Now what?

Whats that now? I don't understand? How? Why? Come again? Can you please repeat that a little slower with some valium in my vodka. Yup, this is me on Tuesday of last week.
Sometimes dates are embedded into your brain. Dates that will never be erased from your memory. For me, my kids birthdays, my anniversary, your best friends birthday from Junior High and High school (Nov. 22, Happy Birthday Lisa!), The date your daughter crashed, and the doctors told you to say goodbye to her (September 14, 2007), The date the specialist for cardiomyopathy called and shattered my world...again. April 1st. The day that many people play funny, cruel, or insensitive jokes on other people was the day that the Cardiomyopathy Dr. Jeffery Towbin called my phone as I am walking into the state office to try and get better insurance (or at least help with our current insurance) and told me that he was "greatly concerned" for my daughters heart.  You see, a few months ago upon the request of our awesome cardiologist we started giving information to Dr. Towbin, to get a second opinion on Tara's heart. Why it was getting worse after being stable for so long? Are we on the right tract for medications? What else can we do? I knew the conversation had the potential to be hard, but honestly I never expected it to be. Kind of like that first cardiologist appointment that I ever went to on my own after Tara was finally discharged from the hospital after 3 months. I got dressed up, put on make up, ironed up my nicest pair of jeans I owned (who ever irons jeans?), even did my hair. I went into that appointment expecting to hear the words Cardiomyopathy? No that resolved itself some time ago, her heart is completely healed. What I got instead was a crash course on dilated cardiomyopathy and the cruel statistics and what my world would have in store for me with it. Well that and the knowledge that when you ugly cry, snot will remove water proof mascara. This is kind of how I felt on April 1st. When Dr. Towbin starts explaining the workings of Tara's heart, and how her heart is "unique" to other children with Dilated Cardiomyopathy and her snapping motion her heart does when it relaxes instead of a fluid movement. That her left atrium despite not having extra fluid volume had an increase in pressure in that chamber, and that there was a stiffness in her left ventricle causing the fluid build up and the dilation of her left atrium.  (yup more medical mumbo jumbo that I wrote down on chicken scratch paper then immediately called our local cardiologist to get a run down on what that meant in the real life world).  What this means is she has Restrictive Cardiomyopathy as well as the Dilated Cardiomyopathy, and from his findings he does not think the one caused the other....basically dumb luck...again. The link I provided is from the american heart association on a little run down about Restrictive Cardiomyopathy, but basically it is a stiffening in the lower chambers of the heart (ventricles). The hearts rigid walls fail to relax and expand "restricting" the ability of the heart to fill with blood. While the heart is pumping it is unable to supply enough blood to the body (causing syncope episodes *passing out*, drops of blood pressure, low heart rates, all things Tara has been experiencing recently). This puts pressure on the upper chambers of the heart (atria) and they become enlarged. In advanced stages of the disease the heart may not pump blood effectively and blood may back up into the liver and lungs as a result of congestive heart failure (Tara is currently in congestive heart failure). What this means to us? Well the short story is we need to figure out what caused her RCM (restrictive cardiomyopathy), and make sure the other kids are not at risk (they will all be screened).  They will be doing an MRI with contrast soon (the order has been put in at Rady Childrens, but we do not have a date yet on when) to find out a little bit more about her heart (this has the potential to be a risky procedure for Tara so please keep her in prayer), there is also talk of her getting an AICD (internal cardiac defibrillator) put in place because of the much increased risk of sudden cardiac arrest.  I will (try) and update this sight when I know more, but for the most part, please just pray.  I feel like yet again we are walking uncharted territory, and again my daughter is baffling doctors.
Again, prayers are much appreciated. Especially in the next month or so when we will be finding out more information on this disease, and how it is going to effect our family.

More updates on Tara

Today we took Tara to the doctor. With her coming home from school early, just wanted to see how everything was doing physically with her, as well I had some questions that I needed to talk to the doctors office regarding insurance stuff. Anyways...when in there they did height, weight, blood pressure normal stuff. The nurse did her bloop pressure then changed her position and did it again, then asked me what she normally runs for blood pressure. She then got concerned and got the doctor.  Her doctor took it then got the other doctor. Needless to say, her blood pressure was 62/34. To low for anyone to operate correctly. With talking to Brian, it has been decided that with all of her medications its to be expected, but still causing all of her symptoms *Nausea, vomiting, sleepiness, pale, dizziness*, yet because of her function we can not pull back on any of her medications.  Her team of doctors decided that especially going into cold and flu season (by 10 am today there was 12 kids who had gone home early for fever or vomiting at her school...yikes!) that it is in her best interest to go into "home hospital care". This basically means that she is still enrolled in her school, but she can no longer attend school and will have a teacher come to her house for 5 hours a week to help her keep caught up.  We are still working on a few details to be ironed out tomorrow morning, but when she called me to pick her up for the day at 9:30 I don't think either one of us could have predicted that it would be her last day of school for an extended period of time. I don't know how I am feeling about all of it yet. She likes school. Yet I knew for a while that she was having a hard time. This was talked about several times in the last month (its only been just over a month since we got word that her heart was "significantly worse") yet like I said in my last post, we are taking all of our cues from her. I felt like I could "pull the rip cord" at school if I needed too. However this decision I did not have much say in it. I feel like the doctor pulled my rip cord for me *I guess in tandem flights someone with more experience does pull the rip cord, and this is for sure a tandem flight with her doctors!*. I am glad they made the decision (less stress on me), but now I don't feel like I have something to fall back onto on the "what if's".

