It's been a while, huh?

Yes, it sure has been a long time since I updated this darn thing. I think part of the reason is that emotionally, I have been doing OK. I came back to my blogging earlier on when I just had all this emotion inside of me that I had to put out somewhere. I figured if I put all of my thoughts into typed words, that it would cathartic. And it was. But then, silly me, felt that I would feel better. Well, I did but then I realized that it helped me to deal with the thoughts rather than "get over them." I find I still cry randomly. Mostly when I am driving alone. I think of LJ's past or all the possibilities of the future and the tears come. Sometimes just starring at him is enough to do it. He is just so amazing and the thought of how fragile his life is just really cripples me at times. BUT, not as much as it used to. It doesn't build up too quickly since I have been able to put a lot of my worries here.




So enough with the heavy stuff. What has been going on here? Looks like May was the last time I updated. SOOOO we went camping Memorial weekend and the weekend of the 4th of July. Camping is something the husband and I share as a hobby. We bought a camper last year and we are finally putting it to good use. The plus side is that we are always dry, it helps with the storage of alot of our camping gear, and we have kitchen convinces. However, it is incredibly expensive to tow which nearly contradicts why we wanted it. We are lucky to have enough parks within 4 hours of us that at least makes it do-able. The kiddos love going out into nature and I love that the hiking all day makes them crash at the end of the day. Here is little miss on a hiking trip

And of course, the boy

We've filled our summer with trips to the park, swimming, biking, visiting grandparents, and camping trips. It is hard to believe that the summer coming to and end. Somehow, in the middle of winter, the dreams of summer make it seem so long with an infinite amount of time to get and out "do things."

A new adventure for Kait this summer was dance class. For months she has begged to take ballet. So I caved and signed her up. Leotard, tights, dance bag, tap shoes and ballet shoes bought. She was in absolute heaven the first three times she went. THEN, the last two times she decided that she wanted a long break. To be honest, I wanted to be "that parent" to makes her keep going because, well, she is just so darn cute when she does it and it was quite a bit of start up money to get all the gear. But I know better, I told her we have to finish out the session and then she can take a break. But I also reminded her that anytime she wants to go back, she can. I hope she misses it :) In the mean time, she still loves gymnastics and we continue to go to that weekly.

Well I will wrap this up for now. I have more things to post about but I will try to space them out. I think I will be back regularly for a while now. Not because I am struggling, but really, just to share about life.

There is a woman that I know

There is a woman that I have known for almost a year. We were put in contact through a mutual friend since I have a child with a heart defect and she was pregnant with a child who also had a heart defect. Those outside of the CHD community don't realize the instant connection a heart mom has with another heart mom. There is just an emotional understanding, something I really don't wish on anyone. We connected first on Facebook (of course, right?). I answered the questions about carrying a baby with a CHD, ultrasounds, delivery options, possibilities. I loved all the updates. Eventually, we were texting. Not much but here and there. The big day came, the baby was born with an uneventful delivery of a handsome BOY! :) A couple days later, baby would be going in for surgery sooner than expected. I made the call to her, our first phone conversation. We laughed about the size of our kiddos (hers was 9 lbs and LJ, 4 weeks early, was 8 lbs). I encouraged her with how much of a fighter her baby was. She was getting ready to go eat - the last text that I got from her. Little did I know her world would change.

The next day I was working in the yard and preparing for a camping trip. Then my phone rang, it was our mutual friend. Baby didn't make it. I was angry. I screamed....cried...admittedly, probably threw a pillow or ten. It was hard. I cried for her. I cried for me. It affected me so deeply but that is not the point of this post. I knew a phone call right now would be inappropriate but I sent a text that I was praying for her. And I did every single day. About 3 days later, there was a reply. "Numb." She didn't have to explain any more than that. I just kept sending daily texts to remind her that I was praying for her. The next few months, well, she is the only one who could really describe it, I won't due it justice. But we texted a lot..so much my husband would comment "you never even met her!." There were actual phone calls mixed in as well.

Then the day came that my phone rang. It was her. Big news.....she is pregnant and completely, 100% terrified. I mean, how could she not be? It wasn't exactly in the plans and she thought it was the worst timing. (Today, I strongly beg to differ, it was perfect timing). There were a lot of emotional struggles. I prayed everyday for God to bring her a healthy baby, not because a baby with a CHD is a terrible thing, but it was important for her not to feel broken. I also prayed for a healthy BOY. Not for a replacement, but again, for a sense of not being broken.

Today, she is a bit more than half way through her pregnancy. The baby - A BOY! And 100% perfect. 100%! The reason I am sharing someone else's story: this woman is one of the strongest women I know. She is a daily inspiration to me. She has been through my worse nightmare and even though she was completely terrified, she is pushing through. She shows the world that her life will never be the same since losing her son. However, a new sense of normal can be found, even if it is unexpectedly.

Really?

It's almost May.....Really? Seriously? Where did April go? I had so many plans for April and I got to about half of them. The time just seems to fly by much too quickly. May brings in the summer which ends up being booked every weekend. I look forward to the warm weather and all that it brings. Time to break open the camper and stock it for the summer. Hopefully it means that soon I will be packing away the kiddos winter gear and pulling out the dresses (for Kaitlyn) and shorts (for them both).

Of course I want to lose 20 pounds (ok not 20) so I look amazing in a swimming suit, but let's be honest, that won't happen just as it didn't happen last year. I want to get the boy potty trained, but let's be honest, it will probably happen in the fall. So many things that would be so wonderful but in all honesty, we will just be too darn busy and I CANNOT WAIT! We are definitely an OUTSIDE type of family. Bike rides, trampolines, gardening, camping trips, walks, baby pools, etc. Any reason to be out on a nice day. SO BRING IT ON!

On a wonderful coupon side note, I made a trip to walmart yesterday

2 full sized bottles of Old Spice Body Wash
1 full sized bottle of Nivea Body Wash
2 packages of panty liners (18 )
3 rolls of dental floss

subtotal before coupons $15.06
After coupons $3.09

8 items for $3...that is less than 50 cents each. Yep, I'll take it. If most of them didn't expire yesterday I would have described the coupons more.

I am definitely jumping back on the coupon bandwagon. I jumped off about 2-3 weeks ago ..things were just getting crazy and I wasn't getting around to checking them out. I was price matching and hitting up CVS but not so much the coupon match ups. So here I go, back into the game.

My little princess also turned 4 this week...a topic for the next post. But let me tell you, it stirs up all sorts of emotions and I will get into next time around. CHEERS!

I cut myself off

This weekend was set up to be a hectic one. Hubby was working until Friday night (we recently agreed to changing his schedule) something that was not happening when we made plans to go back to our parents' homes for Easter/the kids birthdays. This meant that we would be leaving town early Saturday morning and returning Sunday late afternoon....a very busy weekend made busier by the shortness of the trip.

The alarm went off at 5 AM on Saturday morning. We packed up the car and off we went. Three or so hours later we were pulling up in front of my parents' house. Know what I did? I DID NOT BRING MY PHONE. Nope. I made the decision to cut myself off. If someone needed to get a hold of me, there are several other avenues. I wasn't anticipating any major news so I just didn't bring it. To further that thought, I did not open facebook. I admit, I opened my email once on Sunday morning to make sure nothing crazy was happening (it wasn't).

