New news...

What have we been up to?  Well we have been doing a lot here lately, and we have lots of stuff coming up this week.  Greyson turns 1 on Friday!!!  Yes I said Friday, as in this Friday, as in 3 days from today!  Where has the past year gone?  We have done so much and been through so much it doesn't seem like it is possible for an entire year to have gone by. 

Well here is what we are up to now:

Eating Jumbo pumpkin shaped marshmallows!

And ABSOLUTELY loving them!

He ate two and I really think he would have eaten more if we let him.

Lots of swinging, it is by far one of Addison & Greyson's favorite things to do outside.

And playing with cousin Ephan (Ethan).

Some great news for our family.  Ethan and his baby sister Grace will be staying with us every weekday.  I am so excited to be able to give Addison someone to play with everyday.  Today was the first day and there was much less TV watched in our house then before.  Lots of playing and a few tears as Ephan adjusted to being away from mom.  He has had her all to his self for the past 6 months or so.  We are very excited that they will be staying with us, and excited for all the fun stuff we have planned.

So what is coming up? 

Thursday Addison has her first ever dentist appointment.  They are only going to do an exam and fluoride treatment right now but I still think it is a good idea to get her used to sitting in the chair and someone else looking around in her mouth. 

Friday we have Greyson's 1 year check up and Flu shots for both kiddo's.  I have a feeling some tears will be shed at that appointment.  We are also making cupcakes for the birthday party on Saturday, and will get our icing smiles cake either Friday or Saturday.  I am so excited to see everyone and celebrate little man turning one. 

Both kids got Medicaid approval, so Greyson will be getting his Synagis shots again this year, this is HUGE and hopefully they will be able to come to the house and give him his shots. 

I will be taking my camera to the dentists office and hopefully the pictures won't be full of tears, but beautiful white smiles.  There will for sure be a huge update after Saturday's party.  

Growing WAY TOO FAST!!!

So Mr. Greyson is growing super fast.  It seems like he is just doing things so fast here lately.  He will be 1 yr old in just 24 days!  Where has the time go, I won't go into detail on what he has been through in such a short 12 months as that is a whole other blog post to come closer to his first birthday.  So Greyson has found a huge vocabulary.  He says Mama, Dada, yeah, yum, hey, no-no, and tickle (yes tickle it was one of his first words).

He has mastered the crawling thing in little to no time, and cruises the furniture too.  His newest thing...Standing up all by himself!  He started doing it when I would stand him up but has quickly learned to crawl over to me when I am laying on the floor and stand up from there.  His physical therapist, Gerti, was out this past week and showed me how to help him get his feet under him when he is crawling to stand up.  As soon as she would get his feet under him he would stand right up.  I have a feeling crawling isn't going to be enough for him here pretty soon.  He is happy to be mobile but I still don't think he enjoys how fast Addison can get away from him.  His other favorite way to stand up is to crawl over to the ball pit and stand up outside it then flop in...hmmm I wonder who he saw do that? 

We are working on walking before his first birthday. I think he will be there 4 weeks ago he wasn't even crawling on hands and knees. I think with some work he will have it mastered in no time. Then I am in real trouble trying to chase down two walkers. So what does he NOT do well apparently he doesn't grow teeth. He still has NO teeth in his mouth. He is down to nursing only once a day in the morning we cut out the night time feedings and are working on cutting out the morning ones as well since he seems to do well with milk. I don't know if he doesn't like the strawberry milk or if it is cold, he didn't seem to like plain milk so I put strawberry in it since Addison loves strawberry milk so much.

So now that he can crawl and stand what else new did he learn to do?  That's right crawl up onto things.  Here he goes pulled up on it...

 One leg up...

Both legs up...



Standing up in the chair...

Sitting down pretty proud of himself!

So as you can see there have been lots of NEW things happening at our house.  Now that summer is pretty much over we are moving onto fall.  Which in our family means the beginning of all the holiday stuff, which is my FAVORITE, and birthday parties for our kids and their friends.  We are going to the heritage festivle in town next weekend, which is where I found one of the super cute winter hats Addison had and am hoping to find one again this year and maybe one for Greyson.  We plan to pick our pumpkins from the field this year instead of the bins at Wal-Mart and go pick apples too to make some yummy apple crisps. 

Halloween is the next holiday coming up, after Greyson's birthday (which is a holiday for us), and Greyson is going to be a Vampire which I think is pretty fitting since he may not have sucked other peoples blood but he has had other peoples blood, lol, and I am sort of at a loss for Addison.  Any idea's would be great, I don't really want the whole bought at the store costume, but I think that is what we will get, I want something a little original at least.  I guess I have a while to think it over.  

Heart Walk

The first annual Congenital heart Walk was held in St. Louis this weekend.  Team Greyson raised $655 thanks to all of your donations.  We had a great time, even though me and mom are NOT in shape to walk 3.7 miles.  I am thinking I may try to do a Central MO congenital heart walk sometime next year. 

There were many fun things to do before the race started including face painting.

