Thursday, June 30, 2011

It's all about numbers!!!

It was kind of funny today....I was thinking about doing my post today all related to numbers because: #1-I always think in numbers-I am a math teacher-and I like to count and do stats for everything (nerdy, I know), and because #2- most of what we do here in the hospital is related to numbers!  Then I looked at facebook and Jacquie Tui had also written a comment about how everything in Ab's life now is numbers, so it kind of confirmed my thinking.  So, this post is written in terms of numbers:

42-The number of days it's been since Abby collapsed in PE, I know it seems like so many more. 
42-Is also how many days left until teachers report to school.  This will be the first year in 13 years that I haven't been working on the first day of school.  This makes me really, I'm not kidding.
20-If we leave tomorrow......the number of days we've spent admitted to PCMC in the last 42 days.  I was trying to figure out why it feels as comfortable here as our temporary "home," but it's because we've been here almost the same amount of days.  Everyone knows Abby now.  When we were wheeling her to the 3rd floor in her big hospital bed yesterday, it was like she was on a float in a parade, just sitting there, waving to all of her fans!!! 
4:00 am-the time Abby woke up this morning not feeling so great.  She said she had a stomach ache and a headache.  They checked all of her vitals and everything looked okay, so we'll just have to wait and see what the docs say.  She looked really pale again, which was discouraging, because all day yesterday she looked and felt so good.  Her blood pressure has been all over the place all night long.
19-The number of doctors and nurses that came to listen to Abby's heart yesterday.  They are a little concerned because they found a new murmer in there.  Yesterday was the first time they had heard it.  If it's still there today, we'll be back in the cardiology department today getting another echo.  Abby really wanted to hear it, so my dad let her listen to her own heart.  She thought it was cool!
36-The number of days that Abby has been on the heart transplant list.  It's easy to remember the day she was officially listed because it was her birthday!!!
10-the number of days that Britt and Brock and the rest of my family, except my dad, will be in Hawaii.  They all leave tomorrow.  It will be hard for both of us not to see Britt and Brock for so long.  I hate that we can't just be living together in the same house, all the time.  This is really hard on all of us.  It really stinks.  It's hard for Britt and Brock too.  Yesterday Britt realized that she will spend more consecutive days in Hawaii than she's spent in any other one place all summer!  I just can't wait until we can be back home, in our house in St. George, kids and dogs, and stop all of this craziness.  I'm kind of worried that Abby's heart will get here while everyone is gone.....but I guess I'll take it as soon as we can get it.  I'm just ready to move on.
3-The number of ports that come out of Abby's picc line.  Britt posted a picture yesterday.  It's funny because they're red, yellow, and white so Britt joked that we could hook our TV up to her.....same colors!!  A really cool thing is that the little wire that the ports feed into was threaded up the vein in her arm up to the vein by her heart is smaller than the tip of a pen, but it's divided into 3 sections so she have 3 different things going in or coming out at one time.  They gave me a little piece of the wire to show Britt and Brock, I guess it's like a souvenir.  It's a little uncomfortable for Abby, she said that it only bugs her if she bends her arm, or straightens it...that 's all!  She's just going to have to get used to it now though.  It makes it so she doesn't have to get poked so many times, so it's worth it.
3-the number of times Abby has won at Monopoly in this room.......and we've only played 3 games!!!
1:30 am-The time that I made a fool of myself this morning.  The nurses came in to fix her IV and check her vitals.  I was asleep.... but when I heard them, I woke up(kind of) and thought it was morning, so I asked the nurses, "How did Abby do last night??"    Well, since it was only 1:30 and we didn't get to sleep until after 11:00, they didn't even answer me, they probably just went out the door and laughed at me.  That's okay, I just rolled over and tried to sleep some more.  I can't help it if I'm a dork.
2-The number of Liters of oxygen Abby is now on.  She used to be on 1 L, but they bumped it to 2 when we got here.   I'm not sure if it will go back down or not.
1-the number of stuffed animals in Abby's room right now.  It's so sad, last time we were here her bed was covered and her room was all decorated and there's nothing.  It's just not worth it when we're only here a few days.  When we're here after her transplant, I want it full again, it makes it more fun!
1,196-The number of blog hits yesterday. This is amazing to me!!!   Holy cow, I can't even believe it.  Thank you everyone so much for following us and supporting us.  For some reason, this is just really comforting, it lets me know that I'm not alone in all of this.
1-The number of hearts we need for Abby.  Just one.  I know it's hard to think about, and it seems like I'm being selfish asking, but we only need one, and I hope it comes soon. 

I know I haven't said it in a while...... But, thank you for all of the texts, phones calls, emails, facebook messages and comments, blog comments, visits, etc.  It makes a difference to all of us, it's really  helping get through this and to "endure it well!" 

Wednesday, June 29, 2011


Hey this is Britt.. Here are some pictures from the last couple of days..
Picc line- under the bandages

Maskin up!
Nice pants haha

Such a cute outfit

It was FREEZING! So even though we are not patients, we got blankets anyway :)

Prepping for surgery


Double Pager
Abby :)

The moniters we are constantly watching.. AGAIN!

The "X's" on Abby's feet so they can find her pulse easier

The day of 9 pokes

Picc Line


Weekly weight gain!

We're hoping for the 3rd floor today!!!

Abby is doing okay, she's hanging in there right now.  She seemed to do well on the milrinone most of the day yesterday, and her stomach ache was on and off all day.  Throughout the night her blood pressure was getting pretty low, at one point is was down to about 90/35.  This worried me a lot, but the docs only a little, they just kept a real close watch on all night and we'll talk about it when they do their rounds in a little bit.  She started on her coumadin again, which means we'll be trying to get that stable again too.  They told me that when we go home, Abby will have to carry an IV bag around that carries the milrinone.  So I guess she'll be toting her oxygen and her milrinone for a while; but, we can do that.  The plan for now is still to move her out of the ICU and up to the 3rd floor this morning, this is what she wants......and me too.  Abby said she doesn't even mind being in the hospital, she actually kind of likes it, probably because she orders pancakes, 2 orders of sausage, chocolate milk, and grapes (always green!) every morning. Plus everyone knows and loves Abby on the 3rd floor, it kind of feels like home to her.  Hopefully when the doctors make their rounds they don't change their minds and keep her in the picu longer, I think that would probably tick Abby off. 

