Libbi's Christmas Gift

We delivered the gift to PCMC on Monday night. To read more go to Libbi's Christmas Gift blog.

All is well

I was a little freaked out last night but everything was just fine! Her heart function is great! We don't take her back for 6 whole months!! Wow. We did find out some things we were unaware of though. I think that'll happen everytime we go probably. One thing i was wondering about was what her actual diagnosis is. At first it was Ebsteins anamoly, with a small RV and a VSD. Then it seemed to me that she was more like HRHS. I asked him today and she actually has both, which he said they have never seen before at PCMC. Ebsteins is very fatal but because of her VSD, her heart is functioning well. Weird i know. He also mentioned she has tricusped atresia. I hadn't heard that before. Maybe if i knew more about anatomy i would've known that but i didn't. So the final answer.. He said she would be HRHS. She is not the average HRHS patient, her condition is very rare. Each heart defect is so different, no two babies are exactly the same so it doesn't make me nervous that she is rare. It just makes her special :) He said she is going to need the Fontan around 2 or 3 years of age, and he said that in Utah, or higher elavations, they usually need is sooner rather than later. I'm ok with that. Another funny thing he said (well not funny) is that after her Fontan, we may want to consider moving to sea level! We both started laughing thinking he was kidding. He was serious! He said they do better at sea level than in the high elevations! He did say there are plenty of Fontan patients here in Utah and they do just fine so no worries, we aren't moving :) We were joking telling him we have never left a 10 mile radius our entire lives! We are not moving to CA. Grammy thinks she should move to Disneyland with Libbi! Anyway, it makes sense, i just had never heard that. I love Dr. Menon, he is so great! He is so personable. Everytime we go he asks about our other kids, who he has never met, and he always asks how Kurt's job is. He is way super nice. If anyone needs a good pediatric cardiologist, he's your guy! So today is a good day! O and LIBBI GOT HER FIRST TOOTH THIS MORNING!!!!! Now i have to buy 3 kids meals! Ha ha just teasing, no nuggets yet Libbi Lou :) :) So as far as the blog goes, i will keep it open but there will probably not be many updates. I will post her monumental successes but if you want to keep up with the everyday craziness of our family please send me your email and i will invite you to our family blog! mindidixon@msn.com Also, check out the blog named Libbis Christmas Gift on our side bar to see what we will be delivering on Monday to the familes in the PICU!
Thanks and have a wonderful holiday season, i know we will!!

December 18

Sigh*** Tomorrow is December 18. The day we found out that our lives would forever be changed. In a good way :) I feel like Christmas 2008 and Christmas 2009 have just meshed together with everything in-between being a blur. We were told on December 18, 2008 that our baby girl had a heart defect. They weren't sure what, they just told us that she would need surgery within the first week of life, and that i would deliver her at the U of U. That was all the information we received that day. Ironicly, tomorrow just happens to be Libbi's cardiologist appiontment with Dr. Menon. This will be her first one with him since surgery. We went in for a post op appt, but not with him. I debated changing the appt when i realized it was December 18. I didn't. I am not superstitous. I'm hoping to turn it into a good day. For this year at least. It will always be 'THE DAY' i'm afraid. Sorry to Kurt's brother, James, who has a birthday this day, i will always remember it as a bad day. I remember going to Javiars for his birthday dinner and telling Kurt not to tell anyone. After dinner i went shopping with Kurt's mom and when i went to pick her up, i went in and told his parents. I don't even remember telling my mom, or anyone else, so if you do tell me? My brother had a baby December 14, just 4 days earlier. I didn't tell them for a while. I remember going over to their house and having to leave because i was so emotional seeing their sweet baby girl. They probably thought i was so rude. I felt rude, but i didn't know how to control my emotions at the time and i didn't want to spoil their new baby fun. My good friend, Natalie, had a baby girl on December 19 and i remember going to see her in the hospital. I left with our neighbor and i started crying. I didn't know how to keep it in. Natalie knew something was wrong, as hard as i tried to hide it. She called the next day to see what was going on. These all seem like such a long time ago. It's hard to believe it's only been a year.
We saw the perinatologist on December 23, he didn't tell us much more, only what he thought it was (TOF) which it didn't end up being, and that we needed to consider having an amnio done to see if she had downs syndrome. *Sigh* Merry Christmas?!? We tried. I remember Christmas Eve with Kurt's extended family and again, i told him not to tell. A few already knew and showed their concern. It was a hard Christmas Eve. I don't remember Christmas being too hard. I do remember my dad and Janiel giving me a coat and blanket for our baby and it was hard not to cry. But i didn't until later when they were gone. I did good. I did it for my kids, so they wouldn't have a sad Christmas. I don't remember anything else about Christmas day. It wasn't until January 15 that we went to see Dr. Menon at PCMC that we got more answers. That was a looonnnggg 3 and a half weeks!
I am really nervous to go tomorrow. She is fine. How could she not be? She plays, eats, sleeps, laughs, giggles, crawls, stands up, back talks (yes she really does!), pulls my hair, throws her food, throws fits, smiles, and melts our hearts! She is fine. I would know if she wasn't, i just know it. I know i will probably feel this way every time she has a checkup. The disease is blind. It sucks. But at the same time it is GREAT, we just go on living not even realizing she has a problem because she looks and acts fine! She is fine. I will re-assure you after i am re-assured tomorrow morning. Until then, good night and sweet dreams :)