Tara's heart

This has probably been the hardest post I have ever written, yet it could go on and on, so I will try and be as brief as possible. Most of you (all 3 people who read this) already know that Tara's heart took a significant hit recently. I am getting a lot of questions (and I REALLY like that), but I thought maybe I could put the most asked questions here, and refer people to here? So first; this is a little about her. Tara was born healthy. She does not have a CHD (Congenital Heart Defect) which effects 1 in 100 births. Tara rather has an AHD (Acquired heart Defect) Something that she Acquired along her life. In her case somewhere around 8 days old. She got a virus (well, many actually) but it started with a tummy virus, because she was a newborn with NO immune system, that virus turned into a lot of other "things" and caused her entire body to shut down. She was a very sick sick girl on a lot a lot of drugs as one of her Nurses Catherine would say. She kept the nurses and doctors very, very busy and the ones for the first 3 months of her life now all share a very special place in our hearts. With a BIG miracle from the Lord, and the incredible care we received, she is now 6. One of the original viruses that Tara got was something called myocarditis its a big fancy word that means virus that attacks the heart. Her left ventricle took the hit. This myocarditis left her with something called "Dilated Cardiomyopothy" this I included a link, but if you are to lazy to read it, basically means her heart is enlarged and does not pump blood effectively.  Since you heart is a major organ (you need it to survive), everything else works a little less than perfect as well. Not to mention the fact remember that tummy virus? The one that shut down ALL of her organs? That has a lot to do with how everything else works in her body.  Tara's heart did get a little better in the first several months of he life, where she was able to function at home on 2 meds (Enalapril and Lasix for those curious minds). Her heart was NOT perfect, but it was maintaining. Unless you knew her history, you would never know she had a sick heart. She lived a relatively "normal" life. She has had to many hospitalizations to count (around 30) for various things, but again, relatively normal.  Things changed sometime from what we are guessing in September? The doctor does not know when her heart got worse, or what happened, all we know its that on October 4th we were told that her function was "significantly worse". We also do not know if it happened all at once, or if it took months, or weeks to decline so much. We were in maintenance mode with her, as her function for the most part had not changed in 5 1/2 years. Her doctor often referred to her as being "Tara normal" not normal for anyone else but to her, this was normal. So now onto the questions we are getting. (and again, I really like these questions, they make me feel good, and makes me feel like you care for our girl, and want to know more about her, and how you can help).
WILL HER HEART GET BETTER?
This is a hard question to answer, the short answer is, medically no.  Think about Tara's heart as a balloon. Her heart is much bigger then other hearts on 6 year olds. So lets blow up your balloon to a bit more then is comfortable on your balloon as far as it can go, right before it pops. When Tara was first sick, this is how her heart was. Now, remember she did get a little better, so take out some air on your balloon. Your balloon is still compromised,  but its better. Now, blow up that balloon again (remember, she got worse). It was easier to get to that bigger state, because it has been there before, however its still very compromised. Now, lets say that her heart does get better all the way better, and it goes down to a normal sized balloon. That ballon is still always compromised, it wont ever function right. That is Tara's heart. A balloon once blown up that far will never go back to its normal shape. Just like Tara's heart, it will never go back to its normal state, its stretched to far. However that being said, I serve a big God, who can do GREAT things.
HOW MUCH ARE YOU NEEDING TO LIMIT HER RIGHT NOW?
Tara is an amazing girl. For the most part she is able to self limit. I am taking all of my cues from her. If she is tired, then  she needs to rest, if she wants to play, I let her play. The school, doctors and I agree that at this point she should not be doing any PE or recess at school.  There is not really any one there that can specifically take care of her and watch her alone. Its safer for her to stay inside. They are doing things for her to make it fun, and we are still trying to brainstorms ways to help transition this part.  That being said, she is still in her regular gymnastics class, and doing cartwheels. I do notice a significant decrease in her ability to get up and go, and naps are on the daily right now.
ARE YOU WORRIED?
Yes. This is not as easily answered though. We have complete confidence in her cardiologist (Brian Fagan (he deserves a link, he is amazing, and we love him, and he loves our girl).  We followed him to San Diego from here in Pasadena because he is that good. We have daily chats with him right now, and have always had an amazing relationship with him. He does have Tara's best interest at heart, and will do what is best for her. He truly cares for her.
IS SHE A CANDIDATE FOR A TRANSPLANT?
Short answer again, yes. However she is NOT listed for a transplant at this time. A transplant while it is a great last resort, its just that, a last resort. We are not grasping for straws that this moment in time. Tara holds all of the cards. If she is doing ok on what she has, then he (Brian) is ok with that.  If she starts loosing weight, not growing, showing that she is having a hard time with her day to day, then we will walk that road. However again its a last resort. Many people believe that a transplant is a fix all end all. It is not. Besides the fact that its major open heart surgery, you take out your heart that you were born with, and put in someone's heart that died *which is hard for me to comprehend, but I am so grateful for all the donor families, they truely give the gift of life in their hardest of times, they bring life to families*. There is many many things that can go wrong in just that surgery alone.  Then add in all of the new medications, the risk of infection, the risk of rejection, and a slew of other diseases, there is big risks. Risks we will be ready to take if need be, but at this point it is hard to wrap our brain around it.
WHAT IS THE NEXT STEP?
Tara will let us know. She is on new medications, that at this point have not helped *sad face*. There is a chance that we may need to be admitted for IV medications, but again we will cross that bridge when we get to it.  We are in constant communications with her doctor, and are confident he will make the best decision on when we need to do that. Right now its just a lot more appointments.
HOW ARE YOU/KIDS DOING WITH ALL OF THIS?
Jim and I first. We are having a hard time. Life is stressful enough with running a business, and having 4 kids. Put on top of that one that is very sick right now, life is hard. We are trying to navigate and find our groove again to be "normal" but are not there yet. We are in code orange right now. I am looking forward to being code yellow again.
Elijah will get his own, he is taking it hardest of all the kids. He was old enough to see much of what was happening when she was first sick. He remembers that. He is also a teenager. Grace and Mercy here people, grace and mercy.  :)
Tori and Jake, they are remarkably well. They were so young when all of this happened that this is still "normal" to them. They know that her "heart is a lot sicker right now". They have also been prepped for more hospitalizations for Tara. That makes them sad, but yet they are excited and wondering how many play dates that can get out of it. (it takes a village, and we are super grateful for our village).
Tara, she again knows that her heart has gotten worse. She says that she feels more "exhausted" and even brought up swimming the other days and said "mom, remember in the summer time when I would swim and swim? I don't think I could even do one lap right now!" *insert break moms heart* We have started talking to her about harder things (transplant possibility, more hospitalizations, things of  that stuff), but we are being very kid friendly and in super beginning stages of that. We just don't want to blind side her if and when she does get listed. We have also started talking to her a little about hospital admissions. Since we followed Brian to San Diego to Rady Childrens hospital her hospitalizations for the most part will be down there now. This is hard for her to understand. She loves her "egg doctors" at Huntington Memorial in Pasadena. Frankly, we do too. We know the staff on the pediatric floor, and are "friends" with them now. However will her heart function being so low right now, for the most part, Rady's will be where we are. I have assured her though that they will still have eggs, and soon they will be her friends too.
HOW IS SHE ADJUSTING TO HER NEW MEDICATIONS?
Good, for the most part! We are now on 4, Enalapirl, lasix Coreg, and spironolactone. We increased her coreg last week, so she is having some significant side effects (nausea, tiredness *even more* decrease in blood pressure, so often cold, and low heart rate). Given a few more weeks on it, and those side effects should go away for the most part.