Did I mention how much I hate the constant beeping in the ICU??? Every time something beeps, I get worried, it's got to be just a natural reaction.  Usually it's just saying that her IV is getting low, or the batteries are low on the cart, but It makes me nervous anyway.  Yesterday the monitor registered a couple of irregular heartbeats, but the doctors checked it out and said it was fine.  The monitor also shows her blood pressure, pulse, respiratory rate, and heartbeat.  The funny thing is, well maybe not funny-actually kind of sad, is that Abby knows what range each of these numbers should be in.  She also knows how to disconnect everything when she needs go in to the bathroom, then she just connects all of the cords and IV's and wires and everything again.  She's becoming a pro at all this, I'm not sure if that's a good thing or not.

I know a lot of people are wanting to visit us this weekend.  We would love to see you, but if you're sick, even a little, please wear a mask.  If it's an obvious virus, it would probably be better not to come at all right now.  We really don't want Abby to get sick and pulled from the transplant list.  Also, if you're coming, you probably should call me or text me first because who knows if we'll be at PCMC or home???  We could be either place.  But, we do love to see our friends!!! Keep praying for Abby, and I can't help but to think how nice it would be just to get her heart while we're already here!!  But then again, for her to get her heart, someone else is going to have to suffer a tragedy.  This is such a hard thing to wrap my mind around, and it will probably be something we think about every day for the rest of our lives, but it's going to have to happen for Abby to be okay.

Thanks to Rich for adding the new donation link at the top of the blog.  Lots of people want to help, but want to use a credit card, and now they can!  And thanks to all of you for following, supporting, and praying for Abby, let's hope for a stable day!!

Tuesday, June 28, 2011

a long, long, long night! Maybe, hopefully, only one more night in the picu.

Our long night turned into a really long night!!  They didn't come in to put in the picc line until a little after midnight.  The 2 hours leading up to that time was miserable because Abby had to go to the bathroom and her back was killing her, but she wasn't allowed to sit up or move her legs because of the cath surgery wound.  So, we just sat here watching the clock.  At 11:55, I couldn't stand it anymore, I called in the nurse and we started disconnecting her from everything so she could stand up and go to the bathroom!  She was happier after that, but still couldn't eat until they got the picc line in.  She hadn't eaten anything all day, so she was starving and craving a Snickers bar.  They finally finished getting the line in at about 2:00.  It was funny because they gave her a little pain medicine, but not a lot because they were worried about her blood pressure, so it just made her loopy.  She'd start asking about what they were doing, but would forget her question half way through and would just babble the ending.  We were laughing at her a little bit.  I was so glad to see it was one of my favorite nurses, Lacey, that showed up to do the line, we were fast friends last time we were here.  At 2:00 when they left, I gave Ab a candy bar and some chips, she's so spoiled these days, and at about 3:00 we fell asleep.  The ICU is the worst place to sleep....... constant beeping and people checking on Ab, and the lights aren't all the way off, and there's only a recliner to lay in.  So, I was so frustrated at 5:00 that I just woke up.  Luckily Abby slept until about 8:00.  She woke up with a stomach ache, we're not sure if it's because she's hungry, or the meds are doing it, or her heart isn't beating hard enough to get the blood to her stomach.  Hopefully, she'll start feeling better soon.  Her levels looked good all night. 

We just had the visit from all of the docs and the transplant team.  They think that We'll be in the picu until tomorrow morning, then we'll be moved upstairs.  They think that if everything goes okay, we'll only be there a couple of days, we could actually be home by the weekend.  I'm going to have to learn to administer Milrinone through her picc line.  This kind of thing freaks me out.  I'm sure I'll have a long lesson on this, then they said that have to contact home health care to get it going, I'm not sure why.  I'm not a good nurse.  Today is just going to be a mellow, sitting around day.  Maybe I'll be able to catch up on some sleep, but probably not.  Thanks for your thoughts and prayers lst night, the night was as peaceful as could be.  I'll post again if there are any new updates.

Monday, June 27, 2011

Back in the ICU, but now listed as status 1A

Today turned out to be not what we expected!!! We went in for her normal Monday clinic.  After I talked to the docs about Abby being more tired and the other little problems she's been having, and after they listened to her heart and heard a gallop they decided to run some more tests.  They scheduled her for a chest xray, an echo(this wasn't supposed to be done for 2 more weeks), and the big one-her cath test surgery which they did the second day we were here (they weren't going to do this until August).  So this is how our day went from there:

-Defibrillator monitoring-they told us that her pacemaker has been pacing her about 40% of the time.  this means that her pulse drops below 50 bpm 40% of the time.  But she hasn't had any major shocks.
-Vitals-Remember when we wanted her to gain weight?? well, now she had gained so much weight so fast that they decided she's been retaining fluid....not a good sign.
-Chest xray-things looked okay, but they found a little more fluid in the lungs
-Blood draw-They weren't going to do this today, because she was going to get immunizations, but had to because of her surgery.  Abby was a little ticked, but at least they only poked her once. 
- Immunizations-She had to get 3 more shots in her arms.  She was more worried about this than anything else so far!  But she was tough.
-Echocardiogram-Abby loves this, she says it's totally relaxing.  We got to watch Over the Hedge, one of our favorite movies.  While she was getting this done, I visited the medicaid office in PCMC and turned in the last of my papers!!! Keep your fingers crossed.
-Visit from child life.  They talked to Abby about the surgery and explained that they put a couple of little tubes up through her groin to measure the output of her heart.  She would be under anethesia for this, but it would help us understand a lot more about what was going on.
-Cath test surgery- The actual surgery only took about 2 hours, but we had to wait forever for an anesthesiologist.  They found out that her cardiac output is only 1.6, it should be 2.5.  This explains why she's been so tired.  They said that at least we caught it before she arrested again........scary!!! 
-After the recovery in the pacu (post anasthesia care unit)  and a bed opened up, we moved to the cicu (cardiac intensive care unit).  That's where we finally are now.....only 12 hours after checking in this morning.  It's been a long day!!!!