Libbi's b-friend

Meet Cohen. Cohen is my good friend Jamie's baby that was born just one week before Libbi. Our other kids are the same ages as well. And the opposite sex so they are already arranged for marriage! When i found out Libbi was a girl i told her that she was having a boy because that is just how it works with us! She didn't find out until he was born and sure enough it was a boy! Libbi and Cohen met for the first time the other night at our friend Christmas party and can you see that Libbi doesn't get out much?!?! Ha ha she is SOOO happy to be playing with kids! She had so much fun crawling around and playing ball with Cohen. It was adorable.
Look at her already bossing him around. He's gotta learn sometime that the girls are in charge, right?
... and she's gotta learn that when the boys are done, they just knock you over, crawl on top of you, and leave you in the dust! Ha ha ha They had fun playing together :)

Another milestone

Now she's standing! I went in her room and sure enough, she had pulled herself up! She was standing there smiling with a scrunched up nose (her new habit). Guess it's time to put the crib down a notch or two! O and she climbed up a stair. She's wearing me out, before long she's going to be driving! She's going to be just like Jerzi i can already tell. We call Jerzi a bull in a china closet, everything she touches either breaks, ruins or spills!

Bulldog and baby legs

Do you see why i say she looks like a bulldog? On all fours it's even better!! Love those cheeks!!


We finally got her first dose of synagis, along with the H1N1 booster and prevnar. Yikes. They keep assuring me it's fine so i'm hoping 'they' are right. It scares me alot to give her so many shots at once.

I think these baby legs are the perfect thing to wear when getting shots! They keep her legs warm without actually touching her ouchies! Anywho, theres my plug for baby legs :) Plus, how adorable!?!

Hold it missy

Lil Miss Libbi thinks she's all grown up!! That is her pulling herself up on the chair!!! Slow the heck down! She is all of a sudden doing EVERYTHING and it's freakin me out.

She is feeling better, her cough is going away a little at a time. The H1N1 came back negative so they figure she just has a nasty cold, with double ear infections.
2 side notes. ..

1. It is not 01/02/2005, the kids must've got my camera, it's 12/01/2009.

2. Is that spilled milk on my floor?? Guess i better mop tomorrow :) Good night!!

Sick??

Libbi has been coughing pretty badly every night for the last week, but in the day she is fine. Last night i finally decided enough was enough so i took her in for a check up at the after hours at Mckay. Come to find out she has double ear infections and some sort of virus. The doctor said her nose and throat both looked pretty bad. I had no idea she was sick, she just seems so happy! I thought maybe her o2 sats were low at night, and that was why she was coughing, due to lack of oxygen. Nope, she really is sick :( They tested her for H1N1 and we'll hear the results from that in the morning. Cross your fingers it's just a cold virus and not swine flu. I asked how it could be swine flu when she isn't fevering or throwing up and the doc said she could just be in the beginning stages of it. I hope not. Stay tuned.. for now we patiently, and happily (she is grinning from ear to ear as i type) wait..

A little tumble

What baby would fall down 14 stairs and come out laughing? You guessed it. Only Libbi. She has been crawling around like a mad woman lately so we put a chair in front of the stairs. Well today I was busy with hair and Kurt was getting Christmas boxes upstairs and one of us forgot to put the chair back. I heard her falling and went running over just to see her hit the bottom. I booked it down the stairs sobbing and Kurt came down right behind me. I picked her up, she looked at Kurt, grabbed for him and smiled. What? You just fell down the stairs Libbi, you can cry i promise! Nope, she was just fine. As for me, i'm still a little shaky from the incident but happy to know that nothing will drag her down, she is one tough cookie!!

Sitting, crawling and cheekers at 8 months!!

8 months old today!! Wowza! Libbi is getting so dang big i can't hardly stand it! She is all of a sudden doing everything, or maybe i'm just letting her do things now? She is crawling, sitting up, eating some solids, holding her own bottle, and finally sleeping better!! We love you Libbi girl, you are a rock star!

She is getting around very good these days, i had to actually pull out the kitchen chair to block the stairs! Here she is once she got what she was going for.
Gettin there!!

This is Libbi sitting up all by herself! Also, just a side note, but how cute is her outfit?!? I have an obsession with Ross lately.. $5! Ya i know, i'm a bargain shopper :)

Whoa... keeping balance.

This is her bulldog face. Her cheeks are so huge I love it!!

