Teagan DASH, our little INCREDIBLE

2011... Where did the Time Go?

2011-01-13T18:08:00.000-07:00

Wow, it has been a whole year since I posted! I've had good intentions, just never got around to it. I want to apologize to all of you who were kind enough to keep coming back, checking for a post. But today is a new day, a new year and time for a new post!
Since this is Teagan's heart blog I but I do have a big announcement for the heart world and all of our supporters, for those of you who haven't heard...I am the new President of Intermountain Healing Hearts. IHH is a support group for people and families with CHD's. It is a wonderful organization and I'm excited to be apart of it! I hope to add to what has already been created, I have a terrific board beside me and I am looking forward to the future of IHH. I want to reach out to all those who are looking for hope, hope is sometimes hard to fine when the truth sets in. But hope can be found in these little faces!
Teagan is doing well (besides this cold he is fighting right now). He still has his feeding tube, but he eats quite a bit by mouth. He loves chicken nuggets, fries, popcorn, chips, apples, goldfish, salad, carrots, noodles, mostly salty things. It's the liquids that we struggle with, it's either Diet Coke or Water, I wish he would drink something dairy. He is aware of hunger though, he tells me, "Mom it's time to feed me...in my tubee!" He realizes that people around him don't have "tubee's" and I think that makes him want to eat more by mouth.
He is so much fun! He is way smarter than I ever expected, he counts to 13, he knows some letters and sounds that they make. (It helps that big brother is in kindergarten and is learning all these things too.) I just expected him to be behind in these things with the lack of oxygen and his early delays. But the only thing he is behind in is running and keeping up with other kids, the stair make him pretty blue and we have a lot of stairs. He recovers quickly though. He is quite the singer, Woody's Round-Up is his most requested song, he also does All the Single Ladies, Tonight's the Night, and Be Our Guest. He is very talkative and I have become a great translator! He is a wonderful asset to our family. It is so fun to see my two boys playing, rough-housing, and getting into trouble together! Teagan knows what he wants and he has most of us twisted around his little blue fingers! We have a echo scheduled in March (fingers crossed, we can do it un-sedated). The echo will tell us how Teagan is doing on the inside and when his next surgery might be or if we can put it off another year. We had a wonderful 2010 and we feel very blessed that we stayed out of the hospital all year and stayed away from any major sicknesses. Here is a ~~few~~ lot of what you missed from our past year:

Mason's B-Day party

Valentine's Day

Teagan's b-day party

St. Patrick's Day (2 years since Norwood)

Zoo

Helping Mom in her salon

Blaze game

Doing Kimmie's hair

Heart Mom Lunch

Watching his favorite show

Falling asleep in Mom's car while watching his shows

First major haircut

Seeing Iorn Man 2

Mother's Day Brunch at the Little America

Trip to Kimmie's in Arizona, Great Grandpa Mason drove Mom and the boys all the way and the others met us there by flight.

Got to meet Owen, a fellow HLHS brother

Thanks Uncle Mike for the new puppy

Taking a ride

Playing on the playground

Boating on our new boat

"But I don't want to wear this stupid life jacket"

Don't you think we could be brothers

Finally getting to see "My Guys" on opening day!

Swimming at Grandma Becky's pool

Rodeo Time

Celebrating Big Mace and Big G's 50th Wedding anniversary camping at Willard Bay and Lagoon, so we could stay close to home for T.

Practicing my surfing skills

What a precious face

"Hands on a Miracle" Real Game 24th of July

Cortney and Trevor's Wedding Day

Porter's Baby Blessing

Mommy's Birthday

Working on the ipad

At the end of July we got the devastating news that Big G had Pancreatic Cancer and didn't have much time left. We made good use of her remaining days, she made a bucket list and we crossed everything off before we lost her in November.

Bear Lake '10

Play Time

Went to see the army men at Airport 2

Mason start Kindergarten, walking him to the bus stop

IHH Heart Walk '10

Playing train's with Brother

Cardiology Appt., My Guys needed an EKG too!

Surging with my best buddy B

Bucket List- Take Teagan to the State Fair

"UTE'S BABY!"