I think that is it for right now. I can always answer more questions and put them on, but for now I am done! :) Thanks for sticking with this long post. If you did you totally win a prize.
Post more questions if you have them, and I will edit, or make another one!

Kindergarten?

As I type that, I still can't believe it. Yup, my baby who was not going to make it thru the night is going to kindergarten....tomorrow. These past few months have been LOTS of preparation for the school, and for her. Its a weird feeling to "teach" the ones you are leaving your children with how to potentially save your child's life. When we started this process in May, the school did not have an AED on sight, in fact, the school Principal was not even totally sure what one was. I have to say though, the school itself has been amazing, getting all of their teachers and staff up to date on their CPR Cards, going thru drills of "what to do when" scenarios. We have had meetings, after meetings, after tears, then more meetings. As of Friday we are officially signed off by all her doctors, and the school. No turning back now. She is officially a kindergartner. She is super excited, sporting a new hair-do, and new back pack. Mom and dad are of course worried about what lays ahead of us. Germs, germs and more germs I assume. I have no doubt she will thrive as she always does. This girl amazes me. What an honor to be her mom. Now with all my new found time think I will have time to pick up blogging again?

Tara and her funk beats

So On Sunday night Tara went into an abnormal heart rythm. It started around midnight, and ended around 7 am...yes 7 hours. It was all over the place, from low lows, to high highs. We went to her cardiologist to find out what is going on. Right now, they are not sure. Her Echo looked a little worse than it did last time. But not significant. Right now they put her on a 24 hour event monitor to "capture" anything to see what is going on and how to best treat it. There is a lot of What ifs that we have going on. However knowing that we serve a God who already has her plans set out for her gives us peace.
We love you all and so appreciate your prayers. Pray speciafically that they can capture something on the event monitor in the next 24 hours. That way we know exactlly how to treat it.

4 years ago today

4 years ago today my life was forever changed. 4 years ago today I was watching my daughter struggling to survive. 4 years ago today a comforting nurse told me to get my family to say goodbye to my daughter, my baby. 4 years ago today I handed my baby completely over to God. 4 years ago today started a journey I wish on no one. 4 years ago today I learned what Cardiomyopothy was. 4 Years ago today I learned to trust in God. 4 years ago today I went into battle. 4 years ago today my new normal started.

Today, I still struggle with the "what ifs". Today every "hello" is precious. Today when she calls me mama my heart beams with pride. Today she makes me laugh. Today, I look in her eyes, and can't help but see Gods hand. Today I see her play. Today I see her with her peers. Today she reminds me of my battle I went through. Today I know that she is worth it.

Today and every day I get on my knees and thank God for choosing me to be her mom. Its an honor and a privilege.

How long is never?

This is a long over due post most likely, but I have been thinking about it for awhile. I guess it always comes up, as we get ready for Tara's birthday. A kiledescope of emotions comes about. Its been nearly 4 years since Tara was born, then a week after her 4th birthday, it will be 4 years since my life was forever changed. Since my "world" was shattered, and my life, and my normal that I knew before was never to be again. I live now in my new normal. Its not a bad normal, but a different normal. I often (not as much as I used to) get the question "what is Tara's health like now?" Well, the skinny...It has not changed. Her heart function is exactlly the same as it was the day we left the hospital 3 mos. after she got sick. Tara however has "learned" how to deal with her heart, and the common cold doesn't *always* send her to the hospital anymore. I then get the transplant question, or the surgary question. You see, those are the questions that are not easy to answer. Even if you have the same faith as me, its a hard question to answer. Sometimes people don't understand that I KNOW God is going to heal her. He doesn't make promises he can't keep. He told me that he would heal her, and I will take that to the bank, every day. In Deuteronomy 31:8 it says: "God is striding ahead of you he is right there with you; he wont let you down, he wont leave you. Dont be intimidated, don't worry." he wont leave me. Ever. Never. The kids were playing the other day, and I overheard a conversation about the word never, and Jake told Tara: "Never is a really long time, huh mom." I of course said yes, but then that question came to me later in my quiet time. How long is never. Is it 100 years? 10 Years? Or is it just the 4 years that my sweet girl has been with us? No, in actuallity Never is NOT a long time. Its doesn't end. Websters even says: Not ever: at no time; not in any degree; not under any condition. Not under any condition will my God ever leave me, he is right there ahead of me, striding ahead. Have you ever walked on the sand from your car down to the water, and when you walk its hard, sand is never easy to walk in, I always like to find other "footsteps" to walk in, it makes it easier to walk in the sand when someones "strides" ahead of me. God does that in my life, all of it. So when do I feel like he wont take care of Tara? Never.