Happy 8 months Libster! You're on your way to 1.. slow down!!!!!

She's a butterfly

If you haven't listened to the new song on our playlist it is called 'she's a butterfly' by Martina Mcbride. It is my new favorite song, reminds me of Libbi :)

Here are the lyrics but if you have speakers turn it up so you can hear it!

She remembers when she first got her wings
And how she opened up that day
she learned to sing
Then the colors came, erased the
black and white
And her whole world changed
when she realized

[Chorus:]
She's a butterfly, pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows she's so glad to be alive
She's a butterfly

Like the purest light in a darkened world
So much hope inside such a lovely girl
You should see her fly, it's almost magical
It makes you wanna cry, she's so beautiful

[Chorus]

God bless the butterfly,
give her the strength to fly
Never let her wings touch the ground
God bless the butterfly,
give her strength to fly
Never let her wings touch the ground

[Chorus]

God bless the butterfly,
give her the strength to fly
Never let her wings touch the ground
God bless the butterfly,
give her the strenght to fly
Never let her wings touch the ground

This and that

In the last week Libbi has decided to sit up on her own, crawl (or army crawl, depends on the day) and eat some baby solids. She has suddenly grown up :( I can't handle it. She makes us smile every day. We went Friday to her 6 month well child visit, she is actually 7 1/2 months but we're playing catch up from surgery. It was 6 weeks post surgery on Friday so time to start the vaccine catch up game! She got the influenza A vaccine(or seasonal flu, whichever you prefer), YAY!, and everything else but the Hep B and prevnar. In 2 weeks she'll get Hep B then in 4 weeks she'll get prevnar and possibly start with synagis shots once a month. That is the RSV vaccine. When the boosters for H1N1 and influenza A become available, that is IF they do, she can have them whenever, even the same day, so no spacing required there! We just have to wait 28 days from the first ones so first of December we'll start the search again. Here are her 7 1/2 month stats.
Length 26 inches 25%
Weight 15 lbs 7 oz 18%
Head 43cm 48%
At least we can always count on her head being big! It runs in the family, starting with my dad!! His name is Grandpa Ted, but we call him Grandpa Head!! Ha ha no joke, the kids even came up with the name all on their own when Koy was 2 i think. Not that they noticed his big head, just got Ted and head mixed up, but hey it's fitting! ..and that's the only thing that fits his head.. ha ha i'm on a role i better stop! No fun teasing someone when they can't defend themselves right??

Here's some cute randoms of Libbi the last week.
GOOO Broncos! They play tonight and are 7-1, we're hoping for a victory!


Twin Fifi's. This is her cousin, Anna, they are so cute together!
We were having fun with the wig on halloween! I love her big huge eyes in the picture!
And finally you'll be glad to know i've added a widget that can show me where and when people look at the blog so i'm keeping Libbi's open. It can't show you who exactly but it'll say where they're from. That makes me feel a little better. Our family one will still be going private but i can't do it with hers, there's to much support through blogging for families that have children with medical problems. I just ask that if you read our blog regularly, leave a comment once in a while so we know who's looking! Thanks!! Have a great day!!

Going Private :(

I am super sad to announce that we are going private with the blog. We have had an anonymous person leaving comments that aren't very pleasant to read. Not on this blog, but on our family blog. It made me realize how many people can read these blogs and I don't even know about it. It breaks my heart because i found alot of new heart friends and support through blogs :( If you want to continue reading our blog please leave me your email. I will check often and delete them as soon as i get them so they won't sit for long. If you are uncomfortable leaving emails on here, send me a message on facebook. I'm so sorry :( :( :(. I hate how one person can ruin it for many.

Libbi...

...FINALLY got the H1N1 vaccine! After a few weeks of stress and phone calls she got an appointment yesterday at the health department. I even snuck my other two in with us so they got it as well. Well, i didn't sneak, just took them and asked if they had any mist to spare and they did! It was a relief but now i worry..did i do the right thing? I really thought and prayed and even fasted about it and felt it was the right thing to do so i hope i'm not dissapointed. Next up.. the 2nd booster shot due in a month. Will probably be the same run-around but for now i feel at ease for a moment. She gets to start catching up on her regular vaccinations on Friday. 6 weeks post surgery!! I can't believe it, time flies! We've got to go clear back to half of her 4 month, then do her 6 month. On top of that, her 2nd H1N1 plus the regular seasonal flu vaccine (influenze A) whenever it becomes available. AND synagis (RSV) when that hits. Blah! Too many shots for her tiny legs. But like i told the nurse yesterday when she pricked Libbi and she didn't even cry, she's had worse~!