Grandma Dee's b-day

Last boating trip of the year

I am Iorn Man

Pettit Picture in the Pettit Pumpkin Patch '10

Bucket List- Meet all the girls and Mason & Teagan in St. George for the Huntsmen Senior Games to see Big Mace play Baseball

Sip'n Slurpee's

IHH Halloween/Birthday Party

Ward Halloween Party

Monkeys on my neck

Line them up, nice and straight

Mega Mind 3-D

Licking Spamoni

Big G's funeral

Happy Thanksgiving

Me & my dog Roxy

Festival of Tree's, time to see Santa

I'm in a bubble!

Handsome Boy, where are your pants?

Grandpa Shreck's b-day

Grandpa Bart & Grandma Dee took us all on a train to the North Pole and to stay there over night (Heber)

They gave us pillow pets and new pj's

We went to church there too

Mckenzie's Rock'n wedding

Christmas Eve Breakfast

Christmas Eve Night

Cousin PJ Picture

Christmas Morning

Christmas Night

Christmas with the Rowley's, it was really specia,l Big G had done all her shopping early so we all opened gifts from her, it made it feel like she was there.

Kori gave me Chuck the talking dump truck, just what I wanted!

I gave Brookie Cookie just what she wanted

Mason got a Paper Jammers, but I think it is mine

New Year's Eve Breakfast at Vi

("Hi Sherri")

New Year's Eve at Classic Skating, just as getto as it has even been

Happy New Year

Merry Go Round for being good while we did returns at the mall

New Year's Day Ping Pong Tournement

T has a mean serve

Birthday Sunday with the Pettit's

We are Still Here

2010-02-18T14:54:00.000-07:00

I know we are way behind, but I just wanted to post a quick update to let everyone who still follows this blog that Teagan is doing great! We recently had a check-up with Dr. Day at the new Riverton office, can I just say what a joy and a pleasure that was, the new hospital is so clean and we were like the only ones there so we got fast service. I knew this appointment was coming up so I have been working with Teagan, trying to get him ready for the x-ray, pluse ox, blood pressure, ect. At home he was starting to relax and actually look forward to have his heart checked. We took turns wearing the pulse ox, we tryed it on his favorite toys and brother too, just to show him it doesn't hurt and it's not scarey. We even asked our family to fast with us the Sunday before the appointment and send a few extra prayers, not that his heart would be perfect, the hope was that he could relax so the staff could get good, accuret readings, so we could have something solid to go off of. It seems like everytime we have a check- up he is so upset that Dr. Day has to go off of what I say or guess if it's a good reading or not. With him getting older and Ryan and I were planing on leaving the country for a week I wanted something solid to go off of.....Well as we all know with these kiddos it's just too much to ask because from the moment we entered x-ray it was non-stop tears, despite the practice, new toys, bring brother for support, all my efforts went down the tubes fast! The x-ray showed that his heart seemed slighgtly large, but Dr. Day accredited that to he must of been holding his breath because he was screaming and the way his lungs and diaphram looked. Then we couldn't get a blood pressure or oxygen saturation even after we asked the nurse to leave the room while I tried, the best we got was 79-80, but at home I was getting 80-85. And to add to our afternoon circus it was time for some blood draws! Luckily I talked them into letting us do it last, after the doctor exam. We got enough blood with just one poke. Dr. Day was wonderful as usually and we are happy to say that we don't have to go back until the end of summer, he would like to put off the Fontan (Teagan's next OHS) for atleast another year, maybe more. We adjusted his meds: Digioxin 1/day, 1.5ml; asprin 1/day, 1/4; Enalapril 2/day, 1.5ml; Septra same. We wanted to make sure Dr. Day thought it was safe for us to leave him for 9 nights with my mom while we went on a cruise and he said, "If I say no can I go in your place?" All joking aside he said he should be fine and that my mom could call him if she had any concerns. He knew we were ancious for the blood test results and said he would call me that evening with the results. He did call during bath time so missed it, but he left a message that said he didn't have the results yet and would call me the next day. Well I missed that call too, but the message said everything looked fine, his hamadicrit was 44.9, which is fine. he told us to enjoy our trip and he would like to see us at the end of summer as long as we felt Teagan was doing ok. He is so personable and I always leave feeling comfortable and like we got all our questions answered clearly!

Teagan is walking, eatting, and saying more words everyday! He is big into Toy Story and whatever brother is doing! We feel so blessed to have him as a part of our family, I am greatful to be the mother of two beautiful boys who adore eachother and the wife of a wonderful husbend who povides so well for our family, he is my rock! GO TEAM PETTIT!

I hope this post finds you all well, especially all our little sweet-HEARTS, I wish we could keep in better touch with all of you! As this new year begins, we look forward to making new memories and creating more family traditions!

