Here we go!

So it seriously has been incredibly too long since I have posted. There are many physical and emotional reasons for this and I am sure as I write more, they will come out. It is obviously too much for one post, or even several. But I did promise myself that I would start this blog back up and running. I will hit major highlights.

LJ did have his open heart surgery on August 5, 2009. He did great. We were out of the hospital within a week and besides some pain managment issues, everything was fine. We had a check up a week or so after and the another in Feb of 2010. The bad news is that the surgery was not as successful as they had hoped it would be. They did a corrective surgery where they cut away the restrictive part of LJ's pulmonary valve and replaced it with a flap. The valve went from being too restrictive to being too loose. LJ's heart is now regurgitating (being blood back into the heart) through the pulmonary and tricuspid valve. He cannot sustain this forever. His cardiologist said there will come a time when he will just get really sick and they will fix it then. *sigh* Nice. LJ ended up with tubes (for his ears) at the end of January. The end of March brought a 5 day hospital stay brought on by a bacterial infection that he couldn't kick. Since then he has been doing great. We have had early intervention for his speech and that is really picking up . He is walking, talking and just all around handsome.

Kaitlyn has grown so much in the past year. Her vacabulary is enough to blow my mind. She is smart as a whip knowing her letters by site and their sounds. She can count to infinity (or so it seems), she knows her shapes, colors, animals, etc. She is now learning addition and all before she has even turned four. She is a sponge who asks to do homework in her free time. I indulge her since it is her request. She has started gymnastics at a real gymnastics gym and is loving it. She is making lots of friends and has started going to birthday parties, which she LOVES!

Myself? Well I finally graduated! In between Dr appointments, surgeries, hospital stays, illnesses, I somehow managed to graduate. I started working at the US Army Corps of Engineers here in Champaign as a post doc and hopefully will be brought to the federal level soon.

Jim? Well he has moved to the day shift! PRAISE THE LORD! Shortly after graduating, Jim was able to move to a position at the local hospital surgery center and works the day shift now. Life is finally back on track and we have a normal family dynamic that I will never take for granted again.

We moved! Yes, we bought a house here in town! A nice two story (though I wish it were a ranch) in a great subdivision full of kids. We love the space (1990 sq ft with 990 ft of basement) and the fenced in yard! We have slowly started filling it. Kaitlyn has a new bedroom set that she boasts about to everyone. We have a new bedroom set with a king sized bed! No more fighting for space! We bought a new camper and plan on many camping trips this year. Oh and right after Thanksgiving our Saturn met it's demise as Jim was struck (everyone is OK). So we now have a 2010 Pontiac G6. Until we bought it, I had no idea there was a song about it. Now everyone hums it when I tell them what we bought.

So there you have it. This is the start. There will be more to come but I wanted to hit the high lights.

Schedule of Events

I am sorry it has taken so long to update. Things have been a whirlwind since Landon's appointment on Monday. His echo showed no improvement and, therefore, surgery is needed to replace his pulmonary valve. Shortly after the appointment, probably due to stress, I became a bit ill. Thank goodness my mom was around to take care of the kids so I could rest up for the rest of the day, that night, and the following day.

Of course, one can't help but think of all the scary things that go along with open heart surgery. It is just frightening to think of my 4 month old son having to go through so much. However, after I started feeling better, I started planning for the event. Buying outfits for him to wear at the hospital that would allow access to his chest but still keep him warm, new socks, finding care for kaitlyn while we are at the hospital, etc.

I was able to talk to a wonderful nurse about the whole procedure. This isn't going to be a permanent fix. The valve will have to be replaced as Landon grows. No one is sure how long Landon will have between surgeries but she said to count on years instead of weeks. Even after Landon stops growing, there is a chance of it having to be replaced since the valve can calcify (harden) and need to be replaced. Depending on what size they need for Landon, the replacement (for now) will either be bovine (cow), pig or human. After he stops growing he could possibly get an artifical valve.

Landon is set for surgey on August 5th (this coming Wednesday). He is the first case of the day so he should be in the operating room around 7:30 or 8:00 am. I was told to expect 4-5 hours for surgery where the first hour is getting him all set up and the last hour slowly taking him off the bypass machine. His heart does not need to be stopped for the surgery ( I didn't even think of that until the nurse mentioned it). Landon will be in the cardiac ICU for 2-3 days before being moved to the progressive care unit where he will be for another 3-4 days. So it looks like, if all goes well, about a week stay in the hospital.

To top it off, Landon had an urology appointment this past week. He has what is called a hydrocele (fluid around his testicle). Usually it goes away on its own but Dr said that it is commuting ( I dont' know what this means, I should of asked) so will most likely need corrective surgery. Not as big of a deal, it is same day surgery.