Libbi Lou Lou

Just a quick Libbi update. She is doing so great! She has an appt for the H1N1 on Monday so that will be a relief! She is growing so darn fast i can't even believe it! Some things she's doing...
**She has started eating baby food, just once a day, she likes carrots but wasn't too hip on the green beans!
**She moves all over the floor, she will be crawling soon i'm afraid :( She gets up on all fours, the kids think its really funny, i'll have to get a picture of her doing that.
**She has started to recognize me! I love that, but it can be hard. If i walk out of the room she will cry, she doesn't like to be with anyone but me or Kurt when she is tired and sometimes not even Kurt!
**She's sleeping a little better, she still wakes up at 4 or 5 to eat but that's better than it was for a while.
**If you tickle her legs she laughs, it is soo sweet to hear a baby giggle.
We love our little girl, she makes our home a happier, better place!

Look at her cute little fuzzy hair, isn't that adorable!!!


This is a preview of her costume, she is FIFI! More halloween pictures to come i promise!

Exciting news

Paul Cardall will be having a 'celebrate life' concert on Feb 15, 2010 at Abravanal Hall in Salt Lake. Tickets go on sale Nov 2. We can't wait!!! Check out the short video on our sidebar for more info.

Sleeping help??

Ok so lil miss Libbi has decided to wake up all hours of the night! She started sleeping through the night at about 3 weeks and did great up until surgery. Since then she has started waking up a little bit at night and now the last few nights have been horrible! She is up seriously ALL night! Kurt is such a trooper and gets up with her most the time but it still wakes me up so neither of us are sleeping. Any ideas?? With my others i would let them 'cry it out' but with Libbi i just can't do it, she sounds like she is hyperventalating when she cries too hard. I've been putting rice cereal in her bottle for a while now so that's not helping.. She may be teething, but i'm not seeing any signs other than the not sleeping... any other suggestions??

Post surgery checkup

We went to Libbi's post surgery checkup today and everything went great! We got to get rid of the oxygen, which was nice, it was getting bothersome to both her and me!They said her chest xray showed her heart was much smaller than it was when we left, meaning her surgery worked! Her heart was enlarged because it was overworking itself and now, just 3 weeks later, it has showed much improvement. YAY!! Good job Libbi girl!! Be sure to check out the gratitude challenge i am doing, i will post on my family blog everyday. Go to the widget on the sidebar to join me!!

More smiles

We were having a little break from oxygen, i had to change her stickers and ripped her poor little cheek to shreds. She was so sad, so Jerzi helped calm her down, she loves her big sissy!

"o thank you sissy, you're the greatest :)"

This is her favorite thing to play in!

Notice the date on these pictures, 4 days after surgery!!! Wow! She's a trooper.

Before and After

I wanted to get some pictures of Libbi before her surgery and her new scar. This was the night before surgery.
...and this is after!
I have to say, she seems much happier AFTER surgery than before don't you think??
Love this girl, she's all smiles lately!! Sooo happy!!

The little feet you see in every picture would be her 4 year old mom. NO WAY she's bathing without her right there watching!

Another contact for Home

I added another email for the Have a Heart Home, if you are not comfortable emailing me, you can email jed@nilsonhomes.com. He is in charge of the project, and again, no one will know that you have emailed him, except him. If you know anyone deserving of this please don't be shy. Nominate them, or yourselves. Everyone with special needs is deserving of this.

Have a heart home

The company my husband works for, Nilson Homes, is doing another 'Have a Heart Home' for a family in need. They build a home for a family with special needs at a very low cost, with the help of sub-contractors and other builders. They are taking applications and then will choose one lucky family. I can't think of a better applicant for the 'Have a Heart Home' than a 'Heart family' If you, or anyone you know is interested in building a home at a lower cost in Weber or Davis county, leave me your information and i will submit it. I love all our heart friends that we have met, and i know there are many we have not met. This is a great oppurtunity so don't be shy, if you are interested, you are very deserving so please email me at mindidixon@msn.com and if i don't know you and your family's story, leave me a brief history. No one will know you have emailed me, except me. You can also email jed@nilsonhomes.com if you'd rather not involve me, either way is great! Remember, the house will only be built in Weber or Davis County BUT it can be ANY family with special needs not just heart problems. Although the majority of you that read this blog are heart families, if you know anyone with any other special needs they are deserving as well. For more information on the 'Have a Heart Home' click on these links http://nilsonhomes.com/charity.php
http://www.northernwasatchrealtors.com/committees/community_service.html

I'm Home!!!

I am home!! I am all settled in my own bed. It feels so nice :) I am on oxygen and a few medications but other than that i am a free girlie! I go back in 2 weeks to see the doctors and hopefully get rid of the oxygen. My mom met Paul Cardall and his wife, Lynette, in the hallway today, i wish i could've met them, my mom said they were very nice. Thanks to everyone who have been keeping up with my progress, your prayers worked! I think i made a record, only 40 hours after getting out of surgery, i am home! I am happy and so is my family. My mom will post pictures in the next couple days of all my happenings but for now we are resting and enjoying HOME!!
Love,
Libbi

Fashion show!!