Because of the numbers they saw in the cath lab, she is now listed as a status 1A.  This is really good news, because it the highest on the list for a transplant, but it's not good news because it means her heart has gotten sicker and she's not doing so great now.  She's really sleepy tonight because of her long day, but she still has lots to do tonight.  They started her on a medication called milrinone.  This helps her heart function better.  It's kind of scary because it can cause arrhythmias and lower her blood pressure at first.  That's why we have to stay in the ICU, she needs to be closely monitored all night.  But because she's started on this, we got to move to status 1A.  She also is going to get a picc line in tonight still.  This is just like an IV that can stay in.  She needs this to administer the milrinone.  We will probably be here at PCMC for about a week, or until they've figured out how the milrinone is working.  I just think it would be easier to get just get her heart while we are here and ready!!!  Now that she is a 1A, it could happen fast....we really could still be home by Christmas.  I've felt all along it was going to happen in July, let's just hope I was right.

Just for a laugh....I failed the pager test today.  They gave me another pager to let us know when her surgery was done.  I was sporting 2 pagers for a while!  When it went off, I freaked!  I just started looking around trying to find what was beeping.  Britt said, "Mom, it's your pager!!!"  Then I didn't know which one, I was panicking a little.  Then when I realized what was going on, I couldn't remember where we were supposed to go!  So Britt and I wandered around a while, we lost Abby!  We went to the ICU, we looked where she had the surgery, we couldn't find her.  So, we just went back to the waiting room.  Luckily, we saw them wheeling her down the hall, so I took off running for her.  I decided I'm a freak.  I obviously don't do well under pressure.  We just better get her heart while we're in the hospital already.

I'm a little scared for tonight.  Please pray for a peaceful night and for everything to go as planned, they've already increased her oxygen to 2 Liters, because she's having a harder time breathing.  I'll be watching those monitors all night!  I will post again tomorrow, hopefully things will be more stable then and I'll know more.

Sunday, June 26, 2011

Soul Surfer and "Heart Mom" Poem

Well......I'm a little worried about Abby today. This past week she's been more tired, gotten dizzy sometimes when she stands up, says her legs feel like pins are sticking in them, and gets a little out of breath walking around. It's a good thing she goes to clinic tomorrow so we can figure out what's going on. We might have to change some of her meds or something. But then, sometimes, she seems great! Abby and Britt have been having a blast together, and driving me crazy! They've been staying up late and just goofing off, it's been fun. Abby will miss her a lot when she leaves on Thursday. I sent Brock to St. George yesterday on the shuttle. I hated doing that....I don't like to be away from the kids, but I have no choice. When Britt leaves Thursday we're going to have a long 2 weeks without them. Oh how I wish we could go to Hawaii! Abby, my dad and I are just going to try to make the best of it, so if you know of any fun things to do around here, please let us know.
One of my big worries right now is my dogs. My friend that's been keeping them can only keep them until July 14th. We haven't been able to find anyone that wants to temporarily adopt them, so I guess the next step will be selling them. This will be really hard on Abby and all of us, but I can't think of any other way. If you are interested, please just let me know. For those of you that don't know, they are 2-year-old shih tzus, there are 2 of them, and they are really cute. They don't bark very much, and they are just really easy to take care of. I wish we could keep them because they are the perfect dogs, but we can't have them here. If you know of anyone that can give them a good home just call me.
We went and saw the movie Soul Surfer this week. Abby and I had seen it before Abby had her little problem, but Britt and Brock hadn't. I'll tell you what, it was very hard to watch this time, it was like a totally different show. Britt had a hard time with it too, it was just too real. when the mom got the phone call and was rushing to her daughter, I could totally relate. It just brought all of the feeling right back. I almost had to walk out of the theater for a few minutes. But, it helped me realize something. At one point in the movie, Bethany-the girl who got her arm bitten off by a shark, returned home to a pile of mail from people all around the world. Many of them were letters telling her how she had inspired these kids and other people to do things that they never would have done without seeing her story. She talked about how her accident was so bad, but it brought about so much good. Maybe that's why there are accidents and natural disasters and people going through tough things. It gives other people the opportunity to do good. It really brings the good out of people, it forces people to step out of their normal routine and do something better, something different. If everything was always peachy, people wouldn't have this opportunity. I don't just made me think about things. Going through this has definitely helped us see the good in people, and it's made us see who really cares about the Doman family and what we're going through. We've learned so much from watching how other people are dealing with our situation. Thank you for teaching my kids that people usually want to do good and that they are there for you when you need them to be.
This is a little poem I came across on my new friend Kaidence's blog, her mom posted it, I thought it was perfect:
One day my world came crashing down,
I'll never be the same.
They told me that my baby was sick.
I thought, "Am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.
I will not give up on this child.
I will listen to your advice.
I will give my daughter any chance.
No matter what the price.
I will learn all that I need
To help my baby thrive.
I'll even use that feeding tube.
My child must survive!
Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
As I accept our fate.
When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my baby's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....
no matter how I try.
And yet, I trust you hold her life,
and guide us through each day.
My mind says savor each moment she's here,
but my heart begs, "PLEASE let her stay"!
From pacing the surgical waiting room,
to sitting by her bed.
From wishing for a good nights sleep,
to learning every med.
From wondering, "Will she be alright?",
to watching her reach out her hands.
With every smile my heart just melts,
despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger
(It's the door to her beautiful heart).
God must have known how much I'd love her
(Just as He loved her from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

Keep in touch, I will post again after Abby's doctor appointments tomorrow.

