fit for a rock star!! I spent lots of time and effort making the pinata, so I have to say I was a little sad when they beat it apart :( Oh well!! Also on another note, Bella is rolling from back to side and side to stomach. So well, she is rolling over!! She is all over the place scooting on her back. You can tell she just wants to go somewhere.

The Table. Yes I did it all myself!! (I have way to much time on my hands). Christina, I know you are seeing this and so proud of my cookies!!
More of the cookies and see my pinata!!
The birthday girls.
Maddy hitting at the pinata
Abby giving it a whack

Wow a princess tent!! Thanks Grandma!!

One of Bella for good measure

I don't know what she was so excited about.

Oh my a Hannah Montana Guitar!!

Okay, don't look but here comes the big gifts

Wow!! New bikes!!

Abby has already wrecked hers and skinned up her knee :(

Maddy. Matt insisted on putting horns on them. Thanks Honey!!

Heart Broken

2008-05-07T17:06:00.000-07:00

I can't believe it....Little Ava Rae Boeckman passed away this afternoon. We are so heart broken for Amy and Nate right now. She was a little fighter and a special little girl. I feel so lucky to have met and gotten to spend time with little Ava. You will be missed.
January 31, 2008-May 7, 2008
http://kadenboeckman.blogspot.com/

Birthday Parties, Garage Sales, Circus Fun and then a Car Wreck to Top the Week Off!!

2008-05-04T19:31:00.000-07:00

This is Bella and Nurse Becky on Monday at Children's Mercy. As you can see, Becky is very excited to see Bella!!
Micah getting to hold Bella for the first time. Micah has known Bella for just about one year now, but has never gotten to hold her.
Mimi Best came over to hand out birthday gifts and she got a chance to hold little Miss Bella Boo. Bella was off the vent at the this time. She is staying off for about 20-30 minutes two times a day.
My baby girl is three. I can't believe Maddy turned three on Thursday. She is getting so big. We took her and Abby to the circus that night. It was awful!! The kids liked it but Matt and I thought it was a bit of a joke.
Hayden giving Bella smooches. Hayden turned one, and we went to celebrate her birthday Friday night. She loves Bella!! Bella showed off for everyone and just talked and talked. She is started to make sounds of oooh, aaah and la la la.

So Saturday we had our garage sale. We did okay considering I marked everything REALLY cheap. We made $147.00 for Miracles Happen. Better than nothing.
Then this morning, my sister called me and she was crying. She and her new husband had been in a wreck after coming home from breakfast. My sister was driving and she came up on a really blocked intersection and they got T-boned by another car. The other car did a few flips but everyone was okay. Both vehicles were totalled. They took my sis by ambulance but her husband refused to go by ambulance. My parents and I met them in the ER. They are both okay just really banged up. Erin can't see because she lost her glasses in the wreck. She also lost her set of keys. Who knows what happened to all of that. Her husband had a dislocated shoulder. The sheriff deputy said they were really lucky!! So they are home resting. I don't know when Erin will be able to come back to work. So until then, it is just Bella and I. We will probably have to reschedule her therapy session this week because I can't take her by myself. I am just so thankful that they are okay!!!! LOVE YOU SIS, GET BETTER SOON!!!

We are finally going to pour concrete tomorrow!! And that is about it in our lives. Nothing too exciting, right? :)

Successful Trip

2008-04-28T19:36:00.000-07:00

First off I want to say how good it was to see three of my favorite people today!! Micah, Becky and Amy. I miss you girls so much and I was so happy you took time to spend with Bella and I. I so wish I could convince Matt to just move to KC!! Micah, you know we have to convince him. But anyways I love all three of you and I am glad we got to see you. And I also got to see sweet little Ava today. She was so precious. I just wanted to pick her up and cuddle her. So thank you Amy for letting me see your baby girl.
Now on to Miss Bella Boo. She had a fabulous check up. She cooed at the Dr. today. So everyone in special care was impressed. She is now to be weaned from the vent up to 1 hour two times a day as tolerated. They did in echo in cardiology and her heart looks great. They took her off one of her diuretics and also took her off the potassium. So we are headed back down the path of weaning the vent and the meds. We are also going to try out Peptimen Junior (big kid formula). So all good news. She got immunizations, so she is running a bit of a temp right now. She seems happy though, she is just laying her crib chattering away and watching her little light show.
I have pictures to post but I am way to lazy to upload them tonight. So I will be hopefully get that done tomorrow. The audiologist is coming to the house tomorrow to check Bella's hearing. I am sure it is fine. That's all for now!! I am going to bed. 6 hours of driving in one day is too much for me!!

Check Up Tomorrow

2008-04-27T20:28:00.000-07:00

Little Miss Bella Boo showing off that wonderful smile of hers!!
Me and my sis.
Sione and Madison. This was at Sione's birthday party. He turned 3 on Friday and Madison will be 3 this Thursday. My sister and I had them 6 days apart.
The birthday boy
Another of Sione and Maddy because they are just way too cute.