I had a request for some 'good' pictures of Libbi! I didn't realize i posted all the yucky ones and never posted the ones since she has started to look so good! These are all her many outfits! My sister in laws made her 4 of her own hospital gowns, they were the talk of the town with the nurses! She had a few accidents, spitting up on them, so she is wearing her blue today. It's not too bad, i kind of like the pants :)

Moving to the floor. We put a bow on her for the move but she has massive headaches because of the new blood flow in her head so we took the bow off.

This was her before going into surgery. She had no clue what she was in for :(

No worries!

(You have to read the next post first, before this one, for it to make sense)

9:00 am
I went to have breakfast and thought, well if you aren't going to feed her or give her meds then you can take care of her crying!! Well Libbi really showed them! This is what i came back to...

Poor hungry Libbi

8:30 am
I'm not sure what to label this post. I am upset. They made Libbi stop eating at midnight, except for clear liquids, then nothing after 6 so she could have a sedated echo at 8 this morning. The nurse just came in and said they can't do her echo til 11!! Are you kidding me. That is sooo mean. She actually ate at 10pm and went to sleep so that will be 13 hours of nothing. And she's been awake most the night too. Then she just informs me that they are going to have to wait to give her the 8 o clock meds!! Through the night she has just been spitting up her pain meds so hasn't had any of those since 8 last night. Poor Libbi. She is actually doing ok at the moment but i feel a storm coming. It may not be Libbi that creates the storm but ME!!

Harley Bunny

The Harley riders i talked about in the previous post brought Libbi in a big stuffed bunny. Its so cute. I feel bad i didn't get a picture of them, Kurt and I were at lunch downstairs when they came. People are so nice!

Good Sunday!

12:00 pm
Today is a good day! Libbi slept all night and has been sleeping all morning. They took her chest tube out this morning and she did well. Not happy well, but no bleeding well :) I had to leave. I think the less i see her upset the better i do. The nurse that took it out and the cardio team said they will do an echo in the morning and probably send us home tomorrow afternoon!!! Are you serious?? I'm not even sure i feel good about taking her home. Just 4 days after open heart surgery? I hope they know what they are doing. I know they do it just scares me a little. She still has oxygen, and may go home with it but other than that she is a free woman!! It's good to see her with no lines and all that stuff. She looks much better without them.
We have loved all our nurses so far, which is rare. You usually will get one or two bad eggs. Last night and today they have both been men. I like the men, they are sweet.
It was good to hang out with Koy and Jerzi, i missed them. We went to church this morning, it was 30 minutes long and it was testimony meeting because it's fast Sunday due to conference next week. I can honestly say it was the most emotional i have been this entire stay. I'm pretty certain all our angel friends went to church with us today. You could hear the sacrament cups drop into the tray, and i could hear way more drops than there were people in the room. It was amazing. I said when we were done that i was moving wards, then i quickly said, nevermind i don't want to move to this ward! It was very neat though. We were going to take Libbi with us but she was sound asleep so she stayed. Koy loved not having to wear his church clothes and when it was over he said "wow, that was shorty" He was thrilled. It may be hard to get him to go to our normal ward next week. They gave each patient a blanket with a tag on it (a permanent tag, that is sewed on) that says "..and he took thier little children, one by one, and blessed them" It is neat. I love that it will have that saying on it forever.
There must be some sort of a harley ride going on cause they just pulled in outside our window and there are TONS! It's neat to watch. Another thing we can see from our window is the Ute stadium. James took Koy to the game last night, he was in heaven! He has switched teams and is now a Ute fan. Kurt is not to happy about that :)
We feel so blessed for having what we have. One guy in church today said "We all have trials, we cannot choose them, but we can choose how we meet them" I loved that, and when we got done, Kurt had remembered it as well. May we all 'meet' our trials with open arms and endure them well.

Reality

10:15 pm
I think reality is setting in, or i'm just tired. Or both. I know i have NO room to complain cause Libbi has done awesome but watching her tonight was hard. She is so miserable. She is getting morpheine every 2 hours and Loratab every 6 which tells me she is in pain :( I want to take her home and love her, squeeze her, laugh with her and watch her fall asleep in her own comfy bed. I am only on day 2 and there are so many little ones that stay MUCH longer than i can ever imagine so i am sorry for complaining, i am a brat. I'm just missing home. The kids came to have a sleepover with us at the hotel tonight and so we left grammy with Libbi and both left, we needed that. They will talk about taking her chest tube out when they round at 8am so i will keep you posted! Let's hope things keep going the way they are cause that is GOOD! ...and you all know i will be better after 8 hours of sleep :) I should not post at night when i'm tired but for my own journaling purposes i want to know all my feelings. Why can't all kids just be healthy?!?!? It's not fair that the parents who actually WANT children and LOVE them get sick kids and the ones who smoke for 9 months and do drugs always get the healthy ones. I know the reason but it still bothers me :) Night.

