Tuesday, December 22, 2009

Time out- Potty Break!!

13 days and counting until Lily's cardio consult. Try as I may to bump the date closer, that was a no go. Dr.C is out on vacation until the 4th, and we can not forgo the consult, which to me is beyond frustrating. Especially when we already discussed what was going to be happening last year, right after Lily's 3rd OHS. When we talked we all knew what this 4th surgery would bring, and what would be happening. Even Dr.Rhee said, we know what needs to be done, we just need a date now. Try as I may, I could not get out of the consult, ugh. So like I said, 13 days, 13 days until we sit and discuss the fine details of the surgery, the survival odds, the recovery, what our future will look like afterward. Nothing I haven't already heard, but must hear again in order to get a date. I will be pushing for surgery by the end of that week. I know some may think we are crazy for pushing, but I am a little unsettled up here in Anthem, 30-45 mins away from St.Joes, and if he valve was to blow from the pressure, well, we would have no chance of her making it. So I am not at ease up here. From everything I have read and cross referenced, any gradient over 100 is sever and needs surgery as soon as possible. Her heart is full functioning right now, minus the valve, and I would like to keep it that way. I don't want it working any harder then it needs to.
I am Lily's best advocate, I can start seeing little signs of exhaustion. Where her eyes don't have the twinkle and brilliant sparkle to them. They seem dull, along with her personality when she gets like that. But they are so little, unless you know her, you won't catch it. If I were to take her in for it, they would look at me like I was crazy. But like Chris said, you can tell something is wrong, this isn't how our daughter acts. So I may have to become one of those parents the doctors all hate, the ones where they go, "It's her again." I have been real good about it, up until now. Now mama bear has come out to play and will do anything and everything needed to get this show on the road.

on the upside of all of this chaos....Lily went pee pee in the potty. My 21 month old little girl, came up to me, pointed at her diaper and then pointed to the bathroom. I asked her if she wanted a new diaper and she said no, but she grabbed my hand and took me to the bathroom. Once there I asked her if she needed to go pee pee and she said, "yeah." She lifted her dress so I could take her diaper off. I put her up on the potty and told her this is where big girls go pee pee. She kept pointing towards her's and I told her yes, that was her pee pee. I didn't actually expect anything of it, but just let her sit there. Well, low and behold, i hear, tinkle tinkle tinkle. She looked at me and smiled, but all the while she held onto the potty for dear life. I clapped for her and gave her a hug when I got her down. It is unfortunate she shows interest now, because we will regress because of this surgery. After her second birthday here in Feb, I do plan on getting her, her own little potty. I am determined to have her potty trained by 2 1/2 like I did with the boys....... on can hope!!

Love Hugs and Blessings

Friday, December 18, 2009

Surgery Consult scheduled

The H&L Institute called today and Dr.C is clear booked until January 4th. Which make me stressed but understanding. I know Lily's heart is stable enough to handle waiting, but the gearing up and house preparation's, kids, and husband situation, very stressful. Chris usually stays home with the boys if we are in the hospital longer then a week, but trying to figure out what to do with them during the first week is the stressful part. We have never had Lucas in school before and had to try to work around it. I will not be leaving the hospital at all for the first week. We are prepared for 2 weeks because we are told it usually is a 2 week recovery time for valve replacements. I just need to make sure, there is enough things for Chris to make the boys, because lets face it, unless it has directions on the box, there is no cooking it for my husband. (Sorry honey, I love you, but you are not Mr. Betty Crocker in the kitchen) As many heart parents are aware, the weeks following up to a surgery are nearly as stressful as the surgery it's self....nearly.

Anywho, off track here, consult will take place at 3:45, we will just review what we already know, but it is procedure that has to be followed. Doubt anything has changed in the game plan, but just a refresher for all of us. After the appointment, we will meet over with Juanita and schedule the surgery, which usually takes place within a week after consult. So, I will keep everyone updated. Sorry about the long post previously, I just wanted to get all the medical info into it.

As of right now, Lily is sick, I do believe she has Hand Foot and Mouth, which if any of your children have had it, blah, not lovely at all. Her tongue is covered in white, looks like yeast but there are now little red spots on her tongue. She is running a fever and is VERY cranky, not our normal perky princess at all. I am just hoping she will be ship shape for Christmas. I got her a bunch of princess jewelry, my mom spilled the beans and told me she got her a tutu and a crown, my mom and I can't help but get excited over girly Christmas presents. I am trying to rack my brain for stuff I can get her to bring to the hospital but will still be fun to play with when she is at home. I am thinking about some doll clothes because she loves her baby and loves its' clothes to be changed often. I will wrap up shopping this weekend, ugh, right now we have 6 days until Christmas, I never leave my shopping undo this late, but fiances have been horrid this year, but as we all know, presents don't make Christmas, family does, that is all that truly matters.

If anything changes before the 4th I will of course let everyone know, but I am hoping for a quiet, yet eventful Christmas and New Year. How the heck are we about to ring in 2010? ummm I feel like we were just ringing in the millennium with people going crazy buying all the toilet paper and water from the stores. Who remembers that? Still makes me laugh. Wonder if 2012 will be the same way...better start stocking up now!...just as a precaution.

Love Hugs and Blessings

Wednesday, December 16, 2009

December of Truth

I love the opening lyrics of Imogen Heaps song Hide and Seek. "Where are we? What the hell is going on?" I use to listen to the song during my pregnancy with Lily, I understood it, it understood me, matched my moods, and the unspoken words I could never get out. The song is supposed to be about lovers, but to me, any song can be interrupted to each their own. In this case, I relate it under the terms of Lily; funny how I do that. Where am I going with this? Why am I avoiding talking about what needs to be blogged, well because at the moment I want to play some Marco-polo with this tender and sensitive subject. Like hide and seek, you know you can't stay hidden forever, you can't run forever, but it is sure fun trying.