I took that short trip to just focus on MY FAMILY, on being together, on living in the moment and just sucking up all the goodness I could. It was nice. I watched my kids open presents, hunt Easter eggs, pig out, eat cake, love on all of their family, and I didn't think twice about if there was a text sitting on my phone. There wasn't updating anyone but the present family members on my life and how things were going. And you know what? Nothing crazy happened.

Of course there are a million pictures that I took.....on my mom's camera. Hopefully those will get back to me soon. But it was a nice weekend. A nice week of connection in the midst of being disconnected.

Birthday, vomitting, ER visits

Well, the titles really gives details as to why it has been silent here. Two Friday's ago, LJ started vomiting. He wasn't keeping anything but water down. Of course, this is two days before his 2nd birthday so I was hoping it was a fast acting bug. All day Saturday he pretty much was on the couch and vomiting. We celebrated his birthday Saturday and he was able to muster a smile for the cake and pictures but shortly after, there was blue vomit on my floor (from the icing). Saturday night it visited me taking me out of commission all day Sunday. Kaitlyn caught it Sunday night. The hubby skipped it all together...not fair. Kaitlyn was fine by Monday morning, as was I. LJ, on the other hand, was still vomiting. After a trip to the Dr and his inability to keep down pedialyte, we headed to the ER. No tests later, they gave him Zofran and sent us home. The zofran kept him calm so he could sleep but he was vomiting by the next morning. All week, he would eat something solid and it would come up. Needless to say, I was a wreck. For those who are not privy to the life with a heart baby, any signs of not feeling well and your mind jumps to heart failure. It's programmed in, not sure how to remove it. If LJ's potassium goes crazy, then so could his heart. Dropping weight is a nightmare for a heart kiddo and just seeing him not keep things down, it's hard. After 5 days I was worried that it wasn't a virus anymore and that maybe he has a blockage or early signs of failure. Yes, I was in tears with the nurse. I was a mess. Frustrated was putting it lightly. Day 7 came, he vomited. I told the nurse that he did it again that I was packing him up and going to Children's Hospital in St Louis (a three hour drive) since his cardiologist is there and they are more equipped to handle this. Over reacting? Maybe. But I was set to do it. Hearing that they couldn't do anything for LJ here since he was moderately hydrated was making me angry. LJ took pity on his mom and didn't vomit again. We have our happy little boy back and a week after his birthday, we were finally able to give him his present, a water table :) Here's too a healthier spring! BRING ON THE WARM WEATHER!

Guilt

Someone once asked me, after being involved in the community some, if I ever have survivor guilt. Do I feel guilty that my son made it and others have not. Selfishly, I can answer no. That sounds horrible, doesn't it? I do not have guilt that my son is here. But there is guilt that I have a child here. Gosh, that doesn't make sense. From what I understand, survivor guilt is when you ask "why not me?" or in my case "why not my son?" And I don't think that. It also does not mean that my heart doesn't completely break when I hear of the struggles or passing of a heart kiddo. That doesn't mean that I don't cry every morning when I catch up on how each kiddo is doing. That doesn't mean that I don't pray for God to show his grace and offer peace. There is no guilt that my son is here. I feel incredibly blessed and pressured to make sure that LJ is a true testament to the grace God has and is an inspiration to those who are struggling with defects as well. Here is where the guilt (I guess you can call it guilt) lies. When talking to moms who have lost a child, I do feel incredibly guilty talking about LJ. If he is sick, if he is reaching milestones, if he is doing something incredibly goofy that makes me smile. I just can't bring myself to share LJ to those moms who are going through more than I am. I feel guilty because I can talk about that and they cannot. If LJ had a bad night I keep it to myself. I am sure that mom would have a million horrible nights if it meant that their child was back in their arms and doing as well as LJ is. It keeps me in perspective of things but almost makes me feel like I hide him away. Even after asking flat out if it bothers them, and it doesn't, I still can't do it. Or if something slips out, it immediately feel awful.

And that is that

So we found a new daycare. One side of me is soooo excited and the other side of me extremely sad. To help ease the transition I wanted to bring the kids to meet the teachers over one of my lunch breaks so that it wasn't a huge shock. That morning I told Kaitlyn that I was going to take her to her new school to meet her teachers and she was excited. "Good," I thought, she isn't scared to at least meet them. So I dropped the kiddos off at the old place and first thing she mentions is that she is going to her new school to meet her teachers. I was slightly embarrassed but it has to happen, right? It is obvious that we have to find a new place.

I went to grab the kids who were excited to see me in the middle of the day. Each of Kaitlyn's classmates gave her a big hug before she left, without prompting. Wow, that hurt a bit. She is not going to be with these kids in a week or so. They all love each other so much. I bit my tongue and held back that burning tear. We pulled up in front of a very cheerful looking house. "We're here!!" and Kaitlyn screams "YAY!!!!!!" I wasn't too optimistic because she can be brave from a distance but can hide quickly when put in a situation. We walk in and Kaitlyn immediately runs to take part in circle time and is participating without any encouragement. LJ also runs and sits as well. I worked on some paper work and the kids played. We even went outside for playtime there. Kaitlyn made a new friend. Their arms were around each other as they sat on a bench and when we were headed out, we had to convince them to let go from their hug. Of course, LJ charmed the pants off all the teachers and laughed a lot!

We left. Since then Kaitlyn wakes up every morning wanting to go to her new school. Even after I mention that it means not going back to the old one where her friends are, she still wants to go.

So that is that. She is thrilled and cannot wait. The only one sensitive to this whole transition is me. I found that I am much more affected about my daughter surroundings than she is about herself. She is excited about this new adventure and her new friend. SHE LOVES THIS CHANGE! My daughter, the one who melts if our daily routine is thrown off, is just thrilled about changing up everything about her day. Lesson learned, stop fretting change, be excited. Thanks Kait! Thank being said, three of her friends from her old daycare will now be starting the same one as Kaitlyn :)

Changes

I am not wanting to go into gross detail on this. But we are changing daycare providers. Let's jump back about a year ago, shall we? December of 2009 we decided to place our kiddos in a daycare. Kaitlyn was in a daycare until she was 20 months old and we switched to a friend watching her. By December of 2009 she was 2.5 and LJ was 10 months old. Daycare was the best option as our friend moved. It was all going well, until it wasn't. That's really how it always goes. I could tell something was up when the attendence of the kids went downhill. We prepared to change providers but there is something that kept me there. Kaitlyn routine. She had friends there. LJ had two people in his room that JUST LOVED him and I know how much he loved them. I tore my stomach apart having to move them but then the daycare announced it was closing so really, I didn't have to make the decision. They started a new daycare May 2010. It also was great until it wasn't. We thought about leaving. But again, TORE ME APART. The teachers there loved my kids....loved like their own kiddos. They would text pics of the kids to me through out the day. I became even "hang out when the kids aren't there" friend with one of the teachers.
But there was an event and it caused us to question if we should keep our kids there. Husband was set on moving them but it made me sick. I knew it would upset the teachers...there could be the possibly that my friend wouldn't be able to keep her job there as the attendence would be too low. It. made. me. sick. BUT you have to do what is right for you kids. Annoucement this morning: daycare is down sizing. We didn't make the cut, we were given termination papers. Phew, I didn't have to initiate the break up. Teacher was crying, she didn't want to have to downsize but she couldn't afford assistants. I am still feeling ill. I know we HAVE to change now but I hate that my kids have to start all over again. They will lose their daily friends (of course we do plan on play dates...but it isn't an everyday thing). Kait, one who lives by a schedule, will be completely devistated. LJ won't care really. I feel sad, bitter, angry, and betrayed in a bit. But it is over. We start new. I love where the kids will be going. This will work out for the best.