So it was a pretty good weekend. Not much to tell. Tomorrow Bella goes up to KC for her monthly appointment. She will go to cardiology for an echo also. It will be the first time I have taken her without Matt. Erin is going with me. I think we will be okay. I will post a report as soon as I can. I am sure she will have a good one though!!
And, tomorrow is Matt and I's 7 year wedding anniversary!!

2008-04-23T20:40:00.000-07:00

Make a slideshow - it's easy!

My friend Christina found this website Smilebox. It is great and it is free for making scrapbook pages and slideshows that you can post to your blog. Thought I would try it. Since she looked so cute in her sunglasses today, I thought I would do a slideshow about her new sunglasses. ENJOY!!

A Day Of Shopping Will Make Any Girl Smile

2008-04-23T14:53:00.000-07:00

All Smiles Yesterday
Today after Physical Therapy, we went shopping. Bella got a new pair of sunglasses. Is that not the cutest?? Oh and she also got this new dress. It is so fun to dress her up!!
Look at that toothy grin
"Yeah, I know I am cool!!"
"Okay mom, that is enough with the pictures!! I am done with these sunglasses!!"

Bella slept through her entire therapy session. As soon as it was over she opened her eyes and started looking around. I think she likes to "pretend" to be asleep to get out of doing any work!! We learned some new techniques with her. Again they feel very confident in her ability to rehabilitate. Her first goal is to turn from back to side. I am so proud of how much she has been accomplishing.
The new addition on the house is coming along slowly but we are making progress. Link over to my blog pics of our progress.
Also Ava is doing better. They did a heart cath yesterday and all went well, but please continue to keep her and her family in your prayers.

Bella's new self

2008-04-22T19:18:00.000-07:00

Over the last few weeks, I have begun to notice how much Bella has changed. What used to be a few smiles here and there has now turned into constant smiles, giggling and cooing. She is SO interactive. Her interactions are appropriate with what is going on around her. If you talk to her she smiles and mostly tries to "talk" back at you. She giggles and smiles every time her daddy claps his hands. She loves to be loved on and when you pick her up, she turns her body into yours in order to snuggle. I have tears as I post this, because she is doing all that many thought she never would. I can see daily changes and growths in her. She is so amazing. I think she is seeing better each day. She seems to be really focusing on my face more and watching my mouth as I talk like she is studying what I am saying. You know how babies do when they are trying to learn how to talk. I really think it is a matter of time before she says something other than ahhhh. Tomorrow we are heading to Pittsburg for physical therapy. I will let everyone know what they have to say and I will post pictures tomorrow. I am too lazy to go get my camera and upload pictures right now. Sorry!!

Busy Weekend

2008-04-20T19:48:00.000-07:00

Well Saturday, we spent most of the day marking garage sale stuff for our city wide garage sale. We are going to use all proceeds for Miracles Happen Ministries. Then about 5:00 p.m. Matt decided he wanted us to all load up and go to our favorite Mexican restaurant, Ernesto's. So for the first time since Bella has been on the vent, Matt and I took the girls out my ourselves. It wasn't as bad as I thought it would be. Abby and Maddy were well behaved and we are so used to getting Bella out anymore that it doesn't take as long as it used to. We went to eat and then to Wal-Mart. We did a little birthday shopping for Abby and Maddy and for Matt's Mom. Bella loved every minute of being out. She smiled and looked all around. You can tell she is getting used to going out more and is starting to really like it.
Then, today we went over to Matt's parents for his mom's birthday. So HAPPY BIRTHDAY MOM!!! We grilled out and had a great time. We came home and I mowed part of the yard and now everyone is in bed. Matt starts his new job in the morning so we have to get to bed earlier.

Little Ava Really Needs Our Prayers

2008-04-18T09:11:00.000-07:00

Ava continues to fight everyday and is in need of our prayers. She was finally extubated after getting her G-tube placement but was unable to stay extubated for long. She has gone into respiratory distress and had to be re-intubated. Now the Dr.'s have had the talk with Amy and Nate about possible tracheostomy and going home on the vent. As most of you know their little boy Kaden is also on the vent. Amy and Nate are amazingly strong people but they are hurting so bad for their little girl. There is nothing like sitting and waiting in a hospital for your child to get better. You are helpless in all ways. Please pray for their strength along with Ava's recovery. These times are so hard when you have to be there at the hospital day in and day out. So again I am asking for anyone who would like to help Amy and Nate out a little bit. Even if you just want to send cards of thoughtfulness. This is the kind of family who would be there at the drop of a hat for anyone else in this kind of situation. Trust me they are amazing!! So please if you can help them in anyway. You can send stuff to:

Children's Mercy Hospitals
PICU- Ava Boeckman
2401 Gillham Road
Kansas City, MO 64108

OR

Ronald McDonald House-Longfellow
Attn: Nate and Amy Boeckman
2502 Cherry Street
Kansas City, MO 64108