Happy Birthday Intermountain Healing Hearts

2009-10-23T10:36:00.002-06:00

IHH, the heart support group we belong to, celebrated their 2nd birthday at The Red Barn. We got to go on a wagon ride and pick out a pumpkin, then we went back to the barn for sider, doughnuts and info. It was a really fun time to see some heart friends and have a fun fall activity!

Teagan & his Becca

2009-10-23T10:13:00.000-06:00

This is Teagan and his Early Interventionest Becca! We love her, she does a great job with Teagan and never pushes him too hard. She has been a blessing in our lives, I fear we won't be needing her much longer just like all of our other wonderful therapists, but I wanted to grab a picture before I forgot and she was gone.

My Special Birthday Gift

2009-10-23T10:07:00.000-06:00

For my birthday this past August, my sister-in-law Jodi gave me Teagan's blog in a book! It was so thoughtful of her and she put so much work into it, not to mention the money. It is his whole first year from when we started the blog to his first birthday party, she even cut and pasted all the comments from you guys! It is a priceless gift to me, even though it cost a lot to make, thanks Jodi!

18 Months Old

2009-09-28T18:54:00.005-06:00

At 18 months old Teagan is a whole new guy, you won't believe me if I tell you, but I will tell you anyway...HE EATS! It has been an absolute miracle! Teagan has finally started to eat and swallow and eat some more all day every day, it's nothing too healthy or wholesome, but it's food and it is going and staying in! He hasn't had a puke or gag since our rough patch back in July, it has been absolutely wonderful and do you want to know what made all the difference....WALKING! His core is finally strong enough to hold every thing UP and DOWN (if you know what I mean). He loves to crawl up the stairs and scoot down the stairs. He walks from Mommy to Daddy and loves to see how long he can stand in place or just fall straight back thinking someone will catch him. He has had a few spills and has the bruises to prove it. His new found independence makes it very hard to keep him away from all the germs, but I just try my best to keep things clean around him and wash his hands as much as I do mine. Mason started preschool and with that comes a whole new set of germs, I think I remind Mason to wash and sanitize his hands so much I forget to tell him to have fun too. We have truly tried to jam pack our summer full of fun as we don't know what next summer will bring, so here is what we've been packing it with:

This is the Ryno, to say Teagan loves it is an understatement, he goes absolutely nuts waiting for daddy to get home so he can go for a ride. He even has his own sign for it and then taps his head signing HELMET, it's even special enough to say, "VROOM, VROOM!" We just had a back seat put in and harnesses for everyone, including the car seat. We just got back from Moab with it, did I mention how much Teagan loves it?

These are T's favorite PJ'S, he points at Elmo and then shrugs his shoulders because he doesn't understand why Elmo is allover him!
Teagan helps me drive Mason and his friend Garett to preschool!

Teagan loves ice cream...don't even try to take it away, not even when my chin turns red from the cold, no sir!

The IHH Heart Walk

2009-09-28T16:27:00.010-06:00

We got to participate in the IHH Heart Walk this year! It was fun to gather our extended family and walk for HEART! We had about 20 family members there to represent Teagan DASH. We all wore our special Incredibles shirts. We want to thank everyone who took time from their busy Saturday to support us and our group. Some family couldn't be there, but still wore their shirt or donated money, my Mom even made heart shaped Rice Krispy treats to have a little piece of her heart there, we appreciate it all. Just the four of us stayed for the angel ceremony, it was very beautiful and touching, a group I pray I never have to join, but in the back of my mind realize I might. They released butterflies up to their angels and Mason asked if they were going up to Heavenly Father, so precious. It was a beautiful morning and I'm glad we were there.

Some of us met for breakfast, at Uncle Carl's (family joke)

Our INCREDIBLE league of Supers

Notice Mason's shoes, they are Vans with hearts with wings on them, so cute!
T, Me, Amy, & Jack

Gathering the troups

And their off...

Teagan is going to do some walking himself!

A few of the Heart Hero's with their #1 fans, MOM!

CHEERS...to HEART HERO'S

Exhausted on the drive home!