Does your family know?

Does my family know that I keep a blog? I have never told them. If they found their way here, I have no idea how. This blog started off long before I was pregnant with LJ. I think I passed around the URL here and there but it went blank for a long time. Then I picked it back up. It wasn't so family could keep up with me. It wasn't to share hundreds of pics of my kids and tell everyone how I raise them or what sort of educational things we do around our house. Honestly, I needed a place to put my feelings out there. I want them to be read.....but not by my family. Strange? It is just too real for them to know how I feel about things. I have a hard time expressing or admitting being sensitive or struggling with my son's health. I am VERY good at being strong at the Dr's office...in front of families...in front of friends. It is when I come here and really just lay it out there that I cry. It is theraputic for me. My target audience is me. Though I hope that other heart moms can come here and sort of relate. To know their feelings are validated through others and to let you know that the "strong mom" in the room next to you on the cardiac floor isnt' as strong as you think she is.

Yes, there are nice CVS posts in here too. Why? Not sure. For a while my most read blog was about the Amazon diaper deal. So I figured that some of you are interested in that sort of thing and I kind of get my kicks on getting good deals here and there..I also think it helps to lighten the mood of this blog.

So for now, I don't advertize the blog. I don't mind if you link to me or if I am listed somewhere. But as for family???......I'll probably just keep this between you and me. A cutsie blog will be listed under another URL though this one really does need a few pics here and there ;)

To #3 or to not #3

And by number 3........ I totally mean adding another kiddo to the family. I can't believe I just put it out there like that. As always, I am conflicted. Here are the thoughts running through my head, in no particular order

My kiddos are getting so big. Kait will be 4 and LJ will 2 be in April. They are walking and talking and Kaitlyn acts like she Will be a legal adult soon.

I miss snugly baby time.

I miss being pregnant

I miss feeling a baby kick

3 kids would mean buying a bigger vehicle....even...dare I say, a minivan *gasp!*

3 kids would mean 5 more years of daycare

I love the delivery. Granted I never had a real delivery just c-sections but I do LOVE L.O.V.E those first few days..even if it was terribly stressful with a heart baby. There is just something about that newness...that feeling of brand new.

I loved my ob and midwife.

I would have to find a new OB and midwife since my insurance has changed.

I have to worry about having enough paid leave. Geez, grad school was great in that respect.

What if it is another heart baby.

How will my family/friends feel who have been trying like crazy to have JUST one and here I am trying to have a third?

Do I really want to give up sleeping at night?

How will we arrange the kids in their rooms? one would have to share with the baby and from experience, kid + baby in the same room was not always easy.

Traveling with three, especially a baby, makes it hard.

We want to start vacationing with the kids.

But LJ is my baby.......I look at him and see my little baby and I am not sure I am ready to give that title away. How can I take that from him?

Kait is an amazing sister and LJ LOVES babies.

Some days I feel like two kids are enough and I feel soooo complete.

Some days I feel like I have so much more love to give...I know it's there.

We did give away A LOT of our baby items.

we have to travel to see our parents and I feel like a big enough burden having parents bored the four of us....

Who doesn't love a baby?

Back and forth, back and forth. we haven't settled which way to go. I just keep feeling that if I didn't want another it would be a sure thing...that I would just definitely know and this thought of baby #3 wouldn't' keep creeping up...but so many reservations....

Walgreens

Walgreens has started (well started a while back) their own bonus dollar type of deal called Register Rewards.

The good side:

No card needed. The money back is printed up at the end of your transaction which means you can keep going back and cashing in on the same deal.

Walgreens has more convenient hours (ie I can go on my way to work since CVS doesn't open until 8 am and I am already at work by then).

The bad side:

Because you can cash in so much, the items sell out FAST!

Register rewards are only good for 1-2 weeks!! Yes you read that correctly. What that means is that you can't really stock pile them.

They do not typically have items where you get equal amounts of rr back. CVS typically has one or more a week.

The selection of items that have register rewards is quite limited and what you get back isn't close to what you spend on SOME things. Others are not so bad.

So here and there you can find good deals. Two weeks ago they had six items that were $3 with $3 back in rewards. The issue is these past two weeks, not really anything good with the rewards (ie buy a $10 get $3 back) and I am sure they planned it that way.

All in all, I will probably use them but not as much as CVS. Maybe keep $3 - $5 in rewards around but not more than that since it would be a waste of money. Hopefully they step it up a bit and it gets a bit better.

I shouldn't be this excited....

I shouldn't be this excited to get a new printer BUT I AM! Using part of our tax return we purchased a laser printer.

While they cost a bit more than inkjet (we paid $99 for a black and white) and the toner can be a bit more (I think around $90) I get about 1000 times more pages printed per toner cartrige. Why, you may ask? Two reasons. 1. Printing off worksheets for Kaitlyn. It might sounds too white-picket-fence-ish but Kaitlyn loves to learn. She does. I have to convince her to stop doing worksheets. I have found great things on line for to her to do! 2. COUPONS! Not only can I get my coupon fix in my Sunday paper but I can now find even better ones on line :) Makes me happy!

I might do coupon match ups on here but not quite sure. It's a lot of work, and to be honest, not sure if I can keep it up online.

I AM LUCKY

I am lucky:

My heart baby will be two in less than a month.

He hasn't been overnight at a hospital in nearly a year.

LJ is walking, talking, laughing, and playing with his sister.

LJ sleeps in his own bed, yes bed. No more crib.

LJ loves his momma. He always wants to be near me and snuggle with me. He can't get enough of me.

And while LJ is not as advanced as his peers, he is still advancing.

Did I mention, no overnight hospital stays in a long time?

Kaitlyn is growing up to be quite the young lady.

She is wicked intelligent.

I get to watch Kaitlyn read to her brother while he sits patiently by listening to everything she has to tell him.

I have a great pictures and video of both of my kids dancing their hearts out to Dance Central.

My kids are not on long term medications right now.

LJ's next appointment is for the ENT, not the cardiologist.

I have a fantastic husband who has been incredibly supportive and loving.

My days are currently not spent sitting beside at a hospital.

The sounds of beeping machines are just a memory.

I do not have any major medical decisions to make in the near future.

My kids have fantastic health insurance and I do not have to worry about what my kids' might need. They are covered.

At the end of the day, my biggest struggle is getting my kids to fall asleep...and that isn't a such a big struggle.

Last night, it came to me. I am pretty darn lucky. It is easy to throw myself and LJ a pity party. His life, our life, is not an easy one but we are incredibly lucky where we sit right now. It could be drastically different right now. Our lows could be even lower. My kiddos are both home and doing relatively quite well. We have quality family time and the love between us all is just so abundant. So I will take these moments and cherish them because it could all change...but for now, we are doing OK.

CVS week of March 6 2011

Not much is going on at CVS as far as easy extra bucks (eb). Nothing that I will be rushing out for.

If you like nail polish (of course this week after my daughter conned me out of some last week) is on sale. $3.99 each with $3 back. So makes them sort of like 99 cents.

Besides that, mostly just buy so many dollars of one brand of product and get so much back in eb.

There is a soda deal that isn't too bad 4/$13 with $3 back. We are pretty stocked on soda so I am holding off this week.

CVS week of Feb 28th

Sorry this is a late post! Like I said, just getting over the hump!

so colgate was on sale again!! $3.29 with $3.29 back...limit two! Picked up two. two coupons $1 off and 75 cents off! NICE!