Friday, June 24, 2011

June 24th-1 month on the transplant list and lunch with a heart transplant recipient and her mom

Abby has now been listed on the heart transplant list for 1 month. I'm tired, and I know Abby will wake up and be tired too. She had a rough night with her restless legs, they just twitch every time she starts to fall asleep. We tried the bath before bed, the stretching, the massage......everything but the meds, but no luck. I guess it's time we switch to some meds for it. The problem is that they recommended 3 different things, and they all have their own set of problems:
1. vitamins with iron in them-the problem with this is that they contain Vitamin K which is going to affect her INR which we finally just got stable
2. Some med for restless legs but I can't remember the name. They said the problem with this is that is will probably get a lot worse before it gets any better. I don't know if we can handle a lot worse, last night was pretty bad!!
3. An anti-anxiety med. With this they are worried it will make her too drowsy. So drowsy that it might mask if she's having a hard time breathing. This wouldn't be good.
So, we're a little bit stuck. I will bring up my concerns in clinic on Monday. Somehow we've got to get some sleep around here. It's hard enough to cope with everything when we're sleeping, but everything seems even worse when we're tired.

My highlight of yesterday was when we got to out to lunch with a heart transplant recipient and her mom. Thanks DeeDee for setting this up!! Shauntelle and her daughter Kaidence are amazing people. I was able to hear all about her incredible story and how they survived it! They have been through so much....It makes what I'm going through seem easy. If you want to read her story, go to Go back to the very beginning and read it from the start, you will be in awe of her strength. She's also listed blog addresses for many other "heart kids" as they're called. I'm officially a "heart mom" now too! It was so good for me to listen to Shauntelle's advice for me on how to handle all of this, and to once again let me know that the feelings I'm having are normal.....I'm really not turning into a freak, really!!! 3 things really stood out to me, which are things that Paul also told us are:
1-The doctor's paint the bleakest picture. Don't worry about the statistictics they tell us, don't worry about the prognosis- things will probably be much better than they say. It doesn't mean we don't have a rough road ahead of us, we do, but it will be better than what they say.
2-There is so much good that is coming from this, let that sustain us. It doesn't make all of this okay, but we need to realize the impact we can have on the lives of so many people. They both said that they if they could go back and not have had to go through all their struggles...they wouldn't. They wouldn't take away what they've gone through because it changed the lives of so many other people. I pray that we can bring as much good from this as possible. I want our struggles to inspire and help as many people as we can. The more good that can come from this horrible trial we're going through, the better. Help me to know how to bring about that goodness!
3. Focus on the tender mercies and really pay attention to the Lord's hand in our daily lives. I have been noticing this, it's impossible not to. Little things happen every day, and they aren't coincidences. For example, when DeeDee emailed Shauntelle and asked her if she would spend some time with me and started telling her our story, Shauntelle said that she had heard a little about us and had just been trying to find a way to contact me so we could get together, but she wasn't able to. Just a coincidence that DeeDee chose to email her on that day?? I don't think so. There are little tender mercies all of the time, we just need to be watching to notice.

The whole conversation we had was perfect, there are many thing that were said that are going to help me through Abby's transplant and her life after transplant too. I know that we will stay in touch, it was one of those instant friendships. Thanks Shauntelle for helping me.

I think Abby is still doing okay. She seems to be a little more tired this week, maybe from being up at night, I'm not sure. She's had a few more headaches and sometimes just doesn't feel good, but I think she's okay. We'll find out more on Monday. Thanks for reading the blog and staying with us, it just gives me a sense of security to know people are still out there thinking about us and praying for us. Thank you for all of your messages and phone calls, they really do keep us going! We still have people stopping by almost every day, thanks for taking your time to see us, it makes a difference.

Tuesday, June 21, 2011

June 21st-It's all about patience!!!

Time to catch up on the last few days. It has been so good to have all of my kids here at the same time! It's the first thing in a month that has been normal for us. We've spent some good, quality time just being a family again. We've spent time at Temple Square, Gateway, playing Monopoly (Abby always wins), playing the golf card game at Jon's house, going to PCMC, eating dinner together, and just hanging out....and we still get 3 more days, then everything changes. On Saturday, Brock is headed to St. George so he can go to the SUU football camp with his team next week. If any of you know someone driving to St. George on Saturday, please let me know, otherwise I'll have to send him on the shuttle. Then next Friday, Brock and Britt get to go to Hawaii for 10 days with all the rest of my family. This was the trip that I've been looking forward to since Christmas.....but that's okay..... Abby, my dad, and I will stay here this time. It's really depressing, I love everything about Hawaii and I have been so excited, but I'll just have to deal with it. So, I'll have a long time without my kids, it will be hard, Abby and I will miss them so much. Sometimes, this whole thing really stinks.
Abby had her clinic on Monday. Everything still looks about the same. Her INR was even stable still, that was good news because we don't have to go back to PCMC until next Monday-a whole week off!! The Life skills person spent some time with Abby talking to her about imagery and relaxation techniques. I also had some questions for Dr. Molena. I was curious why they don't put artificial hearts in kids, she said they are still working on developing one small enough to work for kids and that right now the mortality rate is still too high. I asked if we knew why Abby's heart stopped when it did, why did it stop then, when we had no signs for almost 12 years? There was no answer for this, we will never know. My last question was one that I was scared to ask, but had to know. I asked how we knew that we wouldn't be sitting there in that office one year from now with Abby just feeling the same and still waiting for a heart. They told me that could happen, but it isn't likely. Most hearts, after presenting themselves with problems like Abby's, only last about 1 year or maybe a little more. All of this is just so scary, I hate really thinking about it. It still just makes me sick when I think what lies ahead for us....the waiting for the transplant, the actualy surgery, and post-transplant. This has changed our lives forever. It can be really depressing to think about, so sometimes I just try not to.
We received a call from the Make-a-wish foundation. This was exciting, but also made me realize how serious Abby's situation is. They are coming to visit with us sometime in the next couple of weeks to talk about Abby's wish options. I think Abby wants to travel somewhere, but then we'll have to wait until things are stable after the transplant. She talked about taking a cruise to Australia and New Zealand....I was okay with this, I think it sounds awesome! I'm trying not to influence her decision, I want it to be her wish, but I have lots of ideas of my own. Hopefully she'll think of something great, I think we deserve something incredible after going through all of this!!
This is hard, it's hard every single day. It's really easy for me to feel sorry for myself, but I just don't allow myself to, it doesn't do any good for me or Abby. I replay the day it happened at least once every single day, I don't want to, but I do. I miss spending my summer boating on the lake, hanging out at the pool, biking, spending time with my friends, going out to lunch, and just being independent. I feel a little trapped right now, I just don't have very much space or time for myself. I am definitely going to learn so much patience through all of this!!! I came across this quote this week, I think it's perfect for me right now:

"Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!" (~Elder Dieter F. Uchtdorf)

I hope I can continue to exercise faith and bear this burden with mental and emotional strength. I know I "have" to endure this trial, but can I endure it well?? I want to, I really want to....I just have to stay strong. Thanks everyone for your continued prayers. Please keep praying for us to have the strength to endure this, and to endure it well.