Celebrating Daxton's 1 year since Heart Transplant

2009-09-28T16:00:00.005-06:00

On September 10th we got to celebrate Paul receiving a new heart, after waiting for over a year. We also got to celebrate Daxton's one since getting his new heart! Cook's put on a really fun carnival to celebrate! It was so fun to get to see some of the people we spent last summer with inside PCMC, out of PCMC in such a fun SANITIZED environment! They had such yummy treats: cotton candy, snow cones, and fun things to do: balloon animals, and face painting! Daxton looks great, doesn't he:

Ryan & Ryan with the two HEART HERO'SThese are two of the ladies I spent last summer with
(a few were missing, but not forgotten, I think about you often)

Mason got his face painted...guess what it is? A green dragon, duh!

Thanks Cooks for including us in such a fun event!

Heart Camp

2009-09-28T15:39:00.002-06:00

We went to the first IHH heat camp, we had a really good time. It was pretty wet and rainy, but we stuck it out and we're glad we did. We loved the outdoor movie, especially all the yummy treats! We spent the night in our tent, just the four of us, it was great! Mason and Ryan witnessed the one major accident at camp, a little boy feel off a swing and hit his head and there was quite a bit of blood to a 4 year old. He was fine and our wonderful camp doc took good care of him, but Mason was quite concerned, he asked us if he could pray for him in our family prayer, it was so sweet. I'm so thankful for his tender heart, being the big brother to a heart kid is a big job, the siblings are exposed to it all. On that note I was really grateful for the activities they had planed for all the kids! Mason had a blast and loved all the prizes! While Mason was off doing that Ryan, I and T got to hear about the future of the cath lab and other interesting heart stuff from Dr. Gray and two other research docs, it was all very interesting...I got a little teary eyed a few times. Over all I think it was a big success and something we all need to donate to so they can keep it going!
So I know you want to see all the cute pictures I took...well that's a long story, but the short version is, Ryan and I went on a little get-away for our 7th anniversary and my camera got stolen with the pictures from heart camp and some other irreplaceable occasions.:( So no pictures, I've learned my lesson though: download after every event!

A Dream Come True...

2009-09-28T14:05:00.007-06:00

Last summer as we went through two surgeries and everything that came with it, Tami (Thather's mom) kept promising me, next summer we will be relaxing on the beach at Bear Lake with our little HEART HERO'S and the rest of our boys. I had a hard time believing her and knew she was just trying to make me feel better as we looked at my very sick baby. They will eat sand, she promised. Ya right, I thought to myself, Teagan doesn't even eat food!
Well sure enough Nelson's invited us to their family cabin at Bear Lake and we accepted. Over my Birthday weekend we joined Nelson's at Bear Lake. It was a dream come true, I never thought we could have so much fun! I had never been to Bear Lake and as I sat there catching some rays, I looked around and thought to myself, life doesn't get much better than this...sun, sand, water, family, close friends, it was wonderful! Teagan really started to eat while we were there also, watching Thatcher eat everything in sight was a real inspiration to him, I guess, because he wanted to try it all to! Tami would like to take credit for his eating, but I have been working with him for his whole life and it finally clicked, we'll let her think what she wants! ;)
Tami came to me at a very hard time in my life, as well as hers, our baby boys were undergoing open heart surgery at the exact same time, literally, we met in the waiting room because Bonnie was bringing us both reports from the OR. Tami was an answer to my Moms, as well as my prayers. We are best friends now, it is so nice to have someone who knows exactly how you feel without saying a word. Thanks so much Nelson's for making my Birthday the best one ever, love you guys!

Teagan loved the sand, he was full of it every night! And YES he ate it,
the proof was in the tube!

I debated on weather to post this pic or not,
but take it for what it is: a family pic at the beach!

EATING... watching Thatcher eat and trying to do it like him!

We always buy our boys the same clothes,
totally on accident...here's just one example!
The big brothers had a blast too...I hardly saw them,
they were always off on some adventure, Pirates or something!
Everyday Teagan would take his little snooze right on the beach...so sweet!

Can't wait to go back and make even more wonderful memories...hint,hint!:)

Teagan's & Mason's Professionl Picture Shoot

2009-09-17T17:16:00.015-06:00

Back in July I had the boys pictures taken professional, by Katheryn Michaels Photography. It was one of the prizes Teagan won from the baby contest!She was really understanding of our circumstances and had sanitized the studio for us. She even remembered Teagan from the contest because of how he stood out! We got to add Mason because the first time we tried there was a power surge and she lost all of Teagan's first shoot, long story short she was really sorry and to make up for it said big brother could come and added a few more free pictures. She did an awesome job, I love them all!