They had a rotating brush that was $6 with $3 in rewards and I had a $3 coupon but they were sold out.

Kait stocked up on nail polish (not on sale but she is really cute :) )

Total was $9.XX had $8.2X in extra bucks so I paid 77 cents :) OH and I have $6.58 in extra bucks back. Yeah, that was a nice score. But the husband is getting frustrated at the amount of toothpaste we have. In this case, as with the rest, it is pretty much free with the extra bucks. I can and will donate them. I mostly get them so I can keep the extra bucks going as they expire.

So let's say I have $6 that will expire this week. I will buy 2 items at $3 that have $3 bonus back. I pay nothing and get that $6 back that will expire in a month instead of this week. Then I have the two items (typically toothpaste) that I picked up in the mean time, free. So those will be donated and I have my extra bucks to continue.

Over the Hump

Well it is past Wednesday but that isn't the hump I am talking about. It is that huge emotional ride up the hill leading up to and after the Dr's appointment/illness/any sign of my child's fragility. It takes a while, about a week, and then I am back to where I was before hand: not OK but definitely not completely defeated. I am looking forward to a weekend of nothing planned and lots of family time :) The weather is warming up and we have been hitting the park with the kids. OK, it is a bit chilly out but definitely a lot better than the bitter winter we have seen. There is promise of Spring right around the corner.

Now that our lives are settling down I can finally bring myself back to the my personal list of things to do. You know the list...the list of things you WANT to do but definitely get put on the back burner because, as you know, after you have kids, that list is merely optional. My list

organize my coupons again. I am definitely going to be searching for an organizer.

Post pics here...let's face it, it is boring without pics, right?

take more pictures. This shouldn't be optional but definitely I have been slacking.

organize birthdays! Yes, I have two coming up...LJ will be 2 and Kaitlyn will be 4 in April. We are contemplating an actual party for Kaitlyn. YIKES!

I need to buy a table and set up my sewing machine again. I love to sew, now I just have to make the time for it.

So here I am, transitioning into my "normal" way of life after the Dr appointment. Autopilot off!

Conflicted

Conflicted. That is just how I have been feeling. I walked out of the Dr's office with LJ and my mom just repeating "He isn't any worse...He isn't any worse...that is all I could really ask for.." I am not sure if I was reassuring my mom or myself more during that time. I felt conflicted. One side of me wanted his valve replaced ASAP! Justification being that I would know blood flow would improve and that the right side of his heart would stop enlarging. The other side of me was glad that we could wait a bit because seeing my baby go into surgery, bypass, and recovery is HARD and there is always a chance of losing him due to the process.

Deep down I want Landon fixed and I want it to happen now. I want them to fix both of his valves so that I can have some peace. But will it bring peace? Surgery itself is risky. Open heart surgery is not simple. You are talking about placing my baby's body on a bypass machines while Dr's work on his HEART .... one of the main organs of his body. The surgery could end up not being successful. LJ's body could reject the replacement. Even if it accepts it, he will be on medications for the rest of his life so that reject is less of a possibility. There will be future surgeries to replace the valves when they are not big enough for his body needs and the cycles starts over. HOWEVER, leaving him in the state he is in now causes side effects that could be detrimental to his health as he gets older. There is no permanent "fix." As the Dr says "There is no fixing Lj's heart. We can reduce the side effects of the heart he was given."

I feel like I am in a free fall. Waiting to see what the research will tells us. Waiting to see what our Dr will say next year. A year. 365 days until we can figure out what we can do to help LJ's heart. That is a long time when you want NOW. Even if surgery can't happen NOW, just knowing WHEN to expect it would be some small relief.

Emotionally, I do well when talking to the Dr and going through all the tests with LJ. I do fine walking into the hospital. Leaving the hospital is different. I have left that hospital under so many different circumstances that it just all hits as I drive away. I hugged my mom good bye in the parking garage. After I passed her on the highway on my way back to our home town, I cried my eyes out. I sobbed. Why was I crying? Overall, the appointment was better than I anticipated yet I couldn't stop. Scared. Terrified. Lost. Anticipation. Fear of the unknown. My Baby. He has no idea. To him, this is his normal. Every kid goes through this, right? One day, probably next year, I will have to explain this to him. He will want to know WHY he is going to the Dr. Why are they running tests? Why does he have a scar on his chest when his sister (and no one else he knows) does? How do you tell this to a child? And when surgery time comes, how do you explain to them NOT to be afraid because, as a mom, I will be terrified??

As good as it could have gone

LJ had his yearly check up Monday morning. My first fear was the EKG and Echo. Both require quite a bit of cooperation from a near 2 -year old. I was scared as the tech was putting on the EKG pads (little sticker things that they hook leads to). LJ was no fond of having 15 -ish stickers all over his chest but he did quite well. The the echo, while only requiring three leads, takes quite a bit of time. LJ was PERFECT. He sat there, relaxed, and watched Dora without moving one inch the entire time. Hands down, best echo behavior ever! Then it was off to wait for the results.

5-10 min later a dissheveled looking man walked in, Dr Canter. Great man :) Looks are deceiving. "It's not good" He said. "His heart is leaks a lot" Meaning his valves are not letting a lot of blood flow into his lungs.

"not worse, right?" Was my reply.

"Not worse. But not better." He returned.

Phew. Before he said that my stomach was on the floor with thoughts of a surgery soon to follow. He put my mine at ease. You see, research in pediatric CHD's has come a long way in the past 20 years. A very long way. Kiddos that were as severe as LJ are finally reaching 30 years old and what they are figuring out from data is that replacment before our anticipated time frame is too late. There are side effects to waiting even if the body is holding out well. By holding out, it adjusts the way it pumps blood which can lead to further complications later in life. And that is what they are seeing. He stated that what our plans are for this year won't be the same as the plans made in the next few years.

For now we wait. His body is tolerating his condition well enough to thrive. However, the right side of his heart is enlarged and nothing can change that now. His other leaky valve is something we will address once this pulmonary valve is replaced. Pacemaker is questionable right now.

There is a new procedure to replace the pulmonary valve without open heart surgery. It is being done now at St Louis Childrens. It is for much older kids...LJ is not a canidate for now. But hopefully by the time he is ready for replacment, this technology is at a place that he can be a canidate.

So we continue in our holding pattern. My thoughts on this? Well I have to go for now but I will address that later. Please ignore all spelling errors I am in a hurry but wanted to get this out.

It's that time

Landon's cardiology appointment is Monday. He hasn't been back since last February which is great. He has been sick between then and now. He has had echo's and xrays but nothing seriously enough to bring us back to St. Louis Children's. I knew that nerves would get to me but I didn't think it would be this bad. It reminds me of the days leading up this open heart surgery: walking around with an uncomfortable feeling in my stomach, crying here and there, squeezing him extra tight. LJ has yet to have an appointment where his heart function was where the Dr's wanted it to be. Failed balloon catherizations, high pressures, etc. Then we found out last Feb that his surgery wasn't completely successful. Instead of restricted valves, they are too loose. The efficiency of his heart will continue to drop until it is obvious that surgical intervention is needed. I am not sure I am ready to hear for certain that the function is dropping even though I know it is. For some reason, talking with the Dr's about his condition makes it even more real. Don't get me wrong, I feel the "realness" everyday but for some reason, in a hospital setting, it just sets in more. So does sitting in a waiting room of heart kiddos, some in good shape, others not.