Today while I was on my way to the clinic with Lily, I of course had the knots in my stomach like I always do. The dreading, sinking feeling that my life, her life, our lives could turn upside down at a moments notice. I try not to focus on this during the drive, but it is always tucked into the back of my mind. I guess I keep it as my caution reminder, the Expect the worse but hope for the best scenario I guess you can say. So when you get bad news, it doesn't feel like you just either ran headlong into a brick wall, or had the rug pulled out from under you and instead of falling backwards, falling forwards and hitting the coffee table on the way down.

Well, I am not sure how I feel at the moment, I think during the hit, or the fall, I became numb. In a way, I didn't expect for her to go from being decent during her last appointment, to being so down hill this go around. For 6 months we have sat at a 70-75 gradient (this will explain more what a gradient is. Lily is Aortic-valve stenosis) on her sub-aortic valve. 70-75 is high, a moderate problem, anything above 80 they are uncomfortable with and consider sever. Well if 80 wasn't good enough to send the flags up, Lily decided she wanted a higher number, something such as, 104.....yeah, that's right, not 84, no no, we couldn't have 90 something, she decided she wanted a good solid even number, and seeing she knows 4 is mommies favorite number and 100 is a good solid even number, why not add them together? Sorry, I promised myself that I would not add any of my sarcastivness to this blog.

104....wow...104, now here is the mind boggler, 104 probably is on the lower side of what it actually is because when she went in last year for her surgery they thought she was at 80ish when we went in, but once in she was in the 90's. So yeah..Dr.Rhee's words to me was, "Merry Christmas Lily! She knew what she wanted for Christmas." He told me that we can allow her, her Christmas at home, but after that she has to go in. No heart cath this time around, "Not needed" was the answer I got when asked. We know what needs to be done, there is no reason for another one.

I knew it was bad during her echo when Dr.A and Dr.D walked in. Seeing the two of them, together, looking at the echo, never good. Dr.D was the one who red flagged Lily's heart after her first surgery. I got the pat on the shoulder as they were both walking out of the room. It is their form of comfort, support, and sympathy. But shockingly, I didn't even winch, I just shook my head in understanding and smiled. We knew it was coming, we all were dragging our feet, but it seems we walked into a pit of quicksand and spiraled down quickly. Lily shows no sign of being bothered by it, she isn't in heart failure, so she doesn't have to be admitted for an emergency surgery like her second one.

Home for the holidays! I did get my Christmas Wish. All I wanted was to be able to spend it at home with my family. I have been praying that we could at least make it through the holidays, so everyone can see Lily, spend time with her before she had to go back in. The Lord answered, he listened, like he always does, now it is my turn to be excepting.

We know the time has come yet again, Dr.C said that he only expected a year off the last surgery, well we got it. It has been a year, just a few days past actually. Now it is time for the original operation to be done which is called the Ross-Kono procedure. For the crash course refresher it goes something like this.

1: They will take her aortic valve and get rid of it all together. It is completely defected. The aortic valve is supposed to have 3 leaf like flaps to it, Lily's only has 2.

2: Once they get rid of that valve, they will remove her pulmonary valve and attach it to her aortic valve side. (As long as her heart doesn't reject the pulmonary valve on that side, the valve will grow with her and never have to be replaced)

3: They will be adding a synthetic valve to the pulmonary side. From everything I have been told and all i have read, it is easier to live with leaky pressures on the pulmonary side rather then the aortic side. This valve will need to be replaced every 3-5 years depending on growth. It can be sooner at some points, and later at others.

These valve replacement surgeries will take place up until she is 21 years of age, at that time, they will add an actual artificial valve, that will only need to be replaced every 20 years from what Dr.C told me.

Now what are the survival odds to this very delicate surgery, because as simple as I might have made that sound above, it is a very tedious and long surgery. We are looking at about a 8hour surgery. The odds are not as high as her other surgeries which have always been in the 80-90%. This time we are looking at a 70-80%(from the latest odds I just checked into it says a 90-98% rate. I will double check with Dr.C and see what he says) survival, unless the odds have gone up since then. Now, I will tell you, like it is always told to me, these are just numbers. Every patient is different; Lily is different. Lily seems to bounce back good, just depending on the wear of her heart. After her first surgery it took them twice to get her off of the Heart and Lung machine (Bypass), after the second, it took six tries, they weren't sure if they could get her off of it before they came upstairs, but they tried again and her heart finally started on its' own. After her third surgery, one try was all it took and her heart took off on its' own. But her heart wasn't as bad during the first or the third as it was with the second. She was in bad shape during that time, heart failure, it kicked her butt. But I have been told, it won't be like that again, we won't let her heart get that bad. It isn't as bad, but not as good as it was 2 months ago. So once again...it just depends on the strength of the heart, the determination of the person. Lily is strong, and she is strong willed. Will it be enough for a 4th open heart surgery in 2 years? We hope, we pray, and we look no further then tomorrow. I may not be ready today, but her surgery isn't today, so I don't have to be. Some of you might remember her last surgery, i felt the same way, but yet I was ready when I had to be (read here).

So what is there left to say? Well, first and foremost. Happy Holidays to everyone. I hope everyone has a very Merry Christmas with their families. May we all enjoy the time with family, being surrounded by love. I know I will post again before the new year, so I will wait on saying anything on that. I am going to go wallow in sweet misery. I am looking now at, after this surgery, I get her to myself for 3-5 years. 3-5 years of home, sub-normal life, and no hospital (for the heart at least). There is a light at the end of this tunnel, just trying to focus on it right now, trying to focus for the sake of my sanity. What will be will be. I think I am going to go sneak in and watch Lily sleep now. Nothing like watching my babies sleep.