Addison got a unicorn painted.  It probably would have been a little better had she decided to sit still a little longer.  She is only 2 what can you expect though.  She was pretty proud of it and had to show it off to everyone once we got back home.  (by then she had touched it so much it was pretty much rubbed off)

Greyson didn't partake in the face painting as he was too busy enjoying the yummy Krispy Kreme doughnuts.  Guess he will be really excited when we go to Tulsa and get them fresh off the line.

In following her horse theme, she got a pink horse with a blue main and green reins.  She was pretty proud of this too and it surprisingly made it through the day intact.

Team Greyson (minus mom taking the picture)

The last half of our walk we got to talk to a woman who's daughter is one of Dr. Jardini's patients (he was the Dr. who did Greyson's cath and who took care of him most of his time in the NICU).  I can't recall what defects her daughter has but she did end up having a Classic Fontan when she was three.  It was neat to be able to talk to someone who has been down this road, and at the same facility Greyson goes to.  I am very thankful for everyone who donated to our walk.  Hopefully we will have a lot bigger team next year for the walk either here or in St. Louis.

We got a place for Greyson's birthday party so now we are in full planning mode.  I will work on getting evites out to everyone and an event on Facebook as well.  I am so excited for this party.  I was excited for Addison's party of course, but I am glad Greyson is still with us.  I wasn't sure on the day he was born if we would make it to this point with our little boy.  I am so thankful we were blessed to have Greyson in our lives and look forward to planning many more parties for him and Addison.

On another note, I changed my iphone plan to be able to use it as a modem for our computer so I now have internet access on the computer at home...or anywhere!  I am SUPER excited and I am guessing you can expect blog posts more often now. 

Camping, swinging, & a biker Chick!

We went up to Mark Twain at the beginning of August to stay with GJ & Grams.  Addison was super excited to go fishing and caught the first fish.  Of course mommy was back at the camper with Greyson and daddy doesn't take pictures.  Addison was helping clean fish by investigating them before handing them to GJ or daddy.

Greyson decided to play in the nasty fish water too.  I won't hold a fish but my kids sure don't mind them.

It has been some what cool a few days this past week so we headed outside to do some swinging.  Addison swings as high as the moon, no matter if it is day or night, and she wants you to stop her, pull her back as far as you can and let go.

Greyson had a good time swinging as well.  I love that something so simple can give them such enjoyment.

Addison loves riding motorcycles.  Daddy took her on a ride around the neighborhood on Kelly Sue.  She LOVED it.  (I think Daddy might have enjoyed it too).  He asked her if she was alright.  She said I am doing fine daddy.  When he asked her if it was fun. She said yeah this is SO much fun.

She had a good grip and the saddle bags were a great foot rest for her.  She's a biker chick in the making!

Playing with Friends & Grants Farm

A few weekends ago we went to visit with some friends of ours.  They have a little girl who is 9 months younger then Addison and a little girl who was born about a week or so before Greyson.  Addison and their oldest, Kylee, are finally to the point where they will play together.  They were running around the living room doing the Ashes, Ashes dance and the little bear dance, I am only sorry Natalie had to listen to me singing those songs. Ha! Sadly I didn't think to take pictures of this, I need to really work on that, lol. Greyson and Peyton are finally both to the age where they are mobile and interested in each other. 

Greyson decided Ms. Peyton was pretty cute and crawled up on her so he could give her a kiss.  It was too cute, of course that was before I got my camera out.

We had to go and rescue GJ & Grams at the state fair on the last day and actually had a great time.  Addison was infatuated with the Bunnies, and told GJ he needed to buy her one.  She just went from cage to cage petting which ever one was close enough for her to reach.

We went up to Grant's farm since none of us had ever been there we were pretty excited.  After getting almost to the front of the line, I realized we didn't have the diaper bag and had to literally run back to the car and get it.  Let's just say I am NOT in shape! 



We rode the tram into the actual park, and got to see lots of animals along the way.  Greyson really enjoyed it, and Addison could hardly keep her butt in the seat from jumping up to see them.

Once you get into the park there is a big fenced in area FULL of goats.  You can buy baby bottles for $1 and feed the goats, we started out with 3 bottles, and had to buy 2 more.  Greyson was alright just watching Addison feed the goats, which went fine until they tried to jump up on her.  I love Nate's face here, since a goat had just bitten his hand.

Addi thought it was pretty fun to feed the goats wrapped up in daddy's arms.  See how happy everyone is here.  Shortly after this, the goat Addison was feeding decided to jump up on her because the bottle was gone and he didn't appreciate that.  A goat bit Greyson's toes and both of them were SCREAMING!!!  Greyson was getting tired and hot so him and daddy went into the AC and we got Addison a few more bottles to feed the goats.

She also decided to pet the goats and brush them, and informed me that Aunt Sharon needs to get more goats. She doesn't ask for much huh?

 

6 months ago today...

It was 6 months ago today that we handed our sweet little boy over for open heart surgery. As much as I wanted to just run away with him so no one could hurt him I knew in the long run that wouldn't have helped him either.