Monday, June 20, 2011

Temple Square and a Trip to the Doc. :)

this is how long her oxygen cord goes haha :)

CrossFit Dixie Honors Abby Epic Ninja Narwal Doman...and Raises Some CASH Too!

Hello friends! I feel so privileged to be writing today on THE Abby Epic Ninja Doman's's like a dream come true! Who am I? Well none other than the beloved 5th grade teacher of Abby...a.k.a....Sparky....or you can just call me Lesley...whatever! I was the most favorite teacher of all time for Abby until Mr. Murdock went ahead and saved her life...that pushed me to a close 2nd! :) But I'm okay with that...he deserves to be "the beloved" for awhile!

I'm here to let you all know about a little fund raiser we did for Abbs at CrossFit Dixie. Last Saturday was the day to honor Abby by doing a little workout called...none other than....ABBY! Kade and Kyle, the owners of CrossFit Dixie wanted to do a fundraiser to help out the Doman family so they made up a WOD, (workout of the day) in honor of Abby and named it after her! Now she's not only super famous because she's been on T.V....survived heart failure...flown in the Life Flight airplane...received a pace maker...and now she has a workout named after her! Sheesh!

Here's how it went...Kade and Kyle made up a workout that looked like this... was was made some people want to cry! Why would they make up such a tough workout and name it ABBY?...because she's TOUGH..that's why. It had to depict it's namesake...and that it did! :)

Here are some pics of the people who dared to try the workout..."Abby!"We also collected a little Ca-Cash to help out the Doman family! Thanks to all who came to workout...and to all who donated $! It was a great day!

Sunday, June 19, 2011

Triathletes and Crown Fight MMA fans come through for Abby!! By Aunt and Uncle Meri and Rich.

Two very different events were taking place on Saturday. The Utah Summer Games Triathlon and the MMA Crown Fights. The first.....We wanted to do something to help our niece Abby and her family, so we thought, how about we gather a few items that would appeal to a triathlete, have a raffle during the registration of the Summer Games Triathlon race, and hold the drawing just before the awards ceremony at the finish. I was in awe with the overwhelming support and want to thank my fellow triathletes, friends, and families that supported the cause for Abby. It was awesome and wanted to also thank those who helped with prizes and other support to make it happen: Race directors of the Summer Games Triathlon Colby and Jeff, Rebel Sports, Red Rock Bicycles, St George Running Center, Pro Triathlete Heather Wurtele, Swig, Perks,, Fargos, Bicycles Unlimited, Southern Ut Tri Club, and Adam at Festival of Sound.

Raffle At Rebel Sports
Triathlon Raffle Prizes

Racing with Abby's Purple Unicorn

The following evening, Crown Fights donated a raffle table at the Mixed Martial Arts Crown Fights at the Dixie Center. Thank you Crown Fights, Rebel Sports, Mesquite Extreme Power Sports, Costco, Super 8 Hotel, Shauna McCullough, Bloomington Golf Country Club, Max Ahquin, Dustin Dell and all those friends, families and spectators at the fight who helped support.

There were some amazing things that happened and I will share a few: One of the winners of the raffle came up on stage for his prize, accepted his prize and later returned the envelope to us with more money in it to donate to Abby. How awesome is that!! Another time there was a little boy that came up and didn't want to be in the raffle, he just wanted to give donation for Abby!! One of the best parts of the night was when Dustin Dell won his tough fight in the third round and some of people in the crowd were upset with the decision. Instead of letting it escalate, Dustin changed the attitude of the crowd when he got on the microphone and the first thing he said was to get over to that raffle table and help little Abby Doman!! WOW!!

We have been amazed to see all the goodness and generosity that people have and hope we can do the same and pay it forward someday.

We want to tell everyone thank you for your support!!

Crown Fights Raffle Table
Dustin Is Ready to Fight

Thanks Meri and Rich for the fundraisers and for posting this!!!

We would be in trouble without all of the hard work you two are doing for us!

We miss you!! Abby and Shell

Friday, June 17, 2011

June 16th- A much-needed grateful List

I feel like it's time for a grateful list, sometimes I forget and I need to remind myself of the good things that are happening.

I'm grateful for:

-Candice's sister Tricia that brought us dinner last night. I did not feel like cooking at all and this sweet lady, that doesn't even know us, brought us dinner. It was the perfect night for that. Thanks Candace for setting it up, and thanks Tricia-you made my night!
-My niece, Mina. She's keeping Abby company..... a lot, which takes some of the pressure off of me and allows me to take care of some other things that need to be done.
-Lesley.....for everything she has done for us, and there's a lot. The yard sale, the t-shirts, the bank, crossfit fundraiser, the almost daily phone calls, her cute girls, It never ends. Love ya Les.
-Shave Ice, they can always make me feel better :) good thing there's one close by our new place, and they have strawberry pineapple with cream!
-Movies-whenever I get really tired, I know that if we go to a movie, Abby will be entertained...and I'll sleep. I can't help it, no matter how good the movie is, I always fall asleep (but usually only for about 10 minutes, unless the movie is really boring)
-Sandy, my principal, and Desi, my vice principal for helping with all of my paperwork for my job. I can't believe I've asked them to do things for me, like they're not busy enough. I also know that they will both do whatever they can to help me with my job and dealing with the district. That's one less thing for me to worry about. Not only that, but they're my friends too and we've spent lots of time talking and visiting! Thanks to you both, I can't wait to get back there. Sorry about all of the responsibilities that I had that you've had to divvy out to other people. I promise to work even harder when I get back.
-Abby's doctors at PCMC for allowing her to just get her finger pricked for her INR and not a poke in the arm. We were informed yesterday that she's the only patient they allow to do this. Abby's response, "Now I feel reaaaalllll special!" Thank you, it makes a difference to Abby.
-Cozz and Ali.... always. But especially for when they talk me through my breakdowns. They always know what to say to bring me back and I don't think they've gotten sick of me..... yet.
-When I'm just sitting there, and I get a message from someone, telling me that they're thinking of us and they love us.
-Crayons and coloring. This can be very therapeutic. Maybe not so much for Abby, but definitely for me. It's something I can control.
-Meri, my sister. I just dumped all of this fundraising stuff on her. She told me it was like having another job and her phone never stops ringing. Thanks Meri, I know it's crappy, but we need it. I wouldn't be able to do it without you.
-Paul Cardall's phone call to me the other day trying to help me understand all of this. He's a very knowledgeable and spiritual man and his words were helpful. Thanks for taking your time for me.
-My car. It's had a lot of problems lately, it seems like I have to keep putting money into it, but it got me to St. George and back last weekend. I hope it can hang on through all of this and all of the traveling we're going to be doing. It better get tough before the snow comes though!
-Brock and Britt and that they will be here all next week with us :)
-Diet Dr. Pepper
-All of you reading my blog-your support is awesome! My friend Whit asked if I'd googled "Abby Doman" lately. I couldn't believe it, she has like 3 pages of stuff! It's pretty incredible, you are all the best and we will never stop appreciating you.
-That Abby still feels good and not much has changed yet.
-An idea I have about a book that Abby and I are going to write together. In my mind, it's just to do it!
-My brothers-I'm so glad they both live close enough to spend time with us, it helps break up the time and it's good to see them more often.
-Neal A. Maxwell's talk-But for a Small Moment. If you haven't heard or read it, you should. It explains so much. I will be blogging more about this another day, I just need a little more time to sort things out first.
-Pandora radio and the Five for Fighting channel. Stop laughing Britt!!!
-My phone....holy cow, I would be lost without it! I have to stay connected to everyone, it's vital.
-Advice from friends. I really am listening and trying some things, I'm just a bit skeptical sometimes and not real trusting. Don't give up on me though, keep pushing it.
-That I'm getting a little less mad and a little more accepting. I'm not there yet, but I'm getting there.
-Most important....Abby's miracle and that she's still here with us!!!

I thought that would be hard today, but it wasn't....and I feel better. It's funny how this list can change from day to day. I bet if I would have made a grateful list one month ago it would have been completely different than the one today, and it will probably change the next time I write one too; But the thing that stays the same is that I always feel more hopeful after and Diet Dr. will always be on my list!!!

Thursday, June 16, 2011

June 15th-How am I really doing and Lagoon vs. Dentist???

I had a hard time sleeping last night; in fact, I didn't sleep at all. I've been doing so much better...I had 2 really good nights in a row, and then last night I was up all night again. I don't know why, but I know it's going to be a long day.

The dentist went okay. Abby had a cavity in one of her back teeth, my brother didn't think it was very deep so he started to fill it without numbing her first, then he realized it was deeper than he thought, so he asked Abby if he could numb it....Abby's response-no way!! She said she was just too sick of needles and could handle it just fine without a shot, and she did, she said it hardly hurt at all. Now that she got her dental exam, we are completely ready for the transplant....bring it on!

Britt and Brock had a blast at Lagoon. I wish we could've gone with them so bad, I love Lagoon. Abby said she hasn't even been on Colossus yet because we haven't been there in so long. Brock let us know that most of the rides had a sign posted that said you shouldn't ride if you have a heart condition anyway, so I guess it wouldn't have been fun if we did go anyway. I hope with her new heart she can ride the rides! One reminder for might want to review your text messages before you send them! Hahahahaha I can't believe Britt walked around Lagoon all day, less than 2 weeks after her knee surgery! I'm pretty sure that's not what the doctor ordered! It was fun seeing Meri and Rich and the kids this week, we sure miss them. We're used to spending a couple days a week together, so this is hard. Abby especially misses Leah, she loves her like a little sister. We can't wait to get back to St. George for so many reasons! Britt and Brock will both be gone the rest of the week for youth conference. It's always so hard to see them go, Abby hates it too. This is one of the hardest things for me, not being together is the worst. I'm dreading when school starts and football and soccer start and we just won't get to see each other very much. It's really crappy, but I don't know any other way. Somehow we're just going to have to make it work, we have no choice.

I had 3 different people tell me yesterday that being single must make this so much harder for me and that they can't imagine going through it alone. It is hard, really hard, but you've got to understand that I've been single for a long time, it's just what I know. I had never really thought about that making it more difficult. But it sure would be nice to have another income right now, or to have one person staying in St. George with Britt and Brock and the other one here with Abby, or to have someone else that knows exactly how hard this really is. But from my perspective, it's okay, it's just how it is. Don't feel sorry for me because I'm single and doing this alone, just feel sorry that we have to go through it at all because it's not fun.

I've also had many people ask me how I'm doing......really. The truth is that there are mornings that I wake up and just don't want to do this anymore, and there are times when I think that it's just too much for one person to handle, it's too big for me and I can't do it. But most of the time, I just do what needs to be done. I'm not strong like so many people are telling me, I do it because I have no choice, I have to. Lots of times I still get a shock when I think that this is really happening to us, to my kid! Every time I heard the announcer at the football game last Saturday talk about Abby's story, it hit me that he was talking about us, it's still so unreal. I still get real panicky if I think about being here for a long time. I have to go back to short term or I really get nervous and start losing it a little. Financially, things are going to be extremely difficult. I opened 4 bills last week that totalled the amount of money I made all of last year. I will only get paid through the school district until September, and then I lose my benefits in November. This is scary, but I'm working on my options right now. I just have to believe that we will be back in St. George soon, this is the only way things will work out for us. I get mad when I think I how hard I've worked the past 10 years to get my family where it is now, and I could lose it all. It just doesn't seem right. But I also know that somehow, things are going to work out. So, we have our ups and downs. Overall, I think we're doing really well considering everything that we are going through right now. Abby is doing great! She feels good, she's spending lots of time with her cousins and talking to her friends. She loves it when people stop by, even if it is just for a quick visit. I love it too, it breaks things up a little bit. We need to take advantage of this time that she's feeling so well, because we don't know how long it will last. Feel free to call, or to text, or to email, or to comment on this post. We do love to stay connected to everyone, it helps us. Try not to worry about us, but keep thinking about us and praying for Abby. It's just a waiting game now. We are grateful for all of you that are still sticking with us and are in it with us for as long as it takes, thank you!