Phew. There is the update. I promise to have constant updates the day of the surgery as we are updated on Landon's progress. And, of course, we never would turn down a prayer for our litle man :)

And now, some pictures

She made it

My mom that is. She pulled into town around 7:30 pm, just in time to see kaitlyn for 30 minutes before bed time. It was a small relief to see her. It is slightly reassuring that we are starting on this journey, for better or for worse. At least it is getting started and I am not sitting around and waiting for things to happen. I am in the office now. My undergrad from the summer has a poster session in about 7 minutes. I will attend that then head back home, pack up my mom's SUV, and then her, the kids and myself will head back to St. Charles, MO. Jim is staying behind to work. He is out of paid leave and will join us in St. Charles in about week, just in time for the surgery (we are planning on the surgery). Jim doesn't want to be apart that long but he is happy to know that he will be able to get all the sleep his little heart desires while we are away...or at least the oppertunity will be there. I am sure he will find himself on Facebook most of his free time, tending to his Farmtown. It is strange how a grown man can be drawn into such things.

I will keep this blog updated as we go through appointments. And the day of the surgery I will have constant updates and we are updated on the progress of the surgery. I am still looking for things to keep my fingers and mind busy while the surgery proceeds. I bought a lot of yarn..Landon will have a few new blankets when all is said and done. Now if only I could bring my sewing machine. I have a lot of sewing to do! I will have to post pictures of my projects :)

Kaitlyn has decided that she likes to jump. Unfortunately, she like to jump OFF of things and her coordination in the landing department is seriously lacking. You think it would stop her, but it doesn't. Crazy girl. I have also found that she will eat nearly anything if I put sprinkles on it. It's kind of nice...but disturbing when mashed potatoes have sprinkles.

Old Men and Hair

So I have realized that hair coloring for men is just not as advanced as it is for females. That, or men just can't follow the dying procedure printed on the paper. To me, it is just completely obivous when I see a man who you know has 100% grey hair with a boxed dye job. It looks so fake...nearly like a wig. I have to chuckle to myself. Who are they kidding?

Tonight my mom is coming into town. She will watch the kids tomorrow while I finish up some things here in the office. Then she is driving the kids and myself back to St. Charles. Landon has his Hail Mary appointment Monday. Basically we are going to check to see if by some miracle his valve loosened up after being released. BIG FAT chances are that it will be the same as before.

Then a week from today we go back to Children's hospital. Of all things, the boy's testes aren't quite right. One of them has fluid built up around it so it is pretty gigantic when compared to the other. I noticed this right away but when I asked my husband, he said it was normal for them to be not symmetrical..i figured it was like women and their breast. But after he checked them out some more, he said they were too different. Sure enough, at the 2 month appointment the Dr confirmed the excess fluid. So we go see the Urologist next week as well to start up the patient process. This could clear up on its own but it could also become herniated. So we will keep following up with that.

A small milestone, as of right now, all the hospital bills are paid in full. I know this is only for a short time, but at this exact moment, the balance on all accounts is ZERO! Insert a happy dance here.

Survival Mode and Sugar Daddies

No, they are not related. Just two things from my day.

The first being the most difficult. Since the day we found out that our son had heart issues (at 29 weeks pregnant) I have been in survival mode. Going day to day, doing what I have to do to make sure the pregnancy, delivery and his every day care was, well, taken care of. Pushing back to the furtherest part in mind, the real fact that Landon's heart was/is not OK. Yes, there are several things that the Dr's can do to help to eliviate the side effects of his defects but there is NOTHING they can do to "fix" the defects. I simply pushed back the thought of complications with surgeries, oxygen levels, pressures of his ventricles, etc just to stay sane on a day to day basis. Then there are the times when I come out of survival mode and face the situation we are in. It's hard. No one can promise that Landon will be "normal" when it comes to heart function. There is no promise that replacement/repairing the defects will be successful and there is no promise that there won't be complications with the open heart surgery. It's very real and very scary. Tears. Lots of tears. Then I suck it up, dry my face and continue in survival mode. Why am I telling you all of this? Basically because I need to write it out. It makes me feel better. And with Landon's appointment date getting closer and closer, I need to do all I can to make myself feel better.

Ok...off of the heavy stuff. Onto something I found quite funny today. There are many things that go along with being at a large university. One of those "things" are the large amount of international students. I love having them here. I learn a lot from them. I was sitting next to a large piece of equipment today when an international grad student was sitting next to me. For lack of anything else to read, she had managed to bum off her labmate a "Men's Health" magazine. She opened it to the commentary from the editor and it was labelled "Sugar Daddies" to which she pointed it out to me and asked me to explain what a Sugar Daddy was...and no, the article was not referring to candy.

back to the grind

A tease of some pictures

I owe a lot of pictures. These are older ones from mid June. I promise to get more recent ones up here soon .

Small Glimmer of Hope

I spoke with Landon's cardiologist. First, I was suprised to be able to speak to him directly on the phone. He is one busy guy. I figured I would get a nurse calling me back.

Small Glimmer of Hope: he says there is a small chance that Landon's valve could loosen up after it heals from the Cath. A small chance....but a chance. This would prevent surgery. Crossing fingers.

Echo is scheduled for the 30th with tentative surgery on the 3rd of August.