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. 

HUGE Post...

Wow I haven't posted an update since July! A lot has happened since then. Greyson had his cardiology appointment and everything was great. He doesn't have to go back until December!!! I am both scared and happy at the same time. I am glad that he is healthy enough not to need to be seen until then but what if something goes wrong that we can't see? He also said we don't need to go monthly to have his saturations checked. WHAT?!?!? He has told me that having a saturation monitor at home would just make me a nervous wreck. He sure doesn't know me well. Not knowing what his saturations are will make me more nervous than knowing even if they aren't good. I had been trying before then to get one and since he wouldn't write us a Rx (even thought insurance had said they would pay for it 100%) so I contacted his pediatrician after the PT said that it wouldn't be a bad idea for us to have one at home, since she thought he looked kind of blue when she was out. The pediatrician was happy to write the Rx for it and we now have a saturation monitor at home. It is one of those really good monitors like what they have at Cardinal Glennon so I am confident that we won't have any mix ups like we have had at the pediatricians office. I have checked him a few times just for fun and he has been in the mid 80's!!! Yeah that is exactly where he needs to be. This way I can monitor him at home in case they drop. Dr. Rahimi did say that by the next time he see's Greyson he will likely be at the weight that the Fontan could be done if his saturations were lower. Since we all know things happen on Greyson's schedule that could change at any time. Hopefully he will be able to hold out until he is the reccomended 30-35 lbs. Dr. Rahimi also said Greyson will get the Synagis shot again this year. That will of course depend on insurance. Nate is starting a new job on monday YEAH!!! He will get the insurance information then so I can contact them to find out that they will cover the synagis shot. Hopefully it won't cost us a ton to have them done. I sure don't want him getting sick but maybe living in solitude will be better financially for our family then getting way behind in medical bills.

Greyson has gone so far developmentally. He started army crawling and was happy to be able to get around this way. Being imobile was getting pretty frustrating to him especially seeing Addison running around everywhere. He has now started crawling better on his hands and knees. He can pull up on anything and has been doing that for a few weeks now. He is always standing up in his bed when I get him up from naps. He hasn't quiet figured out how to get back down from there though. He thinks he is really something and is starting to get pretty gutsy up there as he will stand up holding on to the couch or whatever item he is holding on to with one hand. He might be walking around a year like Addison was. Who knows.

Speaking of a year. Greyson will be a year old in 2 months!!!! OMG I can't believe it has been a year, and what a long year it has been. We will be having a John Deere theme party and Icing Smiles has found a baker in our area that will be making his cake. Yeah!! The feelings I have this year about Greyson and his health are much differnt then the fear I had last year not knowing how he would do outside my body. He chooses to do things on his own time that is for sure, but he is so healthy considering how messed up his heart is on the inside.

We are doing a Congenital Heart walk in a little over two weeks in Saint Louis. Any donations would be greatly appreciated. Even a few dollars would really help us. You can go to the link HERE if you want to donate online or I can take donations in person as well. It means a lot to us that you all read this blog and would donate to a cause so dear to our hearts.

I will leave you with Greyson's 9 month pictures. Yes I know he was 9 months over a month ago, but I haven't been around an actual internet connection I could use the computer on and doing it from my phone is a royal pain.  I'm not sure why a few of these are sideways, they aren't saved that way.  Either way, enjoy. 

Congenital heart walk

You can find the link below to donate to the congenital heart walk we are doing in honor of Greyson and other children like him. I hope that you all can donate even a few dollars to help support the research of this #1 birth defect.


http://congenitalheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=475324&lis=0&kntae475324=C34499822F864A79ADAE5320FCDA9577&supId=330295526&team=0&nmv=true

I have not posted in forever I know. Sorry. I am going to try tonight to update with Greyson's 9 mo pictures that turned out AWESOME!!! I will have to check the blog to see what else I have missed. Lots I'm sure. Please take the time to donate a few dollars to thus cause so dear to our heart.