Your mommy is beautiful....

Today I was getting ready to leave the house. I was in my bathroom getting ready. The girls were playing in their room with a friend named Macie. I am hearing them play on the monitor that is in my room. I over hear this conversation.
Macie: Tara your mommy is sooooo beautiful.
Tara: I know she is really pretty.
Macie: yeah, I really like her.
Tara: me too.
the conversation kept going on, but I was beaming. Birds were chirping above my head, I felt like Cindarella. Not only do my kids think I am beautiful, but so did my girls friends. Way to make a mom feel good. After I brushed my teeth and decided, since they already thought I was beautiful I would really show them and put some mascara on. So I went over to their room with my head high, birds still chirping and said "hey girls, I am just getting ready to leave, are you having a good time? What are you playing?"
Tara: "We are playing house, Tori is the mommy"
Just then, the birds that were chirping over my head pooped on it.

Whopping Cough

Its been a really hard week...really hard. Jim left Sunday, 6 days ago now. It does not get easier kissing my husband goodbye at the airport no matter how many times I do it. It still sucks. A lot. However my tears were quickly turned into super powers as by Monday night I had 2 kids sick. Tori with the stomach flu (better now), and Tara with the "unknown". Low O2 sats, fever, just funk. I knew something was brewing. By Wednesday fever still there, and a cough had come with it, my nights were getting longer. Last night was epic. Not in a good way. It was a bad night, bad like I have never had to experience at home with my sweet girl. Tears, and coughing spats that would dip her O2 into the high 70's that would last for 1/2 at least. When she would finally "break" from the spat, tears would fall, and she would ask to go to the "egg doctors" (Huntington Memorial is the egg doctors, she always asks them to make her eggs there, and they do.) I want to keep her home, I so want to keep her home, because in the day time, she is good, well better. Yesterday she was diagnosed with Whopping Cough. A vaccine prevented disease. While she has had the vaccine, she is immuno-compromised so still got it. While I have always been "pro vaccine" since Tara I have been even more. Frankly it pisses me off. Tara got whopping cough from someone who was not vaccinated. If you choose to put your child's life at danger, so be it, your choice. HOWEVER, when you then put my child's life in danger, it gets personal. So parents who choose not to vaccinate, this is for you. Until you see your child laying in the hospital fighting for their life, you may never get it. I don't necessarily want you to vaccinate for your kids, I want you to vaccinate for my child. My child who had nothing to do with your stupidity. In the long run, most likely it will never be your child who fights for their life from getting a preventable disease. Most likely it will be a immono- compormised child who did nothing to you, yet you choose to put THEIR life on the line. How dare you.
PS any anonymous comments will be deleted. You are welcome to express your opinion, but if you have one, have the guts to put your name, after all, I did.

3 years old, and 2 years.

Today my Baby turned 3. Its been an emotional day. So many things. Its my blog so I will tell you want I want, and keep in what I want as well. I always have a hard time with Tara's birthdays. There are emotional to say the least. On top of all that, Jim is in Qatar again. He comes home again on Friday, but, then leaves again shortly after that. We as a family have decided for him to move there to Qatar for the next 2 years. We obviously have not come to that decision lightly, as my husband, my kids dad will be away for 2 years. We have talked a little of "us" moving there. There is A LOT to think about that. The main factor would be that if Cardiology does not give us the approval that it would not even be considered. The other factor is school. There is an American Private school there (and I hate to say this, but they would most likely receive a better education there....). but taking a Junior Higher out of school, and away from his friends for 2 years seems like it can't be a good thing...right? Also my family. My mom, sisters (their husbands), brother (his wife), My nephews, my nieces, my Tyler and Sarah (even though there are technically niece and nephew I think of them more as my kids, and I am fairly sure my sister will not give them up for the next 2 years...). Our house, our belongings, our dog (well, he would go right?), my car, Jim's car, our business here, our Church, our friends, the fact I have made a commitment to the Internship for the next 1 year. Like I said, its been an emotional day. So glimpse there you go. I need to stop crying now, because I am fairly sure this many tears could most likely fry my computer.
So baby Happy Birthday, you amaze and inspire me. I am honored and blessed every time you call me mommy, that God would choose me to be your mom, its a privilege.
Oh, and because I am already emotional, today also marks the day of Regional Center not providing any more services for her. So Miss Alicia, and Miss Nancy, thank you so much for taking the time to love on our baby. Its been such a delight to see her grow with us over these last 2 1/2 years.
Seriously I am a wreck....

Make a wish

This little girl is pretty excited, she has been granted a wish from Make a Wish!

She is pretty excited as you can tell! :) There was some talk/brainwashing trying to happen for a bit to decide what to do, she wanted juice, mommy was teaching her how to say pool. However in the end we decided a make over of her room would be great!! Soooo this is before: I can't get the whole room in there, but Tara's new big girl bed is on the right of the picture, (my niece Sarah is in the crib that I have not take out of there yet...) and Toris bed is on the left side of the picture. They have these great cubbies in there rooms which are such a great size (as you can tell by the crib fitting in their perfect) so I am thinking we are going to have a bed put into each of the cubbies (like full or queen) then have the frilly netting put up on the peak of the cubbies (can't really see, but just before the chandaliers) and try to get a closet put in there! Plus tea party stuff, as she loves her tea parties!! So, tea party fairy room it is! I think it fits! Plus Tori is pretty excited because in her words "I didn't even need to have a heart and I get a new room too!" (we have been telling the kids the reason why Tara got to make a wish is because of her special heart...Tori just left out the special part!) The boys are definatlly not sad at all though, as the Make a Wish people that came over to the house were AMAZING and so sweet and gave a gift to all of them, so they are way to busy playing with their new toys to worry about the girls having a "girly room"!