Tuesday, June 14, 2011

June 13th-A visit with another heart kid's mom

I think I've finally recovered from my trip to St. George, I did love it...every second of it, but it wore me out too. I forgot to thank everyone that came up to me and told me that the blog or the Doman family have touched or inspired them in some way. That's good to hear, we need to know some good that is coming from all of this.

We have been having some fun this week. Meri and Rich and their kids, Britt and Brock and Brock's friend, Steven, and my dad are all in Salt Lake right now. We got to go see Super 8 on the Imax screen....loved it too! Abby was pretty scared and sitting real close to her cousin Mina in some parts. We also went out to dinner last night to one of our favorite Salt Lake places-Kyoto's, good food there. Today, however, is really not fair. Everyone is going to Lagoon, except Abby and I, and we have to go to the dentist. I love Lagoon, and I HATE the dentist, even if it is my brother...sorry Jeff. Abby isn't supposed to have any cavities or dental problems when she has her transplant. I guess there's a strong correlation between dental and cardio problems, kind of weird I know! So we're going to go get our teeth cleaned and taken care of, it needed to be done anyway...but I'd rather be riding on the Rocket at Lagoon!

Yesterday, Abby had her big Monday doctor's appt. or clinic as they call it. They started off by taking her vitals, everything looked good, she even gained one pound last week, way to go Abby, no feeding tube :) Then they took her back for another echocardiogram, this is just an ultrasound of her heart, it doesn't hurt at all; In fact, it's pretty relaxing, Abby almost fell asleep. They said everything looks the same as 2 weeks ago, and she won't need another one until next month. Deep down I was thinking, what if they looked at the results and her heart was normal again and they said it was just a true miracle and we could go home and everything would be back to how it was 1 month ago. Can you even imagine how awesome that would be? It's fun to think about, but I know it can't happen....ever. Then the docs all started coming in and listening to her heart and checking on her. It seems like everything is pretty stable right now. It makes me wonder if her heart has lasted 12 years without any problems, why can't it just last another 12? why is it all of a sudden so vital we get a transplant? Who's to say that a year or even more than a year from now, we won't be sitting here doing the same thing....Abby feeling good and just waiting on a heart. I would be completely crazy by then, we need to get her heart soon, really soon for us all to keep our sanity. Her INR was too high....again. 4.6 today, not critical, but almost. I guess we'll be adjusting her dose again.

One cool thing that happened while we were there is that they brought a lady to me whose son was at the hospital for his yearly appointment. He was 16-years-old and had received his heart transplant 2 years ago. He now plays football on his high school football team and his mom said he is just a normal kid now, you would never know. It was a little discouraging when she told me that they had to wait 10 months for his heart, and he got really sick and almost died before he recieved his heart. But she just gave me a big hug and told me that she understands, she knows how hard this is for me, she knows that there is nothing harder for any mom to have to go through, she knows that it's harder for the mom even than for the kid going through it, she just gets what I'm trying to deal with. She said that it may seem so overwhelming, which is exactly what it is, but that we will get through it, we will eventually be okay. It was good to talk to her and to hear her validate my feelings right now. She let me know that how I'm coping is normal for what I'm going through, I'm not losingit, I'm okay. What a great experience; In fact, I'm going to count it as another tender mercy. She was there at exactly the right time for me.

The comment of the day was when we were driving to PCMC and Abby said she had a little, tiny sliver in her finger, and it was very small. When I told her we would have to take it out so it won't get infected whe said, "Oh no, isn't that going to hurt so bad?? I don't want to do it!! Don't make me take it out!" Britt and I just laughed, with everything she's had done to her the past 3 weeks she's worried about getting a little sliver taken out?? Britt's response was, "Abby, you had a freakin' chest tube in your didn't complain when that was taken out, but you're complaining now?? are you kidding me?" It was pretty funny. We did get the sliver out and it didn't even bleed for that long, we were worried about that because of her INR level, but it was okay.

I was reading back through some of my old posts yesterday, and just to clear things up....I do know the difference between here and hear, and their, there and they're, and I usually am a good speller. I don't go back and edit, I think I'd probably get embarrassed about some things I've shared and delete it, so I just type it and then publish it. Just remember, I've been on limited sleep and brain overload, but I really am capable of being a teacher!!

Sunday, June 12, 2011

Pics of Arrowhead yard sale and Dixie Rebels semi-pro football game

Hey it's Britt again! Saturday was such a great day! Thanks to everyone that put time and effort into it :) Here are some pics! Thanks to Jacquie Tui for some of these pics!

momma coz, momma doman, momma thacker
we won :)


awesome :)

we will be spending lots of time at Fargo's thanks to him!

the wonderful people that put the garage sale together :)

cute girls that had a lemonade stand for abby


hawt :)

yeaaaa :) foxy.. wow someone professional must have done her hair haha :)

unbelievable! It all mostly sold!

cool poster :)

getting ready!

June 11th-An extremely grateful post-thank you all!!!

This is going to be my blog where I'm going to try to express my gratitude, but no matter what I say it's not going to be enough. I cannot put into words how incredibly thankful my family and I are for all of our friends and for the community of St. George. We are so completely blessed to know all of you, thank you for your support of Abby and love for us.