Anyway, I am nervous. Functioning today at work is taking everything I have. I just want to jump in my car and be in St Louis. Just that small step bring comfort. I am sure I will update here Monday night (or Tuesday, depending on timing). Until then, here is a beautiful poem that I snatched up from a good friend.

A CHILD LOANED


I'll lend you for a little time
a child of mine," He said,
"for you to love the whole while he lives.
It may be six or seven years
or twenty-two or three,
but will you, till I call him back,
take care of him for me?"

"He'll bring his charm to gladden you,
and should his stay be brief,
you'll have his lovely memories
as solace for your grief."

"I cannot promise he will stay
since all from earth return,
but there are lessons taught down there
I want this child to learn."

"I've looked this wide world over
in my search for teachers true,
and from the things that crowd life's lane
I have selected you."

"Now will you give him all your love
nor think the labor vain,
Nor hate me when I come to call
and take him back again?"

"I fancied that I heard them say
'Dear Lord, Thy will be done,
for all the joy the child shall bring
the risk of grief we'll run.'

'We'll shelter him with tenderness;
We'll love him while we may,
and for the happiness we've known
forever grateful stay.
But should the angels call for him
much sooner than we planned,
We'll brave the bitter grief that comes
and try to understand.'"

*Edgar Guest

Gymnastics Update

So LJ has had about three classes now and seems to enjoy himself. :) He definitely isn't as focused as Kaitlyn was but he does have fun. He tends to wonder off more (which is OK in the tot class) than to stay on the mat during group time. He loves to climb on EVERYTHING! He isn't a fan of the bar except the low one to swing on but he does enjoy it. And he LOVES the balance beam! Anything else? Forget it. He rather just climb. At this age, as long as he is having a good time that is all that matters. Then "IT" happened.

There is another boy in Landon's class who, by what I can tell, is about two months older than Landon. He does have quite the vocabulary. Landon likes to follow him around a bit. I could see the mom...sizing up Landon. LJ is quite shorter than the rest of the class (he has always been quite the nugget, only 19 inches when he was born). With his delay in language and some gross motor it would be easy to confuse him with a much younger child. Then she asked it..... "How old is he??" She might of just said (at least in my mind) "I noticed that your child is much more delayed than mine but since they are in the same class I would imagine they are the same age. So go ahead and tell me how old he is so that I feel better that my son is progressing better than yours....." OK, she might not of had those intentions when saying it, but that is what I hear.

I knew it would happen. It is obvious that LJ does not contain the same set of skills as the rest of the kids in the class. The range in the class is rather large (20 months - 36 months) but LJ is definitely the shortest, definitely the least verbal, etc. I know he is fine. I know he is doing great. But when someone asks me how old LJ is, in this context, I want to start off with the fact of WHY he is delayed before I even get to how old he is. But I don't. I just told her that he will be 2 in April and LJ ran another direction. As I went to follow, she leaned over and said something to her husband. I boiled.

All that matters is that LJ is having a good time. I just have to remind myself of that. He is happy there and it is our special one-on-one time together :) Can I just get several t-shirts made saying "I am a special heart kid! I am my mom's hero!" and make him wear them everyday ?? Really, it would just make my life easier mentally :)

That's My Kaitlyn

I wanted to post about the family reunion but for some reason this memory of my daughter came up . There are just some stories that just define her...that when I think of them, I think "yes, that is my Kaitlyn." And this was one of them.

I made a few friends in graduate school. One (and still is a dear friend) was also a labmate, Zakiah. Before I go on let me point something out. I am white as is my wonderful husband. We always joked that our children don't stand a chance as we both have a complexion that would put a freshly painted picket fence to shame. Also known as pasty. And we did bless our kids with the same complexion. As a parent, you wonder how your kids perceive different races/colors. Zakiah is black (and incredibly beautiful, by the way). She is one of the happiest, most optimistic person I know. She is heavily involved in her church. She has such spirit and shine in her that you just smile when you see her. Zakiah was over one afternoon as Jim and I had to step out for a few hours (though I don't remember why). This was definitely not the first time Kaitlyn has met Zakiah but it was the first time they had one-on-one time. Kaitlyn made friends with Zakiah super fast. In fact, she still constantly asks about "Kiah." We came home and Kaitlyn was was sitting with next to Zakiah, captivated by what ever book they were reading. She interrupted with "Zakiah?"
"yes....." was the reply.
"you're brown"
"yes I am."
"ok!"
and they finished their book. That really is my daughter. She really does like to voice her observations but takes them all at face value. She stated it out of pure observation and nothing else. It meant nothing more to her. And the smile on Zakiah's face when this big revelation happened was priceless as well. I think I will always remember that moment.

CVS week of Feb 20th

We had an amazing weekend at the Wilson family reunion. That will be a post for tomorrow (ie I have the day off and the kiddos will go to preschool) when there is more time.

I headed to do my CVS weekly shopping.

What I took advantage of

7up/A&W/Sunkist soad 3/$10 (already a good deal) with $3 bonus back

Small package of cabury robin's eggs 75 cents with 75 cent back

jelly beans 99 cents with 99 cents back

starbuck frappuchino 2/$4 (it was along weekend, we needed it) and i had a $1 printable from the cvs kiosk from last week

colgate total $2.99 with $2 bonus back (bought 2)

Total was $24 (and some change) used $14 from bonus last week. Total bill was $10 (and some change) with nearly $8 back for next trip. SWEET!

at the kiosk (what printed out today) $1 off $5 cough/cold items $2 off reese pieces drops and minis (which I have a coupon for)

CVS this week

Kind of good deals going on this week. I hit up CVS on Sunday.

Coke products (12 packs) were 3 for $10 a good price to start with. But there were $3 bonus back

My husband's Speed Stick was $2.99 (typically $3.30 at wal mart) but with $2 bonus back

Colgate Total was $3.79 a piece (not a great deal) but $3.79 bonus back.

I had $5 bonus from previous purchases.

So my $22 purchase was $17 and I now have $13.98 bonus back. Not bad.

So here is how I saved: See the toothpaste? I got equal amount of bonus bucks back. So if I use that $3.79 on something that I would typically buy at a good price (say it was $4 ish) then it is like I got the toothpaste for free. And since I could buy two of them...I have two free ones :)

Why do I???

Why do I feel so disturbed when someone tries tell me about a child who is worse off than Landon? It kind of angers me. It might be because I feel that they don't truly '"get it." They don't realize what we have been through with him or the uncertainty in his life. I completely understand that there are a lot of kids who are not doing as well as Landon. Or whose hearts are worse off, or who are going through cancer, or who are terminal. I get that. I know it. I guess I feel that if they truly understood it from the perspective that I have, they wouldn't even mention it. I mean, it is really fair to compare sick kids? I feel angry when it happens. I feel like I need to counter them, but I don't. I feel as though they are devaluing Landon's experiences.

Why do I feel so compelled to read every heart baby blog? And not just heart babies, other critical ill kiddos. Let's be honest, there is not always a good ending. And yet, I read on. Constantly reminding myself that there are babies who are not as fortunate as Landon, whose battles have ended much sooner than any parent would choose...It's nearly torture. OK, it is torture. But I can't help it. I just do. I add to prayer list. I cry tears that the other moms may never know about for their child.

Why do I feel like everyone must know about my boy? Is it because I want attention for myself? or for him? No, not really. But I am really proud of my boy. I really do want everyone to know just how special he is and just how much he has already gone through. I don't blurt it out everywhere......but I want to.