Love Hugs and Blessings
Merry Christmas from the McLaughlins

Monday, December 7, 2009

Prideful-Back talk-Artistic-Black eye?

Oh goodness me, where does one begin when there is so much to tell? I know I know, the beginning is usually the best place, but that is a lot to start with. So lets start with the good, then work to the bad and the ugly, shall we?

First and foremost, I am a very proud mother right now. I had a sit down with Lucas's school psychologist, Occupational therapist, Speech therapist, special ed teach, and his general education teacher. The meeting was to determine if Lucas was still in need of services he once qualified for. *The quick of the long here, Lucas was once in early intervention preschool. He was delayed in many areas, speech being his main problem. He didn't utter his first word until he was 3, and didn't start sentences until closer to 4. We worked mainly through sign language and picture books and such. We logged many hours of therapy time, never able to get a therapist in the home because one never became available to us in our area.* Since then he has done so much better. We still have textile problems with him and sensory issues, but for the most part he has evened out. Meaning, he isn't having as many problems and doesn't qualify for any special services anymore. (That makes me happy, but not what I am overly proud about...that is coming) Well, during this sit down that we had, everyone went around and gave their thoughts, evaluations, and opinions, about Lucas. OT, and Speech, along with the Special Ed teacher all agreed Lucas was no longer in need of services, OT did recommend that Lucas needed to work on his fine motor functions a little bit, but for the most part, he wasn't delayed, just has his own special way of getting things done; and correctly at that. Then it came time to ask him teacher her evaluation, opinions, and thoughts on how Lucas has developed since school started. (Here comes the chest puffing part) She said, that Lucas has come the furthest out of every student, in his attitude, maturity, and learning levels. That he is one of her top 10 students of the class and is the top 3 of her readers. That during centers (free time) he chooses to participate 9-10 in the academic, rather then playing with toys and such! Everyone of us just were awed by that factor. She also went on to say that Lucas does not have just one set friend in the classroom, that he is liked by all. That he is always seen with different kids all through out the day, and he can be considered a, Mr. Congeniality.....sigh.... My baby boy has grown up so much, I can not believe how far he has come. His temper and tantrums may still rage out of control from time to time, but not to the point he was at while I was pregnant with Austin. It was so bad I had to learn a special hold for him, just so he couldn't kick or hit my stomach and throw me into labor again...yes it was that bad...Anywho, that is the past, this is the present. He makes me one heck of a proud mommy! Someone might need to that a needle to my head and pop it, bring me back down to earth!

Now lets talk about Austin....truly not much to talk about, Austin is Austin. Plain and simple actually. Ok, maybe not so plain, and not very simple, but nothing is new with him. He still has a smart mouth to him, is going through his temperamental three's, which i hope he will kick when he turns 4 here in January. His back talk is getting old quickly. He actually told me about a week ago, when we were over at my sister and brother in laws house, that I can not tell him what to do, and to not talk to him that way (All beacause I told him not to drive a car on the wall and that he needed to drive it where it belonged, or mommywould take it away. I had asked him twice before to stop). In turn his back talk was answered swiftly with a firm swat on his butt and a time out. Afterwards we had the discussion of who I am, and why I do the things I do, and who he is, and what is acceptable and not acceptable. He was mad at me, and he told me so. Which I lovingly reminded him, that as much fun as mommy can be sometimes, I am not here to be his friend all the time either. Since then I have not heard those comments from his little mouth, but others that are not so pretty. Chris and are at wits ends, trying to figure out where this is coming from, the only thing we could come up with is, it is just his personality, and we need to help him manage it and teach him what he can and cannot say. The way he is going right now, he will be my worst nightmare in school and end up getting beat up because of his mouth. He knows not how to censor himself, you could say he comes by that naturally. I use to be that way as a child, but not as blunt as he is. Oh well, right now we take it day by day and will continue to work with him. No use worrying over what is to come....I keep telling myself this, but it has yet to sink in..lol!

Now onto Lily we go. Hummm where do I start? Should we talk about her artist abilities with my walls? Or should we skip that and start with the mild concussion she ended up in the ER with?

Concussion it is. Well Lily is officially a tomboy. She loves to be like her brothers and climb. Monkey see monkey do right? Well, Lily decided that her new thing would be to get the little chairs out of our entry closet where they are kept. She has a fascination with our DVD player, she learned how to work the volume nob, to our unfortunate surprise. Well, I have caught her a few times standing on her chair, which I will swat her on the back of the diaper and tell her "No No". I tell her she can get owwies and that is why we don't stand on them. Well on the unfortunate night of the 4th, Lily decided to pull one of those blasted chairs out. I didn't know until it was to late. I turned around in the kitchen to wash my hands in the sink, and I look to the living room, and there she was, trying to reach something on top of the t.v, which was still way out of her reach I might add. I could not get my hands washed and around the corner quick enough to catch her. I saw it all in slow motion is seems. She went head first (which of course she has a big one I might add) right into our sub woofer for our surround sound. The way she went down and hit, caused her to hit that, the rebound into the t.v stand, and she snapped her neck back while she was at it, which in the end come to find out she got a case of whiplash from. She cried of course, she was swelling around her eye and forehead. I took her to the kitchen and got an ice pack and laid her down on the couch. I watched her, no throwing up, no lethargy, nada. I gave her some Tylenol, she ate dinner, and went to bed and slept soundly. Well, the next day was not so lovely. She woke up screaming, I gave her more Tylenol, her face was swollen and puffy, and after breakfast, she started holding her head telling me, "Oww", she held her head and cried "Oww". She took her nap, slept a good 3 hours, when she woke up she was the same way. By that time, the peds office was closed so I called the on call. I explained what happened and they said better to be safe then sorry, and take her into the ER. So packed her up and took her into Mindy's Place (for those of you who are not in AZ, that is a local Peds ER that we have) I would have preferred St.Joe's, but I was not driving that far for something that was not heart related.