This first one is exactly what a I was dreaming of

(sorry it's a picture of a picture because it is too big to scan)

IT'S THAT TIME OF YEAR...AGAIN

2009-09-17T14:23:00.002-06:00

Flu season is fast approaching and you need a flu shot! I use to really enjoy the changing seasons, fall met cozy evenings, football, sweaters, jackets, and jeans; but now it is a warning that cold and flu season are just around the corner. Once again we will be requiring everyone who comes to our home after November 1st to of had a flu shot for at least two weeks (Oct. 17th). You might notice my new "Shot for Teagan" list on the right has already started. Experts are predicting a pretty bad flu season, especially with the new H1N1 (Swine Flu)strain. We will not be requiring the H1N1 vaccine, as we have heard it will be hard to get and I'm not so sure how much good it will do being the first year and all. I'm a little skeptical myself and as of right now don't think my family will be getting them. If there is one thing I've learned through all this it is: TRUST YOUR GUT! And right now my gut is saying to hold off. The regular old flu shots are out and available so go get one today! I know where to get them for $15, so just ask. Let me know when you get yours so I can add you to the list, thanks for your help in keeping our family well!

One Year Ago ...

2009-07-22T20:23:00.007-06:00

July 22, 2008
July 22, 2009
We have made it, one year ago today I handed my four month old, very sick baby over to a staff of amazing doctors for his Glenn. I can not believe it has been a year, I am so grateful to be where we are today. The Glenn was interesting to me, Teagan definitely needed it to save his failing life, but I needed it too. Why you ask? Well Teagan's Glenn stay was much longer than most, there was just enough going on to keep him in the PICU. I don't know if your following me, but at that point I didn't know how much more I could handle, on all fronts. I got really comfortable at the hospital, maybe too comfortable, but I made life long friends with people who knew exactly what I was going through. I know with all my HEART that my Heavenly Father was blessing me with a break and a renewal of mind and spirit. I saw many miracles in my two month journey, things that have forever change my life. I am so grateful to all of the staff at PCMC for taking such great care of Teagan so he could be here today. I am so thankful for all of my heart friends, especially the ones we made at that time, you know who you are :).
Teagan is doing well. We dealt with some really bad reflux during June and over the July 4th weekend, but Dr. Harris got us right into GI and we were able to get things back to where we were. I think he had a tummy bug or something and we also experienced some formula and volume changes that didn't help. We got it all figured out now, we started Teagan on Pedisure/Nutren so he could eat less which is going well. We added 2oz. of water to every feed also, I think he was getting a little dehydrated especial with the hot weather. Otherwise nothing big going on. He is close to walking on his own and climbing stairs. He started saying MAMA, he has a few signs, the cutest is how he reminds everyone to wash their hands by rubbing his hands together when ever someone enters the room, I love it, it saves me a lot of trouble. He reminds us when it time for family prayer by folding his arms. He loves to help me style his hair by rubbing his head with his fingers just like I just got done doing as soon as I have his curls in just the right place. He stats 87 awake and 80-84 asleep. He looks great. He loves Elmo and loves to do raspberries with his lips just like Elmo in Grouchland. He still scoots everywhere. He is happy and even demands to taste, smell, touch what we are eatting, but still no swallowing. Teagan has been on a few family trips and has now been to his first rodeo, first parade, first boating trip,ect. Mostly we are just enjoying a normal summer and we hope you are too!

Teagan is 15 months and Thriving

2009-06-10T16:42:00.006-06:00

First off I need to send out a big THANK YOU to all of those who took time to vote for Teagan...HE WON! We won't know about Disneyland until January, but we did win a photo sitting and picture, and a savings account!
Well in other news, sorry for the lack of posts...we have been enjoying summer and feeling normal for a while. Like I said Teagan is 15 months old today. He is so busy getting into everything, I couldn't be happier. His choice of transportation is scooting. He scoots everywhere and does it very quickly...he can get to the dog food in about .8 seconds! His new best friend is ELMO, anything and everything Elmo, he even knows how to start it on the DVD player! Teagan seems very close to doing so many things like walking, he loves to walk with help, we just have to build his ankle strength. He has made some big improvements in the eating area. He put almost any food to his mouth and will suck or chew it until it is time to swallow and then out it comes. He is sipping very minute amounts of water from an Elmo sippy cup. He loves to pretend to eat with a plate and utensils, but add baby food and the plate goes to the floor.
Anyway that's about all I have time for, thanks for checking in. It is so nice not to have a lot of heart stuff to blog about. We are loving feeling so normal with a small I mean big case of OCD. I pray for many more summers just like this!
It all started with a BONK on the nose
My happy mother's day!
The boys got a trampoline...they both love it, thank heavens for cages
Teagan enjoied going to all of Mason's T-ball games
first time swimming...he loved it

hanging out with mommy
swinging with aunt Marye
tasting some food
rolling around with daddy
Teagan in his new Elmo towel