Sometimes I feel like I would like to take a step back and remove myself from the heart community that I love. And it isn't because they have done anything wrong. It is great to be connected to other heart mommies. The support you get is UNREAL and UNMATCHED. However, I feel as though my heart becomes so overloaded with others situations that I am not taking in everything I should. But then I feel awful for even thinking about.

These are things I never even thought about before knowing of LJ's heart. These are definitely not the things I thought I would ever have to think about or that I would even consider thinking about. Crazy how so much changes that you never thought would when your son becomes a statistic......... 1 in a 100.

Anton and my softness

I love babies. It's true. I would foster a million babies if I could. I would love to open my home to babies/kids that just don't have a loving/stable home. I am just built and wired that way. I want to reach out and bring them close and let them know someone does love them. Then a link came across my view about Anton. Anton and his twin brother were being carried by a serogate mother. When the twins were born it was clear that Anton had a skin disorder called Butterfly Skin. He bruises upon touch. He is sensative. His genetic parents picked up his brother and left Anton at the hospital where he has remained. This tugs at my heart strings more than I can even express. This boy is left swaddled in his crib all day long. To find more details, go here

http://www.helpanton.org/

I want him. I want him in my home and I want him to know love outside of a hospital. There is no cure. But he has the same chance to live a long and happy life just a more careful one. His chances of adoption in Russia is so minute. I will be thinking and praying for his boy constantly.

Tolerance

We got quite the bit of sleet (4 inches) and snow (4 inches). The roads are pretty clear but still are a bit slick. I had happily dropped the kids off at preschool and was headed to work this morning. I sat at the intersection, waiting to turn onto a busy road. Now, I do not live in a big city. It is an ok sized city, more suburban than anything. Typically I don't mind whipping myself into the lane that I am trying to turn onto but when things are icy, I try to wait a bit. Mostly because if another car is coming, they might not get to slow down on the ice. So there I sat, waiting for a decent turn when the guy behind me LAID ON THE HORN! Let me also add that I was there less than a minute. A few seconds later a decent turn came so I took it and the guy behind me whipped out also, about 2 inches from my back end!!! Seriously, guy?

So we were at a light immediately after the turn. Half of me wanted to stick my arm out the window and give him the one finger salute. But that is just rude and I wouldn't want kids to see that but I was kind of angry. I then wanted to get out of my car in that standstill and knock on his window. "Excuse me sir, but you don't have to honk at me. I feel I waited an appropriate and safe amount of time before I had to turn. " I didn't. Just sat there.

So we turn....he enters into the other lane after the turn and takes off. What bumper sticker do I see on the back of his car....wait for it....this is classic..


TOLERANCE!

Yes, Tolerance. That is what it said. Then next to it was a nice bumper sticker with "coexistence" on it.

Nice, dude. Nice.

To Save A Dollar, A new adventure

So I am going to try something out. CVS. It's a pharmacy/overpriced convenience store. What could it possibly do for me? CVS bonus bucks. I think that is what it is called. What it is, is money that they give back to you in the form of store credit when you buy certain things. How can this work for you and me is something I am investigating.

Step 1 of this process was going to CVS and filling out information to get their card. It costs nothing to get this card. Basically they like it because they can track your buying patterns and get data for themselves. It works for US because you use it to get sale prices at their store.

BE AWARE! Sale prices at CVS are typically the price you would pay on a regular day, say at Walmart. But there are a few scattered in there where it is a good deal no matter how you slice it. The goal is to look for the deals that are equal to or better than what you pay now, easy right?

So let's take an example from last week. They had a sale 5 -12 packs for $15 and then you get $5 bonus bucks back. So 5 -12 packs for $15 is a good sale anywhere. Walmart price on a 12 pack is $4.28 and here it makes it $3. We drink soda regularly so this is a good deal. PLUS it gave me $5 on my next purchase which is also a great deal IF YOU USE IT ON ANOTHER GOOD DEAL. Use it on something that is regularly priced and you get no deal really. That day I also purchased mouth wash for $3.99 and got $3.99 back in bonus cash. So if I use that $3.99 to buy something that I normally would buy at a price that I normally pay (or less) then it is like getting the mouth wash for free, right? GOOD DEAL! So I walked out of that store spending $20-ish dollars with $8.99 for something else.

NOW, this gets better. I hope not more confusing. So let's say there is a good sale on something you normally buy. PLUS you found a coupon (online, in the news paper, etc). EVEN BETTER. you still get the same amount of bonus money back no matter what you take off using coupons. NICE, huh?

Want it even better? CVS has store coupons. They can email them to you. They have a kiosk inside the store that, if you scan your card, will shoot out store coupons. You can put these coupons WITH manufacturer's coupons (ones from the newpaper) to save even more!! In some cases you kind of make money. Example

Product A is on sale for $4 plus you get $2 bonus cash back
You have a coupon from the newpaper for $2 off
You have a store coupon for $1 off

In the end you pay $1 but walk out with $2 in bonus cash ....so really you are up $1.


OK, this is enough to make your head spin for a while. I will probably go more into detail as this works out more. But as for now, I have spent about $45 on about $100 worth of products that I USE! I also want to say that I am now completely stocked up on shampoo that unless another ad comes out where bonus bucks equals the price, I will not buy more shampoo for a while. Two back ups is all we need for a good 4-5 months.

** I really want to make the disclaimer that I only buy things that I use. I don't buy things just because I get bonus money back. That defeats the purpose. I do not want a house full of things I can't use. I really suggest only buying things that you typically buy. **

The Snow Frenzy

We (a collective "we" of the midwest) are about to experience a lot of snow/ice. It really is all I have heard about for the past 24 hours and probably all I will hear about for a week. Me? I am totally done with the snow. The first snow came early this year, the first week of December. Typically we don't see a good snow until mid January. I have seen blades of grass maybe twice since the first snow. I. AM. DONE. Yes, it is pretty. But once you have young children who are mobile, it is not fun. Why? Because your child needs to burn energy and having no place outside to do that is HARD. They get bored. They get cranky and that is contagious to parents. My kids are ready to play outside for an extended period of time, and rightly so. I am ready for the spring. Maybe constantly thinking that is just bringing more snow. My boss secretly told us to bring our computers home and consider working from home tomorrow. Hubby will still have to go in. Is it bad that I am contemplating having him bring the kids to daycare tomorrow on his way? He has 4 - wheel drive.......

I also think it is kind of funny to watch everyone run out to the stores and buy enough supplies to last until Memorial Weekend. Yes, there will be alot of snow, but the midwest is used to it. It will take 24 hours to clear the roads and everything will be fine. I did my weekly shopping yesterday and all the crazies were out. (sorry if that was you). It definitely made the trip twice as long.

Did you notice pictures are still lacking? I have two explanations for that and one is 3.5 and one is 1.5 years old. Bedtime has been less than pleasing, a post for another time...probably tomorrow. But with any glimmer of hope, there might be pictures posted tonight. Hubby if off playing basketball and the kids have no mercy on me.

Diaper Deal

Do you have one (or more) in diapers? While I am a HUGE fan of cloth diapering, I had to give it up when my son hit solids and I lived in an apartment (not washer/dryer of my own and NO WAY can I save up diapers the entire week when I would hit the laundry mat).