I will forsure post after pictures, but until then, Make a Wish Rocks!!

Crutches and Bear

Today was a big day. Big. Huge. Hence why I am still up at 1 am. Ok, maybe not (I am just a night owl). But none the less. A big day. I have moved Tara to her own room SEVERAL times before. However I have always kept the crib in my room (we had 2). Just in case. In case she is sick, in case she is just off, just in case. However for the majority of her last nearly 3 years of life she has been in my room (lets just say she has either been in my room or the hospital!). Well, about a month ago I moved her. To a big girl bed. Its not a crib. In her own room. She loves it. She likes sleeping in there. She was excited to be in there. Last week I got an email from a friend. She said someone was looking for a crib for a house for battered women. A women came in and had a baby. I didn't even think twice and told them I had one. They came and picked it up today. Today I have a large empty spot in my room. Next to my bed. Where my baby has slept since she has been home from the hospital. Today, my crutch was taken. My If she is sick she will be closer to me spot. It will be filled with a fake tree (its a big room, it needs a tree). I no longer have a bed in my room for my baby. My crutch is gone.
This sweet little bear has been on her crib since my sweet little girl came home from the hospital. Sweet isn't it. This bear has significance to me. Maybe not to Tara (she did pose with it though!) When Tara was VERY sick one of Jim's friends came to visit us at the hospital. His name is Chris. She was in Huntington Hospital for maybe a week. My baby was 2 weeks old (she was a week old when she was admitted to Huntington Hospital). My baby that nobody really got to know when she was healthy. My baby that I was so proud of, her beauty, and even though it was hard to see her like that (with tubes, lines, swollen etc), she was beautiful to me. She was my beautiful girl, that I wanted to show off, but people who came to see us weren't really coming to see her. They were coming to see us. To make sure "we" were ok. I understand, and am sooooo grateful for everyone who came to bring us meals and love on us. We did need it. Looking back I think it was a type of beauty that only a mother can love. Tubes and lines don't scream beautiful baby. FYI. :)
When Chris came that day he brought us the bear. Wrapped up super cute (thinking his wife has something to do with it!) with a card. The card that said "Congratulations on your new baby" Love Chris (and family who I am leaving out for privacy...I didn't tell him I was going to blog about it! Its only fair!) Chris does not know what that card, and this sweet little bear meant to me. Someone was coming to see her, admire her beauty, and congratulate us on our new baby. Chris came, brought us a meal (Mexican I think?) and a present for our little girl to love on.

She may not hug and kiss it every day, but every night as I went to sleep seeing her crib in my room, and the sweet little bear attached reminds me of the day when friends came. Came and loved on my girl, congratulated us on her beauty, and meant more to me that day then he ever realized.

So tonight I go to sleep without her crib in my room with the sweet little pink bear attached to it staring at me as I drift of to sleep. Thank you Chris. Thank you for lifting my spirits that day nearly 3 years ago. You made me feel normal. That I had a normal baby, that my normal baby was beautiful.

PS. The bear is now attached to her big girl bed. To someday remind her. Remind her of her beauty and that people cared.

The natives are getting restless.

So, looking back, I have not posted ANY pictures of the kids on here since April. Well, they have grown...sorry.

I think the biggest news, is that they are in Swim lessons. They LOVE it! Tori is seriously turning out to be my little swimmer. A few days ago she did the most beautiful backstroke to me. About 20 yards of it. I am thinking that after a few more weeks of this I may decide to put her into a US swim team. The Claremont Club (where I swam at) is not far from my house, so I am thinking there! You know, because I am not busy enough. Jake as well is doing incredibly well at swimming. He can swim a bit unassisted, but I dont think he will be able to go on a swim team quite yet. I might look into lessons thru the year? We will see. Tara as well is doing GREAT! This girl L-O-V-E-S the water. You can't tell with the first pictures I am posting...well, because she screamed...the entire time! but the second day she loved it...I promise. She is now floating on her back, all by herself, kicking like a maniac, blowing bubbles, and loving every minute of it. I think it helps that her very best friend/mortal enemy is in swim lessons with her (Sarah my niece). Elijah did not go into swim lessons this year. He didn't want to. :(

Elijah also has some big news. He has been saving money since January to buy a bike. Like a lot of money. He managed to save $280. Not bad for a 12 year old! So he got his long awaited bike last week. We bought it for $300 so we had to put in a bit of money, but lets just say it was a job well done. Plus I like to "own" a portion of his bike. You know, in case I need to take it away. :)

Tori as well got a new bike. Its HOT pink and black and super cute. She loves it, and is doing well on it. We still have the training wheels on it, she is umm lets just say SUPER coordinated, so we will keep those on for a bit....

In other big news, Tori starts kinder in just 2 short weeks. :( Have no doubt there will be pictures for that! And tears for mom as well. sniff. My baby is growing up!

Jake and Tara also start Sonrise pre-school on Sept 1st, Taras 3rd birthday is coming up in Sept. Big party of course! The annual Carlson Backyard Birthday Bash with Blood Drive of course! Tentative date is Sept 11th for the party (so mark your calenders), still need to confirm with the blood donor people. Trying desperately to get American Red Cross, but am thinking its going to be USC blood drive again, they were so incredible to work with last year, and super sweet. I would rather do American Red Cross to choose where the blood goes, but USC was great and donated half of the blood we collected to Huntington for us. So we will see!!!