We got there and Lily was a trooper. She held her finger out when she saw the pulse ox, and then when she saw the blood pressure cuff she held her arm up. She leaned forward then they went to listen to her and was very quiet. They were amazed by how good she was, then I told them about her medical condition and they were no longer surprised but in awe of how big she is. Which is 31lbs 4 oz now. The nurse that was checking us in through triage, told me her 5 year old daughter had a heart defect that was surgically repaired at 8 months old, by Lily's second surgeon, Dr.N. We sat and talked heart mom shop talk while she finished up what she needed to in the computer. Her daughter is healthy and thriving. She is glad to hear of such a support group with the St.Joe's parents, and said the new unit must be nice when I told her about the 7th floor, which has become home to many of us from time to time.

Lily was taken back, not sure if it was due to her heart condition that got us straight back, or it was because of her major black eye, either or, it was nice to not have to wait in the waiting room with the many other sick children that were there. I set up my laptop as soon as we were in the room so Lily would have something to keep her entertained, and she was way to cute for her own good. Take a look at the video, it is all the proof needed to testify for the cuteness!

Hurt or not she knows how to put her cuteness on. We were taken back to CT shortly after, which believe it or not, she screamed through the whole process. Which to me makes no sense. She holds still for blood pressure, pulse ox, stereoscope, and even IVs. She whimpers with them, but holds still for them, but not with the CT. Ohh she was mad, fuming ticked off at me. She held her breath, I had to blow on her face, she yelled at me through her baby gibberish, and I am pretty sure if I could have translated it, I would have been hearing a strand of curses from her. When we were done, she didn't want me to snuggle with her, didn't really even want me to hold her. We got back to her room and I put her down, she huffed, shot me a dirty look, and then pointed to her movie. I felt like her servant and I was being reprimanded for my incompetency of looking out for her while we were there. Granted you and I know I was looking out for her by getting her check out, but to her, I was a big bad mean mommy, for holding her down and singing to her instead of picking her up when she screamed. She is a firecracker, she has a very strong willed and determined personality, where on earth she got that from I will never know...sigh...guilty again!

The results came back within 15 mins and sure as heck, she had a mild concussion. Nothing I didn't know. Nothing more I could do that I wasn't already doing, but I took her in just to confirm my suspicions, and just encase things got worse I wouldn't have CPS called on me for child neglect because goodness knows these days, it seems many parents can't be trusted.

So nothing more then Tylenol and Motrin could help out, got the, if she gots any worse such as, weakened muscles on one side, throwing up, lethargy, black outs, etc, bring her back immediately. Which to me is common sense seeing that would not be the norm for Lily. But like i also said, they didn't tell me anything I didn't already know with two boys on hand. All in all, Lily gave us one heck of a scare, not something I want to repeat, but she did learn her lesson, and hasn't climbed on chairs since then. Well at least one of my children learn from their mistakes!

Now on to my little baby Van Gogh over here; I will be needing to go up to the office and find out what paint they use on these walls, so I can paint over the areas she has colored on. Now many of you will be saying, why don't you just get one of those magic erase scrub pads, well my friends, tis such an easy answer; flat wall paint! UGH, lets talk real quick on the stupidity of this in an apartment. Do they seriously think that areas such as the dinning area will not get scuffed when chairs are in proximity to the walls? Then besides chairs and walls, excuse me while we talk about children and apartments, and crayons and little budding artist. A parent can restrain children and take away crayons, but when an older child must do their homework and these coloring objects become available yet again, the walls are at the mercy of the child's artistic abilities, when they run away with a crayon before mommy is any wiser to it. Let's just say this, when Chris left his permanent marker on our bathroom counter, and little miss grubby fingers got a hold of it, mommy about had a coronary when she walked into the hallway and saw the wall. I want to give a big thank you to the creator of acetone nail polish remover. I didn't get it all off, but at least it is hardly noticeable now. If it wasn't for Lucas and his school work, and Austin's amazing drawing abilities, I would remove all crayons, markers, and pencils from my household until her age of proper coloring maturity.

All in all the household is chaotic and full of craziness with 3 children. 6, almost 4, and almost 2, truly do give you a run for your money!!

Love hugs and blessings

~PS: I will post a slew of pictures here a bit later, my internet connection is being a bit slow right now and I am having trouble uploading them, so be on the look out!

Saturday, November 28, 2009

Thankful We Are.......

This year I am thankful for another Thanksgiving with all of our family and friends, but especially with our Lily girl. We are approaching our one year anniversary of her last open heart surgery. We have almost been hospital free for a year. I am thankful for that, I am thankful for what Dr.C and Dr.N were able to accomplish during her last surgery. That we were able to buy at least a year off the surgery. What we were hoping for it but not holding our breath for it. In 13 days I feel like throwing a party in celebration for this thankfulness and accomplishment.