So Amazon has a fantastic club you can join called Amazon Mom. It is free, no strings attached. It gives you 15% off of diapers. Now get this...if you subscribe to get a shipment of diapers (one box or a million boxes) every 1, 2, 3, etc months, you get another 15% off!! Nice, huh? Want it to get better? Do you get American Baby magazine or Parenting magazine? There is a $10 off or 20% off coupon in there for Amazon diaper orders! Want it even better?? FREE 2nd day shipping on any Amazon Mom order!! So here is what I bought

120 Diapers to be delievered every two months for $23 and some change. BUT I had the 20% off so I get the first shipment for only $16!! SCORE! You can cancel the shipments anytime you want so you are not in a contract to buy for an entire year.

For some reason I can't post the address in here but if you go to Amazon.com and search for Huggies or Pampers diapers you can find the diapers you are looking for. Under the short description there will be a blue box with details.

I was "that" Mom

Hubby got a nice surprise bonus at work. Off we went to the local Mexican restaurant that we have been going to for years. When we started having kids, they would take them and walk them around the place so we could eat. They tend to hand them free things like candy or food. It is a good place and we enjoy going. Out kids PIG OUT on the rice and the chip with cheese dip. It really is a special treat for them. Like any respectable Mexican restaurant they have candy for sale in the front. If the Kait is good, she gets a piece (LJ isn't quite old enough yet but he has been known to sneak a few bites of my peppermint patty). There, the scene has been set....and some of you know where this is going.

If any of you ever had/have small children, you know that eating out can go incredibly well or incredibly not. Kait, like most 3.5 year olds who are excited, does not sit still very well. She was getting up and out of her chair and I kept reminding her to remain in her seat. So I did it, the warning "get out of your chair again, and you get no candy (laffy taffy)." I told her to look at me and said again " I am repeating this because it is important. Get out of your seat again and NO CANDY!." There, the rule was set and I was going to have to follow through, something that takes a lot of will power for me to do because, let's face it, I love making my kids happy.

About 3 minutes goes by and that girl was out of her seat. "Remember what I had said? You are now out of your seat. No Candy!!."

Enter hysterics. The lip comes out, tears well up and that long initial draw of a cry starts. "But I want candy." Stick to your guns.....stick to your guns..... "No 'mam. I said that if you got up, there would be no candy. So, no....no candy." That didn't really fix it. Instead she just started screaming, without a break "I want candy, I want candy, I want candy.." I knew what I had to do.....for the first time EVER I was going to have to remove my child from a public venue to do a tantrum.

That girl fought with all she had. Her little hands grabbed onto that door and seemed to be super glued. I had to remove each and every finger so I could get out the door, the entire time with her screaming and squirming so much I was worried I would end up just dropping her. She screamed the entire way to the car with people on the inside staring out at me... That mom... who can't control her child in public.....who has a spoiled child....who doesn't have her act together....who has a sugar crazed kid..

I placed her in the car (which was no small feat considering she was alike a cat being placed in a bathtub, arms and legs spread out so that she didn't fit through the doorway.), belted her in (in the process having to remove her shoes because she was kicking), and shut the door. I REALLY wanted to sit in the car. It was cold out...but my ears couldn't take it. I would open the door here and there to remind her that if she stopped screaming I would sit in the car with her. She didn't care for that option. Instead I stood by the door watching people walk by seeing my child screaming in the backseat of a car, and me, standing there and doing nothing but letting her get it out. I would smile as they pass, and you know what? I could tell who had child experiences, they smiled back. They knew. I wasn't a horrible mom. My kid is not a spoiled brat. She is not sugar crazed and is probably a pretty darn good kid. What I had was a child under the age of 5. Period. No other explanation needed.

I am the same way. When I see a mom struggling with a child (or several) in public and I can tell she is starting to feel stressed and embarrassed, I flash the "I understand" smile. She smiles back. Like a secret mom handshake.

Know what? That girl slept that night the best she has slept in nearly a week. As parents we felt good knowing that we followed through, she understood she was being reprimanded for her behavior, and overall, it turned out fine.

Have you had this experience? Feel free to share :)

I can't do it.

I wanted to get on here and tell you about my day. About not feeling well yesterday and the fight that my kids put up going to bed. That all changed when I turned on the computer. Another heart baby has been called home. 5. That makes FIVE heart babies called to Heaven this WEEK! WEEK! Not Months...ONE SINGLE WEEK. How do I light heartly talk about my evening when my day started like this? The tears start and will most likely continue through out today. I never held these babies. I never personally spoke with their moms. Heck, their moms probably have no idea that I sat in front of my computer rallying and praying for the little ones from afar. And yet I grieve for their loss. My heart aches knowing that they will no longer hold their child as I hold Landon everyday. Hearing the words that your child has a heart defect is hard. You feel so alone. You Google yourself to depression. You feel helpless. But then something happens. A fellow heart mom finds you or you stumble into a forum of heart moms and you realize something, you aren't alone. There are more out there like you thank you realize. They rally for each other. They pray for each other. They celebrate the good, mourn for the lost. Suddenly you feel surrounded in a tight community, most made of people you have never met and may never meet. For this I am greatful for when there are weeks like this, I know there are million prayers of peace being said.


.....I have to admit, selfishly I cry for myself and Landon. For this really reminds me of how fragile his life is. Somedays it is easy to forget it when he is full of such laughter and words. I remember he is sick but I am able to push back the possibility that he, too, may be called to Heaven before I am ready. Tears full of sadness....self-less and selfish. I can't help it. However, I think if everyone had to experience this once in their life, to know how cherished and fragile a life could be, this world would be a more loving place.

Missing Something

So this place is missing something....

.....Pictures! I really need to get pictures of my sweet little ones on here! They are, in my unbiased opinion, rather cute. The good ol' hubby is playing basketball tonight. So, if my kids are nice to me and go to bed reasonably, I will post some pictures tonight. However, my dear 3.5 year old daughter tends to be rather dramatic at night and the entire process can pretty much take all night. She is going to be a great actress one day, make great money, and support me. So I will take the abuse now so that I can be her agent later on and live in a sweet house. Dreaming? Probably but that doesn't mean she isn't a great actress right now ;)

Stop Googling? Wish I could...

So what happens after you leave the OB's office with a prenatal diagnositic of your unborn baby? You turn to google. I remember it well.

"large right atrium"

It was the first thing the Dr said. Baby LJ was not in great placement for further evaluation so we would have to return. But we were sent way with the note that his right atrium is enlarged. They didn't say what it could mean and off we went. It didn't really hurt so bad because the Dr said he couldn't tell why or if it really meant anything at all. We went home. I googled. What did I find? Nothing conclusive. Everything from "nothing at all" to "still birth." Two weeks later the first real diagnosis was made....Ebstein's Anomoly. I couldn't even remember what they called it. I was a bit more in shock. "It's real....It's there." I do remember those words. I go home and call my regular OB where they tell me that it is Ebstein's and that they want me to go in later for a birth plan as my hometown was not equipped to deal with heart conditions.

I turned to google....and cried. I read over and over.... "the younger the person is when diagnosed...the worse off they are....with prenatal diagnosis being severe." "low chances of surviving birth or the first year." "lifetime of surgeries." "increase chance of stillbirth.." It was hard...but I kept reading. I was told to "STOP GOOGLING!!!" but I couldn't help it. I felt like I needed to know every last thing there was to know about it. I felt like the Dr's were being a bit too vague. How could they not give me exactly how this will go for me and my baby??

LJ was born. He did survive. He did have surgeries and a few complications (added diagnosis of pulmonary stenosis) but for some reason I stopped googling after he was born. Somehow, all the negative outcomes faded. He was all I needed to know that we were OK.