Yesterday was an unbelievable day. I'm so glad I was able to leave Salt Lake for a day so that I could be a part of it all! I almost didn't make it to St. George. Brock and I left Salt Lake on Friday afternoon, and by the time we were to Draper, I was ready to turn around and go back. I just didn't feel like I should be leaving Abby, I felt like a bum for ditching her for the day. I knew she would be okay, she was with my mom and dad and her cousins, but I still felt like a bum. Right when I was ready to exit the freeway, my phone rang, it was Lesley-good timing Sparky! She told me just to keep on driving, I needed to be there. Another quick call to Ali, and I knew I should keep going! It's such a good thing that I did, because If I wouldn't have seen everything that was happening, I would never have believedv it!

The yard sale at Arrowhead was totally mind boggling. I honestly could not believe it when I walked into the gym at the school Saturday morning. To say there was a lot of stuff, is the understatement of the year. There wasn't even room to walk, and it was piled high! Seeing all of my Arrowhead Elementary friends walking around with their “Team Doman” shirts on was the greatest. So much time, so many donations, so much love. I loved it when my friend Tui said, “There's a lot of Doman love in this room, it's just filled with love!” I walked in and just's just so hard to think that so many people would do this for us! I just wish Abby could've been there, because it's hard to even explain, I can't put it into words. Thank you Les for the idea and the organizing. Thank you Brenda, Tui, and Cheryl and the rest of the Arrowhead team for the hours spent collecting, organzing, moving, pricing, etc. etc. Thank you Meri and Rich for the cool banner that was hanging up and for organizing and selling the food. Thank you everyone for countless hours that you spent on us, and thank you to everyone that donated your stuff, and for shopping there! I could not believe it when I heard the grand total! I think I was shock. I hope you know that the money will not be wasted. Like I gratitude can't even be expressed. It just proves that people for the most part are good, and when the opportunity arises for people to show that goodness, they're ready. I could feel the support and love you have for my family, and it felt so reassuring. It reminded me that I don't have to do this by myself, there are so many people that will be there for us when we need it, and that is comforting. Thank you....We love you.

But, the love didn't stop there......then we got to go be a part of the Dixie Rebels semi-pro football game! It was so incredible, we felt so honored to have that game dedicated to Abby, and we definitely felt like the guests of honor. Tia, Wayne, Andy-thank you. Even though I just met you for the first time, I felt like we'd been friends forever! I could tell how much you cared about Abby and about us, you made us feel like gold! It was awesome walking out to be the honorary captains and participating in the coin toss-way to flip that coin Brock, and yes.....we did win the toss, that's what started us out on the winning night I'm sure! I know this sounds corny, but standing on the sidelines with the team by us during the National Anthem was an experience I'll never forget....just knowing that so many people were there supporting us, supporting Abby, made us all want to cry. I know Britt didn't want to go on the field with us, but I'm so glad she did, she also needed to be able to experience that. I loved sitting in the stands during the game and visiting with friends and seeing people that I haven't seen for so long. I just felt so loved, so cared for, so protected, it was just awesome. When I called Abby and tried to explain it all to her, she just said she wished she could be there so bad and tell them thank you from her, and that she gets it....she knows what's going on, all the effort, and she thanks you so much! When the box of money was presented to me at the end of the game was when I ran out of words, I just didn't even know what to say. It's something that can't be expressed, it's too just too big for some simple words. I just wish there was some big way for me to thank everyone that was there supporting us, but I just don't know what to do. My sincere thank you will just have to do. Like I said above, we are so completely blessed to be able to be a part of the community of St. George, there is no better place to live, we couldn't ask for anything more.

For those of you that were there in St. George that I missed seeing or didn't get to spend the time with you, I'm sorry. I have to admit that the day was a little overwhelming to say the least. I was so tired by the end of the game that I could barely keep my eyes open, I think I was emotionally spent. I'm sorry if you felt shunned by me, I didn't mean it. I wish I could just sit and talk to everyone. There are so many people I know I need to thank even more than I have, but I have to get back to Abby now, I need to take care of her again.

Lessons to be learned from the past couple of days are:

1. Most people are instinctively good and want to help. We have received so much help from people we don't even know! For all of you that have helped us, I hope it felt good, I hope you feel better for helping us. I know it made us feel incredible and I want the same for you. Feel good about what you've done and remember that feeling. I can't wait until I'm on the other end of things and I can somehow be returning all of this goodness. The day will come, and we'll be ready. I feel like I owe so many people so many things, I just can't wait for the payback. I know my day will come.
2. St. George is a great place to live. Now I know why we made the move 6 years ago, it was so we would have this support when we needed it. I just can't believe how a community of that size can come together for us like it has, it's simply amazing. We love the people in St. George. For those of you that live in St. George, I hope you realize how blessed you are, don't take it for granted.
3. It may not seem like it, but the way you treat other people and the relationships that you form with people is what is most important. I feel so fortunate that I have met so many great people and that they are a part of my life and my kid's lives. I'm so lucky to have been able to take the time to talk to people, I know it's way more important than anything else I've done. Everyone has a story and it's fun to talk to people and get to know them. Knowing so many people and spending time with them has made me a better person. I know that my Heavenly Father us comforting me through all of you.
4. This next one took me a few weeks to figure out, but being in St. George this past week made me realize that even though we are going through such an incredibly hard time right now, we are being blessed more than ever before. While the worst thing is happening to us, the best things are too. I guess that maybe it's the Lord's way of keeping things in balance and making sure that we know He is still there. We just need to continue to keep things in perspective and focus on the good that is coming from all of this.

Thank you everyone! Come visit if you're passing through Salt Lake, and if you live in Salt Lake, you should be visiting us anyway! Just call or facebook us first to make sure we're around. Feel free to comment on the blog, so many of you are reading, but I don't know what you're thinking. You can also facebook message us if it's more personal. We love to hear from you! I still love your text messages and your emails. After this weekend, we feel so loved and comforted and it feels good! Thank you!

Friday, June 10, 2011

Pics of alpaca farm, Sugarhouse Park and KSL

hey it's Britt again! I finally got a hold of the camera so I can download some more pics! enjoy!

alpaca farm


no comment...


results from pokes

cutest kids ever!

pedicures and one manicure

getting ready for the news! :)