Thankful I am for the priceless pictures and faces I have captured of Lily. Thankful I am for the pictures I have been able to get of all my kids together. Thankful for all the memories we have been able to make over this last year. Lily is closing in on 21 months of life. 21 months of miracles and blessings. 21 months of more love then I ever thought capable. Thankful doesn't sum up how truly blessed we are because 21 months is more then some get.
My Sweet Lily girl with her moo face, she makes this when there are bright lights of wind is blowing in her face. She will also do it if there is a booger up her nose, which she has started to learn how to pick them out. From time to time she will walk up to me and hold her finger out and go, "Eewww grow" (don't think I need to translate but just in case that would be Eww Gross) At least she isn't eating them right?
This would be Tweedle-dee and Tweedle-dum, not sure who is who, they both fight over who gets to be Dum...oh my boys. Austin wouldn't smile in any of the pictures, he was being our stinker bug for the day. He would run around and smile, but as soon as you turned the camera towards him he got the, "I am seriously done with you" look on his face. That would be my Austi boy though
Look, a picture of me and my husband, I don't think we have had one of us together in a long time. Then again, that happens seeing one of us always seems to be behind the camera. Don't mind the squinting, the sun was bright.
Lily and Nana. I wish Lily was able to spend more time with Grandma and Grandpa so she wouldn't be afraid of them and cry when they went to hold her. But with one car and them living about an hour and a half away from us, we don't make it out that way often.
Oh my Lucas boy, he is a soda addict like his mother, but just because he is addicted to it, doesn't mean he gets it all the time. This was something new, he has never had a soda can to himself. He felt like a special little dude.
Proof that Lily loves food. She ate like a moo cow on Thanksgiving, everything from Turkey, stuffing, sweet potatoes, mashed potatoes, ham, green beans, biscuits, pumpkin pie, and fruit. She loves her some food, and everyone who picked her up was like, "My goodness, you would never know she has had 3 surgeries" She is so solid, healthy, hearty and solid.
One of Lily's many faces, this is her, "You are really taking another picture?" look.
Me and my girly. In pictures like these I can see the resemblance more between her and I, but I am still told she looks nothing like me, that she looks more like daddy instead.
LQQK ( yes I just did the Look with two Q's) Austin is looking at the camera AND smiling. Daddy had to squeeze him to get this, but heck at least we got it.
This is Kaitlyn, she is a doll (yes Kaitlyn, called you a doll) She has so much spunk to her, and is a riot. She adores Lily, I think she might be Lily's biggest fan if we were to start a fan club. I hope Lily grows up to be like her, she has such a love for life and all that is good, she does it with flare and attitude. Kaitlyn's mom is one of my good friends, a rare friend to have these days. I miss all my neighbors from our old complex, I grew attached to them and the friendship's we formed. We have all become friends for life it seems. (Yes Danny and Michele that means both of you too) They are my extended family, I seem to be gaining more of those these days, but I love each and every one of them like they were my blood. Thank you for such a wonderful evening, it was like being with Family seeing mine are all so far away.

Well that brings this blog to a close, not much new to update, Lily is fine we have a heart apt coming up here on the 16Th. Crossing our fingers that Dr.Rhee looks at the echo and goes, "See you in February." What wonderful and glorious words those would be.

Oh on a side note, Lucas and Austin are sick again with Strep. They just finished their antibiotics about a week ago, so as on Monday we are headed back to the doctors. I know Lily doesn't have to worry about the side effects of it but still, if you all could say a prayer for safe guarding her and holding her strong against it. She is a strong little girl, she was the last to get sick our last go around and the first better. I pray she can keep up the great work.

Well that is all, look for another blog in 13 days! Unless there is something to update before then.

Love Hugs and Blessings

Friday, November 20, 2009


There will be a day, with no more tears, fears, and pain. There will be a day with no more needles, no more IV's, no more hospital's, no medications. That day will come one day for all of us. The day we are called home to Glory, to meet him face to face, the day we take our last breath here on earth. That will be the day, it all fades away, where it will no longer be a memory, it will no longer be a burden you carry, for yourself, for others, it will be weightless bliss.
I have never been a cynic, far from it, I think I have been seen as one form time to time, but that was before my Lily. I consider myself a sentimentalist, I am governed by feelings, driven by them. I know logic, I understand it, I don't discard it, but in the life we now are living, I live by emotions. Day by day, on a whim, taken on the fly. Planning life, is great for some, heck, great for many, but when disaster comes, turns that plan, and throws it from the window, you have two choices. One, dig your feet into the ground, say, "Stick to the plan, we will work around it." or two, say, "Screw life's plan, we will take what comes, and live day by day." Well the latter become our life's motto. One was once upon a time, or as we like to say, Once Upon our Lily. We are never angered by it, we are never resistantful to it, we smile at the fate we have been handed, and make sure to turn our hearts and head up to the sky at the end of the day, from our bended knees and folded hands. Our family was forever changed the moment our little 6lb 9oz bundle of miracles joined our ranks. More for the better then the worst. Many of you who just read the word "worst" please do allow me to explain.
When having a child with medical problems, life threatening, more so at some points, then others, you will understand what I am about to say. To others, sometimes it's the journey of watching others, your loved ones, dear friends, or your friends children, suffer through it all. Only then do you some what comprehend the lives we lead and the choices we have to make. The lives of the brave, the weary, the heartache, the pain, the fight; the continuous battle of it all. The hospital stays, the surgeries, the bad news, the good news, the separation from other children, the separation from the sick child, learning to live life "normally", a new normal. Giving more time to the child who is sick, then being able to give it to all the kids. No matter how much you try to spread yourself out between your children, to make sure no one feels left out, soon you are spread to thin. Your marriage has it hurtles, no matter how strong it is. A sick child wears on the whole family. Fiances, are always a big things, medical bills roll in, you wonder when they will stop and start paying on ones, but see no end in sight, as they keep coming. You have a whole drawer in your filing cabinet dedicated for them, bills, medical information, your life. You learn life saving techniques, you are always on guard, your medical knowledge grows, you feel like a walking book of medical terms, all for your child. You are their advocate as they grow, the feeling is sometimes overwhelming. You wonder if you are doing it all right, if this is what they would want. We fight for them, we fight until they can take over the fighting or until there is no fight left......
In the mean time, what has become of your family, your children, your marriage...you look at it all. Did you juggle it right? Did you dedicate enough time to it all? Do your other children hold resentment towards their sibling? Did you miss out on key moments of their life while attending to the life of their sibling. Making sure we all remained a family, it is the hardest thing, and most grueling task, minus the trials of the sick child. Holding together as one, strong, loving, and balanced.
I fear the boys will resent Lily one day, no matter how much we explain things to them. No matter how much time we give them. Lily's future is uncertain, and it became that way the moment she was conceived, as with the rest of us, but hers is a bit more uncertain then ours. We all can look towards the prospects of growing old, into our 60's+, at least. Lily, it all depends, on medical technology, Gods blessings and miracles. It is all his choosing, you don't look at life with the attitude of, "Well if we lose her, was it really worth putting her through all that pain to begin with?" She fights for her chance at life, no matter how big, or small it may be. A medically ill child teaches you to be blessed with every breath you take. To thank our father in heaven each night for another day, and if he so choose to wake us in the morning, we will see it as another blessing.
Some already have that outlook on life, others are not as fortunate. Most, take a life threatening diagnoses, or life altering experience. To open their eyes, to see the world in such a brilliance, in such glory. Once you are awaken to it, you never want to let go of it. Even if we were to lose our precious girl, we would never let go of what we have learned. She may never have a park named after her, her name may never cross the lips of millions, she may not make it into any medical text books, but my daughter has lived, she has defied the odds. We were once told to not expect her to make it through the night, that there was nothing more surgically we could do for her, that she was in the hands of God, and truly she was. She is our legacy, she changed our lives, and the lives of those who know her. She is my fighter, she is OUR fighter, she shows our family the power of God and his grace. His beauty, his love, his life and creation. I may write her story, but many write books, and many are forgotten.
Most of us will live or lives, pass through here on earth, and leave nothing behind but a name and a tombstone. We will be on an ancestral tree, that is brought out with each new generation, an old photograph will be shown to our progeny, a brief story will be told, until we are forgotten. Such is how life goes, how it has gone before us. Not all of us make big stories, and we aren't all supposed to. We may suffer, but we aren't the first and nor will we be the last. My name is Jenna Lee Brown McLaughlin, 200 years from now, I will be known as, great great great great, something to someone I will never know. Lily with her medical problems, is still just Lilyana Annsaleigh McLaughlin. Daughter of Christopher Jay and Jenna Lee, sister of Lucas Christopher, and Austin Nicholas. And hopefully one day, she will be aunt and mother, but that brings us full circle.
One day, never let go of the hope of tomorrow, but the acceptance of today might be our last. Live life, love life, enjoy life. Don't try to understand life constantly, enjoy the beauty of it from time to time. Think with emotions and feelings, not always logic and reason. Sometimes you just have to let go of what you knew, to know something new.
Love, Hugs, and Blessings,
Jenna Lee Brown-McLaughlin
the proud daughter of
Wade Brown and Julie Daffron