Miraculous

2:30 pm

We just got settled into our own room on the floor!! Out of PICU!!!! Woo HOO!!! I can't even believe it. Just 24 hours later?? I'm almost in shock, i am so amazed! They took out her lines in her neck and arm plus the one earlier. Sorry, i have no clue what they are all called. She has now 1 chest tube, oxygen, and her IV for medication. They are thinking they can take the chest tube out in the morning. We will see... but as for now we are happy campers! I'm not wanting to jinx anything but i'm going with number 5! That is our lucky number, 5 days when she was born so why not 5 days again? They said they usually take out the chest tube, do an echo one day later then send you 'to a picnic' one day later. Which would be Tuesday, 5 days... again, not to jinx anything but if things keep going as they have there is no reason why not right?!?

I'm loving the big room where i can kick my feet up and relax a bit. I will be happy to watch the RS session of conference in here. Too bad BYU won't be on, they don't have the channel :( but if it were on, i would have to choose between the game and conference so i guess it's a good thing :) :) I would hate to make that choice.

Thank you all for your prayers, we know they worked and they were felt. Not that i'm trying to set a record or anything but i have still shed no tears? I kind of think 'what is wrong with me?' I just think all your prayers and support has helped me through. I have wondered all along, 'what am i supposed to be learning in all this' and I know now more than ever that i was supposed to learn patience!! The weeks leading up to this and to her birth were FAR worse than this last day. I feel like a visitor just stopping in to see my baby, i don't feel sad really, until i get tired then i miss my kids, my bed and home. But i think it's a homesick sad and not a 'Libbi just had surgery' sad. I see the others kids and think 'o how sad for them' and then i realize O i am them!! But for some reason i feel fine. The nurses keep saying she is doing miraculous. Which is a form of M-I-R-A-C-L-E!! That is Libbi!

Morning news

9:45 am

Today Libbi is miserable which makes me sad. She is doing remarkable, the nurses even keep saying 'o she just had her glen yesterday? Wow!' so that makes me happy! She is a little more alert today and looks at me like 'what the hell did they do to me mom?' Sorry for the language but that sums up her look perfectly!

She is finally asleep, she didn't sleep all night they said. She wants to rip out her oxygen and all her lines. They just came and took out her atrial line and she didn't even wake up. After we wait a bit and see how she does with that one being out they will take out some others. They are talking about moving her to the floor possibly tonight. I'm not sure how i feel about that. Of course i want a speedy recovery but that seems way to speedy! I want her to be ready so nothing happens.

I forgot to mention the best part last night... SHE HAS A NORMAL HEARTBEAT!!! YAY!! If you ever listened to it before it sounded like a washing machine, just a swoosh swoosh sound. I listened last night and it sounds like an actual beat! That was amazing to me. I can not believe they went in and fixed her tiny heart. Technology is amazing these days i tell ya.



O and on a funny note (more funny for those who know him) when Dr. Burch came in yesterday morning and said "Hi i'm Dr. Burch" Kurt went "huh!" I then proceeded to ask him his age, he is 38 but looks 25! I think he was flattered that we thought he was so young. Not at all what we were expecting!



And on another note, we stayed at the University Guest House last night and it is homecoming week for the U. We ate U shaped donuts, they had helmets, pom poms and banners ALL over the hotel and everyone there was wearing RED!! Kurt said he was going to throw up his breakfast. He wouldn't eat a U shaped donut but I did and they were yummy! For those who don't know, we are Y fans. This was a rough stay for us in more way than 1!!

Good night!

9:00 pm

We just left Libbi and are staying at a hotel within walking distance. She was eating like a champ! They had to actually try to slow her down so she doesn't get sick. She's such a good girl. She is still out of it but she did look at me tonight. She is so cute. We will check in through the night, unless we sleep all night, which is possible, and very much needed! We are way tired and for me tired = sad. Today was a great day, we are hoping for the same progress tomorrow!! GO LIBBI GO GIRL!! LIBBI LOU LOU LIBBI LOU LOU THEY CALL ME LIBBI LOU LOU!!!!!! We sing that to her all the time, my kids love it :) I miss those little kids. They are having a sleepover so they don't miss me which is good!! Until tomorrow.... O and Kurt says ZZZZZZZZZZZZZZZZ! He's out. It's 9:02 and he's out. I'm not far behind him though.

In her room

2:30 pm
Libster is all situated in her little picu room. She is doing very well. She is still asleep, she kind of wakes up for a sec then goes back to sleep. We are very optimistic, she is doing just awesome :) They will be taking her breathing tube out within the hour.