Well, Jim has my camera today, so I only have these 2 pictures, but be rest assured I do have more, and hopefully will post later today. But for now, hopefully these will calm the natives....and by natives I mean Grandmas.

Heart mumbo jumbo and why I can't sleep.

Its nearly 12:30 am. I can't sleep. I am exhausted, but yet when my head hit the pillow about an hour and a half ago (right after the Bachlorette...my obsession!) my mind began to race. I wont go into all of it, but the short story is: Jim and I have gotten an attorney for Tara. She needs additional medical insurance, and we have tried every option. I consulted with a friend who has dealt with special needs kids for way longer then I have, and this is the route she needed to go as well. Its different. I can't say I fully understand everything, and every time I think of it, it makes me mad. We applied to get health insurance thru the ADA with medi-caid or medi-cal. We were turned down. Turns out that if you make over a certain amount of money every year, you can't have a child with disabilities. Well, as it turns out, you can. The state just chooses not to recognize you. Frustrating to say the least. So, needless to say, this is the only route we found. She needs continual health care. And with Jim being self employed, and us having to pay for our insurance monthly on our own, and with the insurance company able to increase your rates 8% every quarter at their will...Lets just say its not getting any cheaper. Our insurance company knows we have no other option...so we have been increased. The max amount every quarter. (hmm, maybe its not the short story of it all!)
So why has this gotten me flustered tonight...well, today Jim and I had a long chat with the attorney (again...the process started about 6 months ago). They have officially decided to take our case on, and today asked for detailed attempts of the first 72 hours before her birth, her birth, and the first 24 hours after she got sick. Its all the emotions on the grid. 72 hours before my water had broken, but nobody believed me. I went in several times before to Labor and Delivery. They kept telling me I was peeing my pants...they said it happens often with women who just "don't know" what it feels like to have their water break...HELLOOOOOO NOT MY FIRST BABY!!! I knew. After reviewing all of the hospital records, the attorneys office now knows too. They believe me. Not because they trust me, but because they saw the hospital records. My water did break prior to delivery. The delivery that when I got to the hospital, they disregarded. Sent me to the bathroom with my husband to pee in a cup. I was in pain. Transitional labor. FYI it hurts. Just a few hours before I was sent home saying my water had not broken, my contractions were braxton hicks, and that I still had 3 weeks before my delivery would happen, they told me I was not dilated at all. The day before in the doctors office I was at 4 cm dilated. I didn't know you could re-gress with that kind of stuff? As it turns out you can't. But yet they sent me home. But with the kind words of "oh, honey you will know when you are really in labor". Yet just a few hours later I was again in that same hospital delivering my daughter in the quiet bathroom with my husband catching my daughter over the toilet. My precious daughter. My 4th child. My 2nd girl. The baby we would call Tara. Tara was born with a perfect heart. Whole and complete in every way. My husband after catching her looking up at me with fear in his eyes saying "honey, I know it hurts, but I am going to need to to pull that help cord behind you so we can get some help in here". The next part was such a blur. My husband took complete and total control over the situation. When the nurse finally arrived she was flustered. She only had 1 hemostat. After talking to herself for quite awhile, my husband finally took charge yet again and said "clamp the baby" She looked at him stunned, then figured out she was the L&D charge nurse and decided she should oh I don't know...do something. She told me to hold my cord. When my husband walked me out of the bathroom several minutes later as we walked by the nurse me still holding the cord her words still ring in my head. "Now make sure you hold your cord up or you will bleed to death". Geez...thanks lady.
then fast forward a week. To the day I will never get out of my mind. The day when my life was forever changed. To September 14th, 2007. The day I was told to say goodbye to my daughter. The day when my worst fears were coming up. When in my dark moments I wondered if they even made caskets that small to fit a newborn. How to have a funeral for a newborn. Who comes. Not all of our friends had met her yet. Her Grandma had not even met her yet, she had not gotten to smell her beautiful newborn smell, to see her piercing blue eyes, or the chubs around her neck. To kiss to most wonderful cheeks you had ever seen. How do you plan a funeral for the most beautiful girl who the world, or all of your family and friends had not gotten a chance to know. How do you tell her adoring brothers and proud sister that she would not come home again? We didn't have to. God stepped in. He told me that very day. It was clear as anything I have ever heard. "She will live". It was not an easy road. Its still isn't an easy road. We walk thru it everyday. Everyday when I give her medication in the morning and at night, I am reminded. When I hook her up to her monitor when I kiss her goodnight and tuck her in. When I tell her how special she is. When I tell her that God is the strength of her heart. (Psalm 73:26 the verse I hung to for over 3 months in the PICU). When I go and give her (and her brothers and sister too) one last kiss before I go to bed, and sit back and adore she sweet cheeks, her chub neck, and her pale/blue skin. When I am in bed asleep, and her monitor goes off letting me know something is wrong with her heart, and I race down the hall half asleep, but getting more awake with every beep I hear not knowing what is happening. Adrenaline kicks in. Its hard to go back to sleep after that much adrenaline has gone thru your system. Yet on a regular, if not daily basis, its my new normal.
You see, this is what gets brought up even more on the days when I am asked to re-live that day. All the moments I can barely remember, yet will never forget. Tonight I write. Not write for you, but for me. To capture some of these moments and feelings. Feelings again that I will never forget. For this, I am bitter sweet. Because, when I re-visit these feelings of despair, anguish, and fear, I can sit back and remember how big my God is, and how he loves me so. For tonight when I tucked my miracle into bed and I told her that God was the strength of her heart, and her portion forever. She said it with me. "Gobs my hawt, an my porpin foweber". Yes baby He is. He is mine as well baby, He is mine as well.