Thursday, November 12, 2009

We need a miraculous silver lining

I know how many of you live in AZ who read this blog. For those of you who don't, I am not sure if this is on the news anywhere else, but the grocery store union is about to go on strike for Fry's and Safeway. Which for those of you who are in CA, that stop by and read this blog, know this is not a good thing because it means many are out of a job until an agreement can be met. Which right now, during the holiday season is a bad time for anyone to be without a job but especially during a time when the economy sucks as is.
Where am I going with this? Well we are going to affected by this something awful. Us and thousands of others. We have been having financial difficulties as it is, we just got caught up on our car payment, which was 2 months behind, about to be repo'ed, then we are still $281 behind on last months rent. Our electricity is behind, have very little food in the house, but yet don't qualify for state assistance because we make to much. Which I don't know how that is possible seeing we barely make enough to cover, rent, electricity, car payment, insurance, the phone/Internet, which without the Internet we wouldn't have a phone, and I can not be without a phone because of Lily's heart. After all that is paid, we barely have anything for groceries. I am tired of hearing I am hungry all the time from my kids. In the 7 years with my husband, we have had hard financial times, but nothing like this. We wouldn't be so bad right now, but Chris took a vacation and things got mixed up and we ended up without a check and it has yet to be straightened out. Which that was a hard hit on us, seeing it was a whole paycheck we lost.
I am on the verge of tears all the time, my face has broken out like I am a teenager again from all the stress, a the word headache is my middle name. The kids are sick, I am sick, then lets add this damn strike to the list, I want to say enough is enough and throw in the towel. How much can we take. Granted yes we have a roof over our heads so it could get worse, but a roof over your head and an empty belly really sucks. As an adult we can handle it more then what kids can but how do you tell children that there isn't that much food and you have to ration what you have to make it last? You can't do that. Then knowing we are going to be without an income because of this strike. Even if I get hired on at one of the stores as a scab during the strike, what I would make wouldn't even begin to cover the bills we have. I am down on my hand and knees, beseeching the Lord for mercy, strength and courage...but I feel none, I feel so alone, and I can't show my tears, because I have to be the strength, the backbone of this household. I am the glue that holds us all together. So another day will pass, and I will put another fake smile on my face, and try to find a miracle of a silver lining in all of this....there is always a silver lining...isn't there? Please pray with us, prayers are the only thing that will get us through this tiring time ahead.
Love Hugs and Blessing
Oh my Lily girl...I am so with you...