This is all our crap in the waiting room. Jana requested a picture. No really, this is just OUR stuff!! Ha ha! O and yes that would be Kurt sleeping on the floor :)

This is her cutest hospital gown made by her aunts Montay and Ann. SOOO cute! Kurt thinks she looks like she's going to the prom in the 80's with the big sleeves. All she needs now is some BIG bangs! Me and Lib LOVED the gown, and besides, boys don't know anything about style :)

Update #3

11:45 am
They came again and said he is cruising right along with the surgery! She is off bypass and he is done with the procedure. She still has about an hour left with just getting lines in order and odds and ends then Dr. Burch will come talk with us. They said after he comes out to talk to us it'll be another 45 minutes or so until we can see her in PICU, about 2:00. B-R-E-A-T-H-E!! It's not totally over but the worst part is, well for her, the worst part for us will be at about 2:00 i'm afraid... So far there has been no tears shed, i'm pretty impressed with myself but also worried that they are piling up getting ready to flow all at once. We will see :)

Update #2

11:00 am
They are pretty accurate with their timing updates, she just came in and everything is well. She is now on the heart bypass machine and they are starting the acutal Glenn procedure. She said they will be back at noon so we will be back at noon!!! It was a pretty short, uneventful update but that's what we like :)

Update #1

10:20 am
They called about an hour ago and said she was opened up and they were 'officially' starting.
Dr. Menon just stopped by and said her TEE (Transesophangeal Echocardiogram) was in and good. That is another sort of line they put down her throat to do an echo, because she is opened up, they can't do a regular echo so they do this. It is placed behind her breathing tube. Just to warn you all (grandparents) she will have quite a lot of things hooked up to her when we get to see her. I know that i am not prepared, it will be rough. They said we would get another update about 11:00. We have moved into the waiting room, we keep getting weird looks cause we have so much stuff! We needed things to stay busy, plus pillows, blankets, laptop, camera bag and Libbi's car seat! Ha ha we do look kind of funny. O well!

Sent off

8:15 am
We just sent Libbi with Dr. Clark, the anesthi**** (i'm so not in the mood to think about how to spell that) he was very nice. She was super hungry and tired :( They will come and give us our first update after they have made the incision, at about 9:45. We will keep posting.

7:30 am

We went to do pre-op labs today and we are on for 7:30 am. The surgery is about 5 hours, with updates every hour or so. I will do my best to keep the blog updated. Wish us luck :)

On schedule

Dr. Rose gave the thumbs up today. He said Libbi is one healthy little girl!! He also said 'she's a tough little one, she will do great!' That is good to hear. He said her respitory rate was way down and she didn't sound wheezy at all. He mentioned he was worried she had rsv so he was relieved she was better. I'm really glad he didn't mention that last week, i would've been wiggin out! I'm glad all is well and Dr. Menon said we will go ahead with surgery as planned, which is Friday! This Christmas project is keeping my mind pretty busy so i'm ok today. I think with what happened last time i won't freak out until Thursday night, you never know what might happen until then!

Halfway to 1!!

Libbi is 6 months old today!! We had a little celebration this morning, the kids went around the house and gathered things for her gifts. Jerzi had a whole bag full of things, it was cute! I can't believe 6 months already?? Time sure has flown, way to fast! It seems like yesterday she was just teenie tiny laying in my arms staring at nothing. Now she notices everything around her. The best is when you are eating, she looks at you like you are SOO mean cause you won't share! I think i've even noticed drool a time or 2 :) She is still just eating formula other than before bed i throw some rice cereal in her bottle to keep her fuller longer. The dr says she doesn't need anything but formula yet and she is growing good and sleeping good so i'm not messing with things! She rolls and scoots all over the place. She loves to watch her big brother and sister. She laughs at them all day long! She has many nicknames, Libbi lou lou, Libster, Libarama, Lib, Little one, SuperLibbi, Strawberry, Libbi Girl. Kurt and i love to get her out of bed in the morning cause she goes crazy! Her little arms just flap like she's about to fly away, it my favorite! The kids just adore her and love to get her out of her crib. Jerzi likes to 'tend' her but the other day when she was in charge while i walked Koy to the bus, in 5 minutes, she made her a bottle (scary) and told me that Libbi fell off the couch! I'm sure glad she's a tough cookie! Needless to say, Jerzi won't be 'tending' again for a while :) I'm so happy to have Libster in our lives and we love to watch her grow!





This is a picture of all her gifts this morning. A few stuffed animals, a blankie, a card that is Koy's reading homework, a pair of pants that fit Jerzi and some underwear! I guess now that she is halfway to 1 she doesn't need diapers anymore? Ha ha i love their little imaginations! We will be having cake sometime today cause what's a birthday without cake?!?! HAPPY 6 MONTHS LIBBI LOU!!!

What if??