Vote for Teagan

2009-05-02T13:19:00.004-06:00

We entered Teagan in a Baby Contest to win a trip to Disneyland! Please help us get there by voting for him at westjordanjournal.com, click on baby contest and then his is the very first picture. Click next to his name, scroll through all the other darling babies and then click on vote. We all can do this once a day, on all of our different computers for the whole month of May. Thanks for all of your support!

Happy Easter!

2009-04-13T21:13:00.004-06:00

THIS DEFINITELY BEATS....

THIS...This is Teagan last Easter. Our hearts go out to those who had to celebrate Easter at the hospital this year. We are grateful T got to celebrate at home this year. We even took him to church for the first time...only after our bishop shared a letter (thanks Shauntelle) and we Lysoled and Clorox Wiped our bench. It was a blessing and T did really well, only two pukes. We enjoyed our Easter,we hope you enjoyed your. We hope you all had a moment to reflect on the real reason we celebrate Easter. I know our Savior suffered for all of our pains and sorrows, both physical and emotional...and I have never been more sure of this than I was this past year! I feel my Savior's love in all the world around me!

Living for Eden

2009-04-07T20:37:00.005-06:00

The benefit concert for Paul Cardall was wonderful! We made a girls night out of it: me, Mom, Coke, Kelly, G-ma Maples, Brooke, Sylvia, Kori, and sweet little sleepy Sammie. We sat by Allana, Eric, Natalie, and her family. I got to talk to Michelle (Gracie's Mom), Mindi (McKay's Mom), Jessica (angel Issac's Mom), Ally (Grant's Mom)and ran into a few old friends. I looked for all you other heart families, but I couldn't see you, where were you... Hello?!
My Mom and G-ma got there really early...first in line... to get us great seats...thanks ladies, I had to wait for Ryan to get home to watch the boys. I really enjoined all the performers, they were fun,emotional,touching,inspiring, and breath taking!
I met Paul Cardall for the first time when I was in Young Women's, my favorite YM leader went to collage with him and had Paul come and do a fireside...I knew nothing about his heart. Then this past year when T was having his first surgery, I needed to cancel some dental appointments, after I told the receptionist my reason for canceling she told me, " Brytten I am so sorry, I don't know if you know Paul Cardall, but he is my nephew and he only has half a heart, he is 34 and married and has a little girl." I told her, "I think I know who he is, the pianist... right?" Well long story short every dental appointment since we have talked about Paul and his need for a heart. I finally got to meet Paul for the second time when he played at Gracie's funeral... I also got to meet his beautiful wife and his mother. I hugged his mom first because that is who I felt the biggest connection with... to go through all that we go through as heart mom's without other moms... I don't know how she did it. Both her and Paul gave me the best advice... "LET HIM RUN" ...meaning treat him normal and let him out of his bubble. That's when I decided it really is about QUALITY NOT QUANTITY. We look forward to a great summer...experiencing everything through Teagan's eyes!
Paul is truly an inspiration to me...HE GIVES ME HOPE! No matter what happens to Paul, I know he has helped so many families with CHD'S. He has lived a wonderful life and now he lives as a example to our children and of course for Eden and his family! May our Father in Heaven answer all our prayers and let Paul LIVE FOR EDEN! With tear filled eyes...Thank you Paul for sharing your life with all of us, thanks for sharing your talent and friends and for letting us join in on this very personal journey...You deserve everything our Father has in store for you and your family!
Coke, me, & my Mom...I wish we could have got a picture of everyone we came with.
Michele, Mindi, & me chatting before the show.
Me & Michele
Me & Paul's Mom
Paul Playing Gracie's Song

We Think it's Time...

