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!

The moment when I call your bluff

This post has been sitting in my "Que" for quite some time. With the beginnings or the ending, but never the middle. However today is the day when I lay down my cards, call your bluff and say "bull sh*t". 
Everyone says it, heck, I have probably written a blog about it, and say it often. A a church going girl, I have even believed it and said it to myself. "you got this Kat, God wouldn't give you more than you can handle". Then I got to thinking would he? So I looked. Where is the verse in the bible that says He wont give me more than I can handle? I should have that bad boy tattooed on my forehead, and written on my bathroom mirror or framed next to my bed so when I wake up to deal with one of the kids 8,000 times that night I can calmly look over at the cute little pinterest inspired frame next to my bed and say "oh yes, thats right, the bible says God wont give me any more than I can handle". Thats where this comes from.  I looked, I read my bible, I googled, I can't find it. Its not there. Like I said, I am calling your bluff, and mine to.  Now, if I was being tempted? we got that covered. God wont tempt me more than I can handle (1 Cor 10:13) that has nothing saying about being able to handle things. Things that he does give us? Burdens, yup that sounds fun. We can bring our burdens to the Lord, but it doesn't say he will take them away. Trials? We get trials of all different kinds. Yippee Can't wait.  So when we say "God wont give you any more than you can handle" to the grieving mom who is saying their last goodbye to her daughter. They sound nice and sweet, but its a lie.
Can a 5 year old little boy handle the death of their dad?
Can a wife handle being the sole survivor of a car crash killing her 3 kids and husband?
Can a mom handle their child being in and out of the hospital to many times to count?
Can the mom of a child with brain cancer handle it?
The short answer to these questions I think is no, they can't handle it.
What God does promise us? A Hope. A Future. So that I can live with. I don't need to handle all that God has thrown at me. I am ok to have a pity party. I am ok to melt down in the middle of the post office just because I don't want to "handle" my situations anymore. I am ok to ask for help, I don't need to feel like I have to handle my situation because God said He wouldn't give me more than I can handle...He never said it.  Trials, he promised and from those trials he will refine us and make us into the person he called us to be.

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.

bloggy world

I like the blog world. You get to meet people. People that you would never have the opportunity to meet in real life, until you meet them in the blog world first. Sometimes you meet mama's that turn out to be the sweetest of friends. That like coffee as much as you, and that your kids get along so fabulously together, and those said children write stories at school about how they can't wait to get together with your bloggy mama friend. This is the case with my friend Ashley and our daughters Lexi and Tori.


This is also the case with my friend Catherine. Catherine happens to be an AMAZING photographer, so when I wanted to capture all the memories of Tara's 4th birthday, I could not dream of having anyone but Catherine come.
I like the bloggy world. Its fun.

pictures of kids

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.