Home sweet home!

Gotta love those cardiac kids and there "no reserve". My husband said it best to the ER nurse. Tara's idea of a fun time is cough, sneeze, septic. (Tara has gone septic 3 times just in case you didn't know). (and no, she did not go septic this time, but there was some concern at first because of her raging fever and it not comming down with tylenol and advil)
So we are home, she is feeling much better. Ending up being viral meaning no antibiotics, and she is fever free. Thank you for all your kind words, and your prayers. They were felt! :)
I will blog more later. But for now, my house is calling!!

Tara is admitted updating on carepages under taracarlson

John 3:17 (and rambling trying to fit 2 posts into 1)

I love when something you have read, or heard strikes you with a new accord, just as you need it. Today, it was done for me yet again. The verse John 3:16, everyone knows it...Say it with me now "for God so loved the world that he gave his one and only begotten son, that whoever believes in him shall not perish but have everlasting life". Good one. I like it, I love that my kids know that verse, as its one Christians should know. However, can anyone tell me what John 3:17 says? I tell you, I don't know if I have ever really looked at it, when referencing John 3:16 in the bible, I rarely pull it up...I know it. So today in my few minutes that I took for myself before I took my nap (because my kids gave me the best fathers day present ever by taking a 2 1/2 hour nap!) I read it, before, and after. I tell you, I have no idea why this verse is not something I have looked at or seen before, I don't know why its not written on my walls, or etched into my mirror in my bathroom. It might just be my new favorite!

John 3:17 MSG

God didn't go to all the trouble of sending his Son merely to point an accusing finger, telling the world how bad it was. He came to help, to put the world right again.

Grace, its good. Peace, its lovely. Mercy, its enduring. Help, its lifesaving. He came to help. Never did he come to accuse me (or you) about how bad we were before we accepted him as our only hearts desire. He came to help. I like help.

This week has been a challenge to say the least. *footnote, never blog and make dinner, I just burned Mac n Cheese...it is possible* I have been busy you know with my full time job. Raising 4 children, one with special needs. *another footnote, I am getting much better as using the term special needs, before I used to be almost embarrassed, now, it rolls of my tongue, as she is special, incredibly special* (and now another footnote, that is where I saved my post on Sunday as I needed to take Tara to the ER....more on that near the end of this post.) I have also been working for Jim this past week. So with my 4 kids, I have also managed the job site (on site). Not the easiest task (however I must say, I was probably the cutest supervisor ever in my heels swinging a hammer).
With Jim gone, I needed to step up where needed, HE helped. I was able to get thru past week, not on my own, but with help, from HIM. He came to help, and put MY world right again. Jim is home now, and while I (we) am still in the trenches with work as we are trying to play catch up on this past week together (as a team, I so love it), it felt so good, to know during the last 9 days, I was not alone, that HE was there to help me, every step of the way. I worked with Jim again on Monday, and Tuesday, but by today, my kids needed me, my house needed me, the laundry definately needed me!
Today, it was good to be home, its where I belong, however, I will still do what ever it takes to help my husband, we make a good team, and while catching some late dinner yesterday (seriously like 730pm) and we were sitting across from each other, he smiled at me, thanked me for all I had done the past week, and said "I like you coming to work with me, its like we are dating again, except I get to sleep with you at the end of the night". Yup, love you to honey!
So there you have it, I am now a working mama!
This week puts me into another busy week. My sister and her husband (Chris and Lolo) got this AMAZING trip given to them, so I have my niece and nephew for the next week (Tyler and Sarah).
So onto Tara now, and why the trip to the ER. On Sunday (the day I started this post...) Tara and Tori both woke with a bit of a rash, not itchy, but a rash. Didn't think to much about it, (I worked til 12:30 am so my sister (Lolo) had the kids til then). By Sunday night, the kids were starting to get itchy, I tried some hydro cortisone, some Calmoseptine, wasn't working...I gave Tori some benadryl, it worked, stopped within half hour, Tara (because of her heart) CAN NOT have any antihistamines, so, no benadryl. She was very itchy...VERY VERY itchy, like itchy enough that she scratched herself til she was bleeding. So I called her pediatrician, maybe she had a good suggestion. She didn't...she said go to Urgent Care, she might need a steroid shot. So we took her, not open...closed early on Sunday! So I called her ped again, and she said go to the ER. Lovely. 4 hours later, after seeing the doctor, we left with an ice pack...yup, doctors advice, put ice on it. $100 for the ER visit, for the doctor to tell me to put ice on it. So frustrating. I also have to watch her "scratches" and they could be a source of infection because she has scratched it so much. Thanks. Well, the good news is, she was so exhausted, and in her footy jammies, she slept good all night. Both the girls woke up not itchy, Tori's rash was gone, Tara's was still there a bit, but mostly because she scratched it so much. So we are better. I am not sure how I feel about any of that night. Frustrated, yes. Curious, of course. Overwhelmed, a bit. I just don't understand. The ice helped a bit, at least got her to fall asleep, why was that advice not given to me over the phone to save me $100. Our ped is most likely OVER concerned over Tara (she has been with her since the beginning) and the ER doc was so Ho Hum it wasn't even funny. So like I said, not sure how to feel, but frankly didn't have time to think about it to much, as Monday I was already up and ready to pick Jim up from the airport, and start the work day with him. How do other heart mamas go about it with no benadryl? Any other suggestions?
So there we have it, 2 post in 1, so sorry that I lost most of you, but I couldn't figure out where to stop the other, and where to start the next!

Your Story, John 14:11

For Tara's 1st birthday, I handed out little candles, in a glass votive jar with the word BELIEVE on it (they were stickers, and I stuck all 150 on them...just FYI), I then tied them up with a cute little ribbon on cellophane, and put a little note card on it, with the verse John 14:11.