Here is Greyson right after surgery. This is what we saw as soon as we got to see him. Thank to another heart mom's journal I knew somewhat to expect. It doesn't make it much easier but at least we had an idea. We had an idea of all the tubes he would have attached to him and all the drips he would have.




Here is Greyson the next day once he was extubated and could have his paci. He got to eat that afternoon too and that made him pretty happy.



Apparently he was done with the IV and thought it would be a good idea to chew it out. ;D



It was so nice to finally see this smile again. Granted typically we get bugger smiles then this one but what can you expect. Who really wants their picture taken when they are recovering from open heart surgery.



He was pretty excited to have this dinosaur from sissy's visit to the STL science center...or maybe it was the fact that the doctors had just told us we could go home...or maybe that he no longer had drain tubes in.

We are so glad to have our little man with us. He is a fighter. We are happy to have one surgery behind us but still worried about the next one. I try not to dwell on it or think too much about it and just enjoy my little boy. It will be here and gone before we know it.

Every heart has a story...here is Greyson's.

We are glad to be a part of the Every Heart Has a Story event this year.  It is set up by a fellow heart mom Stefanie and you can view it HERE. 

We went in for our 20 week ultra sound excited to find out if we were having another little girl or a little boy. Our ultra sound tech knew we wanted to know and she was pretty quick to let us see the goods. A boy it was. The morning turned out much differently then we had planned when we went to the doctors appointment and were told our baby had a heart defect. We were immediately sent for a more detailed ultra sound and were told our baby had a whole between the chambers of his heart but they couldn't tell us more and in 5 days we could have a fetal echo to tell us exactly what was going on with his heart. We were devestated. We had known we were having a boy for mere hours and had made plans for his life, plans that didn't include a heart defect and the unknowns that came with it. Looking back I am extremely thankful that our ultra sound technician found the holes in his heart. Our lives could have been very different without the prenatal care and time to adjust that she was able to give us.

Our fetal echo showed that our boy had double outlet right ventricle, transposition of the great vessels, and a ventricular septal defect. The surgeon, Dr. Fiore, was pretty certain he could close the VSD and do an arterial switch operation.

The remainder of our pregnancy went relatively normal aside from the weekly biophysical profile's and non stress tests. We had an amniocentesis on October 1st to check lung maturity and found that the lungs weren't fully ready. However baby was ready and 6 days later my water broke, luckily we were already at the hospital because of contractions. We were scheduled for induction on October 8th but clearly baby had other plans.

Greyson Dale Knigge

Greyson Dale was born on October 7th, 2010 at 6:30 am. He weighed 6 lbs 6 oz and 21 1/2" long. He looked very healthy and was later transported over to cardinal Glennon hospital where he had another echo. During this echo they confirmed his VSD, DORV, and TGA. They also found he had pulmonary stenosis, a blockage below his pulmonary artery and that his valves had attached through his VSD. They decided to an balloon septostomy at 10 days old and we were home by the time Greyson was two weeks old.

Hanging out in the NICU

Getting ready to head home!!!

His saturations held in the upper 70's for a while but started to dip and he was put on propranolol to help his pulmonary blockage. This was the only medicine he was on. We scheduled his Glenn for march 3rd. In true Greyson fashion he apparently didn't want to do things according to our schedule. His saturations dropped into the mid to lower 60's and Dr. Fiore decided to do his surgery the next day. We were terrified but somewhat relieved to not have 10 more days to dwell on things. We took Greyson to the OR on February 22nd just two days after his sister's 2nd birthday. His surgery went excellent. He was in the PICU for 3 days and on the floor for 2 days. He did excellent recovering from surgery.He went home on half a baby aspirin a day which he will be on for life. He was a totally new baby.  We didn't realize that we had taken home  a newborn and he had never grown into a 4 1/2 month old boy.  We got our 4 1/2 month old after surgery.  It was a real shock to see how little energy he did have. 

Greyson & Addison playing the night before his Glenn.

Just extubated the day after surgery.

Getting some rest.

The only smile he would let me catch 3 days after surgery.

Playing with the dinosaur sissy got him the day before we went home.

Greyson still has his fontan when he is 30-35 lbs but for now he is doing excellent. His saturations are typically mid 80's but have gotten into the low 90's. He doesn't have any other affects from his heart defect and eats and grows very well. I know we have gotten very lucky and never do I take for granted how well he is doing.

Who knows what our future holds. For now we have our little man with us and we will try to live life day by day and not worry about the upcoming surgery.I know, like most parents, I am terrified that my children will be taken from this earth before me, it makes it even harder when you have to send your child into surgery knowing there is a chance they won't come back alive or that they will come out in pain and wanting comfort that you can't totally give. We would trade places with him in a heart beat if we could but he is such a strong little boy and has taught us so many lessons. He has grown so much in the past 10 months.  Monday the 22nd will be 6 months since his surgery.  I can hardly believe it has been so long and we have come so far.