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.