Wednesday, November 4, 2009

Happy Late Halloween

I know I know, I have been a horribly bad blogger as of late. Do forgive me, I have had no excuse to neglect the blog, and it isn't like I haven't written any blogs, I just never did publish them, they were really long and good blogs, just not finished, and by the time I should have posted them, to much time had gone by. For me it is hard to pick back up on a blog and continue to write, I write with my moods and if I am in a particular mood that day, say sadness, anger, nostalgia, I can not just happen to pick back up on that mood. Which is very sad because I have many good blogs I have never posted. Oh well, they are there for me to read and print off for my out takes of blogging that never made it to the finished product. So the quick synopsis of life over here. Lily is great, we bought another 2 months for her last visit in the beginning of October. Her valve pressure has held stable at the 60-65% mark for the last several marks, which continues to make not only mommy happy, but the doctors are happy also. We are keeping our fingers crossed tightly that come December we get another 2 months all clear, so we can hopefully sail past her second birthday, which is what Dr.Cleveland wanted to begin with, with this repair. I don't say it often but I should, Dr. Cleveland is my hero, our hero in this family. Because of him, his steady hands, and years of medical school and wanting to become a doctor in the first place, we owe him everything.
Now real quick, Lily is weighing in at 29lbs 4 oz, standing tall at 83cm or 32.6771 inches...or should we just say 33" inches tall. She is healthy and where she needs to be for height and weight, she is in the 91st percentile for weight, and in the 63rd percentile for height. Pretty good if I do say so myself considering she is a heart baby. She is not fat, we consider her healthy..and even the doctors say so. Keep it up Lily, you are a growing girl who has to still undergo so much. Even though she weighs so much right now, she can easily lose a good amount during her next surgery, so we never take the weight gained for granted.
Now on to bigger and better things, such as Halloween and what has become mommies late night sweet tooth cravings. My poor children did the work of going door to door......WAIT...scratch that, it is as much mine as theirs because I still have to go door to door with them, I do not let them go up to the door without me..sorry, call me crazy, but that is just me. Oh and asides from the fact I still am regaining my 16 years of no Trick-or-treating allowed. Yes this is where my Jehovah Witness roots come into play. We were the household you would curse out as a child because you would see no lights on but every car in the driveway and the flickering of the TV, but when you rang the door bell there was no response. I am still surprised to this day that our house was never egged or T.P'd. I wouldn't have blamed them and I think I might have even laughed about it, at the expense of my butt being spanked for my behavior, but hey, I was a smart-alic child that enjoyed a good laugh, even if my butt stung for it later. I use to laugh about it then but my father said one day my actions would come back to haunt me, something about Karma..pssshhh...excuse me, but I didn't think JW's believed in stuff such as that, or am I wrong. I could call my grandmother and ask her but I do not wish to be drawn into a long conversation over religious beliefs and prefrences....SOOO...I will just settle this argument with, no, they do not believe in Karma or anything of the sort. So I have no reason according to them to explain my children being such willed children other then the way I raised them, which isn't truly wrong, but I will stick with Karma and bad ju-ju (Sami I stole your word). My rebellious nature has come back on me in ten fold..oh well, I love it and embrace and remind myself, when they are 18, they can move out, and I will be rewarded years later with many grandchildren, which will remind me that I did a good job and didn't kill my children on the many occasions where I thought duck tape and the wall sounded like a grand idea. I do hope you all know I am joking....or maybe I'm not...now that is the question you will wonder about every time you visit my page. Just remember, I love my children with all my heart, even at 2'o'clock in the morning and I am cleaning puke out of the carpet, my hair, their hair, their clothes, their bed, the bathroom floor, and the sink...I LOVE......MY.....CHILDREN!! Laughing out loud over here!
On with the pictures I say, Yes I purposely did these in reverse order...Enjoy the babies, they sure were cute!
Lucas and his Loot

Lily and her loot, let me tell you, once she saw what she had, she started screaming, and if you tried to touch it (like we did when we started picking it up) she screamed and then proceeded to bark at us. Since when did my daughter learn the guard dog routine?
The kids received glow bracelets from a house, which I thought was pretty neat. The loved them, was thrilling for the night!

The wonderful big brothers helping sissy out with walking house to house, more like irritating her
Lily and the big pumpkin, for the life of me, after 4 shots, I still could not get her to look at the camera.
The boys and the big pumpkin. Lucas thought it was "So Cool" he then asked me, "Mommy, that pumpkin doesn't have any of that yucky stuff inside it does it?" I laughed and told him no..you will see why it was funny below.
Lucas and his school friend Bella. She saw him first while we were out and about. He goes up and hugs her awkwardly, like trying to give her a pat on the back while having the, you smell gross look on your face. I thought it was cute. But it melted my heart when I heard him say, "Bella you look really pretty." AWE...my baby boy knows how to win the ladies over already..ugh, dang McLaughlin charm....I am going to have to watch out.
We had to walk over to the neighbourhood across the streets from out apartments. We started by going by Uncle Matt and Aunt Melissa's house.
Aunt Melissa and Cousin Madi came by before trick-or-treating, Madi was Little Red. She had the basket and everything.
I am big on Candid shots, which was all she was willing to give me anyways.
Lily, Aunt Melissa and Cousin Madi
(Lily and Madi are a month apart in age, Madi is older, Lily is bigger...hummm..I just make them big)
I LOVE, LOVE, LOVE this picture. My favorite of the night.
My second favorite, Lily and the pumpkin. She was so stinkin adorable.
Austi man as the Hulk
Lucas as a baseball player. Don't harp on me, yes I know he has a Boston hat on, with an AZ jersey, I am well aware of that, but hey, my mom got me the outfit, so I can't complain. He was still adorable, and that is all that matters. That whole outfit was pieced together, Aunt Sami gave us Kenneth's (her almost 3 year old) baseball pants, My mom got the hat and shirt like mentioned, but the socks were Great Grandpa Jim's (whom Lucas never got to meet before he passed, nore I).
My 3 beauitful babies.
Lily has bowed legs, I know
My ladybug princess. Aunt Sami and mommy worked hard on that costume. She was a doll
Her hair for the evening, don't ask how I get her to hold still for so long, because I don't even know how. She loves her hair being done and I love doing it.
All Hallows Eve
Mama and her Girl
See I am the one who carves the pumpkin, trying to make up my lost time remember?
Lily honey we need to work on that smile, you are going to scare the children...
Lucas and the gooey pumpkin...I will let the pictures explain it all.