I admit it. I "googled" last week. I googled ebstien's. Why? Not sure. There it was. All the negative outlooks. It was scary. I cried. I cried a lot. The research was sitting in front me of and I couln't push it back in my mind. Was it good for me to remember all of this? Did I need this to really grasp all he has been through and what a miracle he is to me? Maybe. All I know is that it might be awhile before I google again but I am sure it will happen again.

My advice: You can tell someone to stop google, but they won't. For some reason they need to. I dont know if it is a gain of control or a grasp of reality when you feel like everything around you crumbling....but it will happen. Just make sure it is educated googling.

Couponing

So to get off the heavy stuff. Let's chat about saving money and couponing. I love coupons...I really do. IF they are for what I want/need. I get a big thrill out of seeing the money I save when I use them. Even if I only save $2 a week, that is over $100 a year! But I have a beef with coupons and those who use them. I have seen those who extreme coupon! You know...the people who get $300 worth of groceries for like $10 (ok, a bit over exaggerated, but not much). But here is my question....

How much of that do you need and use? How much of that did you buy because it was a good deal? How much of it was neccessary? How much of that will just sit in your house and ever get used? How much of that food do you actually want your family eating??

Can you see where I am going with this? I was reading up on someone who coupons...bragging about the stash she has of everything in her house. And we are talking like more than 10 of one particular item! She then went on to say that she had to eventually put some of it in a garage sale and something tells me that she didn't get her money back. Do you need 10 bottles of shampoo in your house? Is the shelf life long enough that you can keep it like that?

I see that a lot of my consumer goods coupons are for candles, air fresheners, etc. I have do have air fresheners in the bathroom. It is obviously there will be a point that it will smell. We have had the same can in the bathroom for well over 6 months. At that rate it would take me over 5 years to use 10 bottles!! NO THANKS!

I think the hardest problem I have is with food. Everyone wants to save money on food. But there is also a compromise of the nutrition. I see an overwhelming amount of coupons and sales for pizza, breaded/fried items, etc. Things that I really try to limit in my house. I am not perfect. YOu will find brownies here from time to time. We have chips. We do eat pizza. But not at the rate one would have to eat to dramatically lower my shopping bill at the end of the day.

So I guess what I am trying to say is that I have a hard time saving extreme amounts of money due to the restrictions above. I really have one or two stock of the things I use all the time. I make sure coupons of things that I definitely use (diapers, peanut butter, granola bars, laundry detergent, etc) never expire if I don't have a few back ups. I tend to toss coupons of things that I dont' really care for in my house. If I want chips, I will pay full price (or the store sale price) because that is the price I pay for bringing something unhealthy in my house (and we do get chips). I buy genertic where i have tested and found to be no difference. I buy meat in bulk, divide and freeze, free overstock of anything I can, double up manufactor's coupons with store coupons, etc.

That being said, I saved 41% on my last grocery store purchase :)

He doesn't look sick

If you really wanted to make my blood boil and tears come to my eyes between the dates of April 3, 2009 (LJ's bday) or about Feb 2010, you would have said the title of this post. I heard this alot after LJ left the hospital. By all accounts, if you looked at him, you would have no idea he was sick. He was 1 oz shy of 8 lbs when he was born a month early. He has big bright blue eyes and just really handsome (see below).

I always thought "that is a terrible thing to say...he is sick...he is pretty darn sick at that!!" It made me angry. I am not sure if it is because I felt they didn't grasp the intensity of his defects or if it just a constant reminder that he is sick. It was (and still is hard) to explain Landon's condition enough where the intensity was understood. Many are under the assumption that Landon will be or is fixed. That he is fine now that he had surgery. "Boy, it sure was scary when Landon was going through all of that...I am glad that is behind him now." Ouch. Again, it hurts, because he will never be "fixed." There is nothing that a Dr can make his heart better to the point where we will never have to worry ever again. Everday will be a contact check within my mind. How does he look? Anything blue? How is he breathing? Is it faster than normal? Wonder what his oxygen levels are? He will constantly be monitored and checked. Sometimes days will go by , sometimes weeks, before I will be reminded that he is more fragile than he will ever look.

Things have changed a bit since Feb 2010. The phrase "he doesn't look sick" doesn't quite anger me as much. I feel kind of happy about it because he DOES look great. He IS doing well right now and it is great to see. But it still stings. Only because it brings my head out of the clouds....I will alway say to myself "but he IS sick...he always will be."

I have an entire other post (maybe more) on the many things people have said that really aren't as nice...you would be suprised the comments that arise when you are due with/or have a sick child.

I just want to blurt it out!

Kaitlyn has been in some form of gymnastics since she was about 21 months old...the same age Landon is now. She loves it and I like that it helps build her gross motor skills. I want the same for Landon. I am going to sign him up at The Little Gym. I am excited to do this with him but I worry. Why? Let me tell you.

Heart babies can fall behind in gross/fine motor and speech. They spend a good deal of their life recovering...from catherizations of the heart, from surgery, from illnesses that hit them harder due to a weakended state, etc. They are just behind and I am totally OK with it. I am overjoyed at every small milestone he hits due to the same reason he is hitting them late. The fact that he is here with us on this Earth and hitting milestones, whenever it is that he hits them, is a miracle unto itself and I cherish them all. HOWEVER, it is hard when LJ is around a bunch of kids his age and the difference really shows. LJ doesn't care in the least. He is thrilled. BUT it bothers me. It shouldn't but it does. I feel the parents noticing his lack in skills. I feel them evaluating me as a parent. "I bet that kid sits in front of a TV all day." " I bet she works so much she barely takes time with her kids." Irrational? TOTALLY! Can I stop it? No. I want to rip off his shirt, show off his scar and show them all exactly everything he has been through. I want to share that he has been through more than people go through an entire lifetime and he isn't even two. I don't want the sympathy but I feel like I need to explain his past to everyone so that I don't feel judged. I also want them all to know so that they feel as proud of him as I do. That he now says "momma" feels a million times better than it would have had he not been through all he has. It's my own complex.

I will sign him up. I will take him. I won't rip his shirt off. I am sure it might come up eventually in small talk with other parents since it is a parent/tot class but I will sit back and try to enjoy the fact that my son is HERE. And not only here, but not in a hospital right now. Not hooked up to machines, not getting echos, not getting poked. He is HERE and enjoying running around like a toddler who has drank an entire can of Mountain Dew (no, he does not get soda or nor caffeine, this kid doesn't need artifical energy).

Yep, that's all.

What will be here?

So I struggle with what I will write about here....well more along the lines of which way will this blog go? Should I allow friends and family to know about it? In that respect I would feel inclined to write about what we do as a family, post pics of the kids, talk about the small ups and downs our family is going through on a daily basis. Could I really write how I feel? I would worry about hurting feelings, or sharing too much, or showing how hard somethings have hit me going through life. It is hard for me to let those who are closest to me know about struggles and things that bug me. What if they did one of the things that bugged me? I don't like hurting feelings. Should I blog about the fun craft things I do? I do love doing crafty things! Should I blog about the thrill I get out of couponing and finding good sales?? Do I blog about how hard it is being a mom to a heart baby? Do I blog about how hard it is to see friends losing their heart babies all too soon?

So I am torn what I should do. For now I will write. I don't quite know when I will let it be known that this blog exists. So if you are looking for what will actually be written here, I HAVE NO IDEA YET!

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.