"Believe me when I say that I am the Father, and that the Father is in me, or at least believe in the evidence of the Miracles themselves".

I loved it. Tara is the evidence of my miracle. I already believe in the Father (You should too), but if I hadn't when Tara got sick, and stayed sick for so long, and survived, I would have had to have believed in something, based on the evidence of miracles themselves. Doctors had no "medical reason" for her to survive, she was clearly a miracle, we heard that, and still hear that, almost anytime we meet, or see any doctor. They read her chart, look up several times at her as they keep reading with their jaw on the ground, and say, "you do know she is a miracle right?" (one of the last times was at the IEP meeting last week as her case had to sent to the "medical team" for review) The nurse was just shocked, and by the time she was done reading she was in tears saying "she is extraordinary, you don't EVER see this, it doesn't happen, you must know that she has a purpose in life, she is a miracle"...yes I know (HELLO...Jeremiah 29:11 Hope and a future here! ) I didn't say that, but instead I agreed, and said "I serve a mighty God, who does miracles everyday, on that day, he choose my daughter." I don't say things like that just as a "ho-hum blah blah blah", I say those things, because Tara's story is a miracle. It deserves to be told, people should believe in the father based on the miracles themselves. Its Tara's story, and people need saved.

While singing in church on Sunday we sang one of my favorite new songs called "Story" written by Paul Stephens, and James Peak of the Movement Band (The Movement is our youth department at my church, I am soooo blessed to go to such an amazing church (The Cause) where such amazing music is coming out of, and even more blessed that Elijah is now a part of The Movement). The song goes "When they hear your story, might they be saved.." its an amazing song, I have the album blaring in my car right now, (its not available on itunes yet, or I would totally link it to here....). While singing it in church on Sunday (even though I had just heard it a few minutes ago in my car on the way to church) The Spirit put a new light on that song. When I first heard of it, I immediately put it with Tara, I mean after all, her story is incredible. However last Sunday, I realized, even I have a story, you have a story, Everyone has a story. How do you want your story to play out? How do you want your story to read? That you did a good job raising your kids? sure, that sounds nice, but instead of that story for me, I want it to read out a different way. I want my story to read, that not only did I do a good job raising my kids, but that I loved God with all my heart, I praised Him in good and bad, my story lead others to Christ, then their story lead others, I want to change a generation with my story.

Everyone has a story, when you die, how do you want it to read? If you do not know Christ, and have a personal relationship with him, you have nothing. I would love to talk to anyone who does not have a personal relationship with Christ, and tell you what he has done for me. You are the only one who can change your story. You write it, and then you die (sounds harsh when you write it like that, but its the truth). How will it read?

A different dream for my child

A few weeks back, I posted about about a Different Dream for Tara. From there, Jolene Philo the author of the book A Different Dream for my Child emailed me. She wanted talk to me, I was honored to say the least. Well, this past week the 2 part article was up on her web-site, so I wanted to put it up here so that you all could see how amazing Jolene is. Amazing.
You can read part one here: and part 2 here: now since I am so not technologically savy, I am hoping those links show up...if not let me know. They were posted on the website www.differentdream.com if all else fails!! I will write more later about our week, but this was so great that it deserved a post all of its own!!!

Colds

I don't like colds. Well, I don't think anyone really "enjoys" colds. Me, its rather a despise. They freak me out. You see, 2 weeks ago when I started to get the "aches", the scratchy throat, the nasal congestion. I panicked. I was bathing in purell, staying away from my kids (as much as I can, I am there mama, they still need food, and there boo boos kissed), and praying that this cold would keep away from the kids. It didn't. Tori was the first to feel the sniffles, I kept praying in fear that Tara would get it too. She did. I don't like colds. Tara started feeling bad last Monday. Just a bit winey, and with lots of boogies. Since then its progressed. It usually does. You see, Tara has been hospitalized 21 times in her last 2 1/2 years of life. 16 of those times have been from colds...the common cold. A cold for Tara does not mean sniffles, and extra cuddles. It means pressure on her chest (as it usually turns into some type of pneumonia), its means extra visits to her pediatrician, it means no sleep for mommy, as Tara's heart does not like colds, and she has funk arrhythmia's, which means monitors going off all night long. I don't like colds. "We" are leaning how to keep her home (not at the hospital) during colds. When I say "we" I mean all of us (mom, Tara, Ped, cardio). She scares us...all of us. Normally Tara sats are GREAT! Like 98-100 great. Sleeping a bit lower sometimes, but for the most part, great. Today ALL day she has been 92-93. Last night when she was sleeping, 84-87. Not good. She is still holding her own. Acting normalish (a bit more tired, and cranky). I am trying. I like her home, she is fun, my other kids are fun, my bed is more comfy then the Cheds (chair/bed) at the hospital, snuggling with my honey is way more fun the pacing the hallways of the pediatric floor with a sick girl. I know that with Sats like she has now, if I took her into the ER we would be admitted. I am not ready to do that. I am learning, "WE" are learning. I am optimistic that we will be able to over come this cold without being admitted. Greater is He. I will praise Him no matter what. I made that decision during worship at Thursday morning bible study (sometimes when this happens I have to just sit and marvel at all He has done.). He is greater, more than I'll ever need, He is greater. If He never chose to heal Tara completely (which I don't think is the case), He is still Greater. When He does choose to heal Tara completely, He is greater. He is more then I'll ever need, He is greater. Either way I will praise Him. Why, because He is greater, and more than I will ever need. What about you? What do you need Him to be greater than? Health? Greater. Finances? Greater. Relationships? Greater. Loss? Greater. Fear? Greater. Worry? Greater. Greater is He, and more than you will ever need. I like that.