This is my 3rd Favorite picture
Lily had to help...
I hope everyone had a safe and happy Halloween.
oh on a side note, I taught my boys a song on the walk home from trick-or-treating...needless to say they sing it around the house now.
Trick-0r-treat, smell my feet, give me something good to eat,
If you don't, I won't care, but I'll pull down your underwear."
Yes I know, bad bad bad mommy, they giggled all the way home istead of crying they were tired. Hey a mom's got to do, what a mom's got to do!
Love hugs and Blessings

Thursday, October 8, 2009

Who are you calling Fat....Mr.Bus Driver

OooooKkkkk...I know that's not a word...but lets not lecture me on that right now, cause goodness knows I have enough steam to blow off this morning....Where is this coming from you ask? Well, my last blog, below, has a reason for most of my anger this morning. It isn't even anger, it is more frustration then anything. So...if you don't want to read my rant, then just click the little X , well that is more of a big X but you get the drift, it is at the top of the page, in your right hand corner..............

You still here with me??? If you are hold on to your seats here we go.

My daughter is under no means, FAT. She is chubby, but with babies that is normal, with heart babies, well we all know the more cushion for the pushin is better then none at all. All heart parents and heart doctors will agree. She is in the 95% for her age, she isn't fat by any doctors standards, and if she grows like the boys, she will be built sturdy, but skinny. I mean, come on, my nickname was the flippin Tank, and here I am, 140lbs after 3 kids, for the record that would be a size 8 jeans, and I wear medium size tops, I have never been over weight except for once in my life, and that was while I was on depression medications, they aren't very food friendly. I may not be the 105lbs I was before Lucas, or the 112lbs before Austin, or even the 116lbs before Lily, but I am in no means fat. No one in my family or Chris's for that instance is fat, borderline fat, a little bit fat, nada. I hate the word Fat, it is such an ugly word. My children are all very active, they eat constantly and yet don't put on much weight. I was considered anorexic for such a long time, but anyone who knew me, knew that wasn't the case because I ate any and everything I could get my hands on, and I still do....hence the extra weight I haven't dropped since Lily....anyways....Lily....NOT FAT....PUDGY...BABY FAT....NOT FAT!!!!!!!!!!!!!!!!!

Ok....now moving on....I had to go to the store this morning after I dropped Lucas off at the bus stop. But before that lets destress a bit, then I can get back to my anger management.

When Lucas and I walked out the door this morning, I wish I would have had my camera then. It is hot air balloon season, I have seen them at least once or twice the last couple of weeks. This morning was different because I kid you not, right behind my apartments 2 of them were on the ground getting ready to go up. I have never seen a hot air balloon that close up before...kid in the candy store over here...it was neat. Lucas was like, "Mama look, they're so pretty." In all honesty I have seen prettier ones, but they are a marvel to see in person. These are a few of the shots I got from my lame digital camera. They were so far away so I had to accept the fate of the crappy pictures with my zoom.

I carried Austin out this morning in his Wolverine undies. He had me put him down and was like, "What are those?" I told him they were hot air balloons....and my 3 year olds response, "But mommy it's cold." Oh the logic...why didn't I think about that. I tried to explain to him quickly is a 3 year old way how they work, but he still go that, "I really don't care, let me go back to my cartoon" look on his face.

Now.....back to my aggression for the day...don't mind my attitued today, I am a bit sleep deprived because last night was the first night in 4 days I didn't take night-quill, needless to say, my body has had so much sleep in the last few days, I welcomed insomnia with open arms, I mean I can't sleep like a normal human forever now can I? Where would be the sense of that seeing I am normally a walking zombie with sarcasm. Well if you have miss it, I am back in full stride cause here I go.

Dear Bus Drivers,

We thank you greatly for doing us the service of carting our brood to and from school to be educated. We hope one day they will grow up and do something great with their lives and it is because of you, and your driving skills, or there lack of sometimes, that they are able to better themselves.

Now about these driving skills, please note, just because you are the biggest thing on the road well not to a Semi, or an oversized trailer, or the machines that work at construction site...so you aren't the biggest....but still...your bus is bigger then my Pontiac Grand Prix, it is also bigger then all cars on the road, and family trucks. So with that being said, please remember, just because you drive something big, doesn't mean you own the road. I like my lane, I like my car, I like my life. There are these things on the road called lane dividers, you might see them from that lofty seat you sit on, and I understand that making turns are more difficult in that then a normal vehicle, but please, if you are going to cut the corner or that just happens naturally, then you need a warning on the back of that thing you drive. If you didn't know, I have a fear of Semi's and Bus's. I know you can't always see me, so I try to stay out of your blind spots, and I try never to drive next to you, but that wasn't an option this morning. And you reminded me why I truly do not like bigger vehicles. No I don't have bigger vehicle envy, I just know, that with bigger vehicles, comes bigger egos and complexes...trust me I know, I use to drive a truck, and I thought I owned the road. Back to the subject at hand. It is not ok for me to stop in the middle of an intersection next to a median in the middle of a turn because my options are either to run over the median or get hit by you. I do not like being honked at by cars behind me, it makes me want to get out and slap people...( to the person that honked at me, ummm HELLO...DID YOU NOT SEE I WAS ABOUT TO BE RAN OVER BY THE DANG BUS???? YEAH I THOUGHT SO) For those of you who don't know, when you type in all Caps, you are being serious and usually yelling....Oh and be thankful I didn't have the kids in the car, because when we stopped at the light, I know you are fully aware that I gave you a dirty look, if the kids would have been in the car I might have ran home and dropped them off, only to follow you back to where you were going, to have a nice long chat with you....yes I am crazy like that.

To finish this letter Mr or Mrs. Bus driver, please try to remember the courtesy or road rules, you are not God of the road...I am...I mean...no one is.

Thank you so much for your time and attention... it has been greatly appreciated.

Mrs. Stay out of my lane.

Love hugs and blessings