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!!

Feeling better

I apologize to those who had to read my last post, it was not very nice. I deleted it from the blog but saved it so that i can have it, even though i may have been wrong, i felt it and i want to remember what i felt. I am feeling much better tonight. I have realized that maybe someone received a new heart today that has been waiting a long, long time, and that is part of the reason Libbi got moved. This person has been an inspiration to me and my family for sometime now and we are so happy for them! I am not certain of this but i'm pretty sure I know who it is. We couldn't be happier and we can wait 2 more weeks if others can wait years. I miserably failed my test. I hope to do better on the next one. Thank you everyone for being there for us during this difficult time, although others are going through much worse.

For those who missed the last post, surgery has been moved to Sept 25, 2 weeks from tomorrow.

Sweet baby girl

I wanted a few before pics of Libbi's chest so i called my cutest neighbor to come take a few, it was so last minute i really appreciated her doing it!! They are seriously the cutest pictures, i told her she needs to go into business and use Libbi as advertisment cause she is so darn cute!! Thanks M!!
(be sure to read the next post about surgery being POSTPONED! Yup you heard me.)

These are just a few of the many cute ones but i need more time to narrow it down to my favorites!

Postponed

Got a call tonight that surgery has been postponed until ?????? There was an emergency transplant they had to do tonight and then some new babies born that need surgery within 5 days. We will know in the morning when it will be. If we want Dr. Birch, the surgeon we have chosen, the soonest is Sept 30, but if we choose to go with Dr. Kaza, it could be next week. Stay tuned........ and AAAAAAHHHHHHHHH!!!!!!!!!!!!!!

BYU! BYU!

Libbi's first Cougar game was today and she is our good luck charm!! We beat #3 Oklahoma 14-13! BIG upset, but as Kurt keeps saying "We knew we would win, no big deal" Ya, he's full of it! Is she not the cutest fan EVER!?!

Faith

I saw this picture and lost it. I have been holding up really well, at least i think i have, but the last couple of days have been rough. I'm not sure if it's all the questions, the phone calls, or just the reality of what is happening. I have been living in denial. I like it better there. I just barely realized earlier this week that Libbi is having 'open heart surgery' and that they will stop her heart and put in on a bypass machine. I don't know why but i did not know that, again the denial. This picture is comforting to me, although it made me cry. I've said it before but i really think that Libbi knew 6 months ago, before she came to this earth, what she was in for. I have to think that to make it better. I have to have faith. We are doing a fast for her this Sunday and would appreciate any and all of you to join in. That may be lame to post on a blog but i don't care. The more the better. I helped Jolene with her ladies last week and quite a few of them said they would put Libbi's name in the Temple. I just kept saying 'ok thank you.' I wasn't about to say her name is already in the Temple. We will take as many prayers as we can get. We need them. Libbi needs them.

A-T-T-I-T-U-D-E

I was cleaning up and Libbi was in her room having a bottle, when it's time for a nap i have to just lay her in her bed, she is not a snuggler and just gets mad if i try to hold her when she's tired. Anyway, i heard her screaming, and not crying screaming but like yelling! I went in and she was holding her EMPTY bottle up just yelling at it!! Obviously she was mad at the bottle for not producing more food! I couldn't stop laughing! She's got her moms and sisters attitude all ready!!