I have been thinking alot lately about Libbi and her condition. I am learning alot, i think, about the heart and it's function. Libbi has had a cough for 3+ weeks now and i am starting to think what if it's not just a 'cough' but what if it's related to her heart? She has had no runny nose, no fever, no sneezing, nothing but a cough. I took her in on Monday to have her O2 sats checked and they were 81, then 85 so somewhere in there i suppose. While we were there Dr. Rose (this is her pediatrician) listened to her and said she was a bit wheezy so he ordered an xray. After having the xray he called, as well as Dr. Menon (cardiologist) and they decided to put her on a nebulizer 3x a day until Monday, so 7 days. We are on day 5 and she is still coughing. She only coughs when she is crying or when she just wakes up. Hmm. Any thoughts?? They mentioned that if her cough isn't gone by Monday when i take her back, they may postone surgery again. But what if the cough is because she needs surgery?? I'm sure the team down at PCMC will do the right thing but it just got me wondering.. Either way lets hope for the best, which in this case is no more postponing!! ...or no surgery at all :) Hey i thought i'd throw it out there. I am posting a picture of her getting her xray but be warned you may not want to look. I PROMISE it looks alot worse than it really was. I need this picture for journaling and this is my journal so sorry Kurt, mom and Sunnee. But i did warn you to not look again!! She didn't even cry that hard. I was actually laughing cause i thought it was so odd. What is the deal with this thing anyway? Why can't they just lay on a table? Sometimes i wonder about the "NEW" stuff they come up with.


O and she does have legs even though it looks like she doesn't in this weird contraption.

"LIBBI" WOD

Kurt, Chase and I have been doing Cross Fit at the Ogden Athletic Club since June. Jana has been doing it as well at home. You go everyday, or 3 days a week for me, and do a different WOD. WOD means 'workout of the day' and they are timed workouts. Well alot of the wods have names like Fran, Helen, Grace etc. We go online every night to see what the WOD is for the next day and this was it the other night.

WOD
9-9-09
"LIBBI"
This WOD is dedicated to Kurtis and Mindi Dixon, their new born baby Libbi, has to have heart surgery tomorrow, everyone please keep Kurtis and Mindi in your thoughts and prayers and do this one for "Libbi"!
12 Rounds for time of:
7 Squat Cleans- 95/65
7 Push-ups

We were so thankful for this workout group to be so supportive of us. There were so many asking about Libbi and how she is. It was very sweet. If you haven't heard of Cross Fit, or haven't tried it you totally should!! Kurt's quote would be
"The smartest and hardest workout i've ever done" Ha ha, he really had to make up a quote about it and that was it!! We did a 6 week challenge with the group and we are waiting to hear the winners. There were only 10 of us that made it to the end and I really think Kurt should win! I'll keep you posted!!
Mostly i needed this for journaling purposes but hey it's a good solicitation as well! Also, when Libbi really does have surgery (one day) You all are doing the workout "Libbi" for her!!

Christmas project!!!

With the help and encouragement of some friends and family, we have decided to take the plunge and just do it!!
We are doing a Christmas project for Primary Childrens Medical Center PICU. Click on "Libbi's Christmas Gift" on the sidebar for more information!!

Heart walk

The Intermountain Healing Hearts organization puts on a walk every year to spread awareness of CHD (which is congenital heart disease, we had a few that learned that today!)I was really wanting to go but thought with surgery we wouldn't make it so i had asked my family if they would try and go. Well turns out, i got to go! I'm so glad we did it, it was very tender. They did the walk, it was 1 mile, then they had a group picture, an angel ceremony where they let butterflies go for each fallen heart hero and then a drawing for prizes. The best was the butterflies. The families of the angels went up and said their childs name then let the butterflies go. One flew right over us and Libbi, i think it was an angel saying hi to her and wishing her luck :) Thanks to everyone who made it, i know it's hard, especially on Saturdays, to take time out of your schedules but it meant alot to me. Kurt and Koy didn't make it, they had soccer :( I wish they could've been there, it was neat. But for those of us that could go, it was worth the time.

Uncle Scott had an idea to take our picture in the shape of a heart. Cute!!


This was just part of the group!! Wow, lots of people!!

Just hangin out in the shade..

Aunt Linda, my mom, me and Aunt Julie all pushing Libbi!!

Some of us walkers..

Jerzi had to hitch a ride on Brock's shoulders.. She was "super tired" after 1/4 a mile!

Some more walkers.. we had a hard time staying together, you should have seen me running all over trying to get everyones pictures!! It was craziness!!

Starting with me and Libbi at the top, clockwise.. Libbi and me, Aunt Netso, Grammy Deana (my mom), Jana and Anna, Brock, Whitnie, Aubree, Jerzi at the point of the heart, Skylee, Allie, Aunt Linda, Tonnie, Uncle Scott, Aunt Julie. Sky's "friend" Chris was also there but he had to get to his football game so he missed this pic. He plays for Weber State :) :) hee hee..

We all wore our Libbi shirts. Our cute friend made us shirts to wear the day Lib has surgery, they say "mend my broken heart" with "Libbi" in the middle. I forgot to take a close up of Libbi wearing hers, i will do that soon! Some of them are a bit different saying "saving little hearts" with "Libbi" in the middle, but they are all so cute!! I will take close ups and get them on here for you to see. Silly me :/
What an awesome day!! Thank you to all those that put this on, can't wait til next year!!