2009-03-30T12:54:00.004-06:00

We think it's time for a family blog. We hope for no major events this next year with Teagan and since we are trying to return to normal, we want to start another blog, mostly for Mason's sake. He thinks this ia all about T and he wants one. I will keep this one going with doctors appt. and when the Fontan comes, so check in when you can. Our new blog will be: theincrediblepettits.blogspot.com, still haven't desided if it will be private or not, so e-mail me if you want to follow us there, prettiebryttie@gmail.com. Thanks for always being there this past year, this blog has been great to keep everyone informed and to be an emotional outlet on days I thought we would never make it through! See you soon....

1 Year Check- Up

2009-03-27T23:53:00.004-06:00

We went to see Dr. Harris on Wednesday to get what might be our last dose of Synigest and his 1 year check-up. Dr. Harris is very impressed with how well he is doing, all things considered! Our nurse Tammy is out on maternity leave, so we miss her, but wish her the best with her new little guy. It just isn't the same, Tammy's been there from day one, when the whole world came crashing down. Five shots that day, and that's not counting the three he couldn't have. His feeds are not going to change much, we might try to increase the night feeds a bit. But every time I've tried to change his formula to Next-step or anything else I got bloody stools, so we'll stick to the lacto-free stuff. N-E-way, these are his stats for 1.
WEIGHT: 22lbs 12oz.(50%) Harris said we couldn't ask for more!
LENGTH:311/2in.(92%)
HEAD:(69%) (It's a big one!)
Mason really wasn't much bigger than this at one.
He was impressed with his babbling. Teagan likes to say:
SCREAM
COPY CAT NOISES
MA
DA
HI
Teagan likes to play:
FIVE LITTLE MONKEYS(You'll have to see the video)
WAVE (He waves hi and bye to everyone, weather they are on the phone or standing in front of him, he especially likes to wave bye to his therapist when he wants them to leave)
CATCH
SING
DRUM ON ANYTHING
CLAP
SMILE
LAUGH OUT LOUD
PINCH YOUR NECK
PULL OFF YOUR GLASSES
PULL OUT G-MA DEE'S EARRINGS:)
Teagan like to watch:
ELMO
CURIOUS GEORGE
BARNEY
AMERICAN IDOL
DANCING WITH THE STARS
SPIDER-MAN(I wonder why?)
BIG BROTHER (Mason)
ROXY
The most exiting things are:
HE HAS 5 GOING ON 6 TEETH
HE STANDS ALONE AGAINST FURNITURE
IS DOING GREAT IN P.T.
and last but certainly not least, he started to enjoy the taste of some foods:
MARSHMALLOW'S
RITZ CRACKERS
FRIES
CANDY CANE
OREO'S
It's not eating by any means, but it's a step in the right direction. Because lately it was seeming like all we were doing was going backwards with eating and puking. Now mind you all he does is look at it, suck it, look at it and instead of throwing it like usual, he does it again; until he gags or gets a little off and doesn't know what to do with it!
And on this note, as you can tell, since cardiology agrees too, eating is our biggest challenge right now, and he needs help. We have called on every doctor we know of, so now we are turning to other heart kids and our Heavenly Father. Any advice on the subject I would truly appreciate, so please leave a comment or e-mail me: prettiebryttie@gmail.com. The later being we are going to have a special fast on Sunday for the reflux and eating by mouth, all those that would like to join us please do, we feel strength in numbers. Thanks for checking in on us and for the prayers, we are truly blessed with great family and friends!

Sedated Echo

2009-03-27T23:06:00.004-06:00

On Monday, March 23rd Teagan had a sedated echo. We met with Dr. Day and he feels really good about T's heart. He actually told us to put the heart on the back burner and get this kid to eat! His stats were in the low 90's, but I never believe it. At home his best is 87. We discussed our concerns with him, T's stats still seem to drop into the 70's at night ever since his cold. So I have been giving him a little oxygen on those night to keep him up in the 80's. Dr. Day threatened to take away my monitor, in not so many words, but said he is fine, just try to keep him out of the 60's, if you say so doc. He got an IV and did pretty well, considering he is older now and doesn't like cardboard on his wrist! We took him to echo and as he drifted off to la, la land (or so we thought) we left. We had lunch in the fabulous Rainbow Cafe and ran into a few favorites. We got to sit with Alison, Grant's mom, and share a few thoughts. Then we headed back to T. Well low and behold he was already kind of awake so we asked why, since the echo was still going on. They said they gave him all they could and he never really got knocked out and that next time we would need to use something stronger! So we strolled up to recovery and fed him and then back down to carido for the results. Everything looked what I would describe as fine, Dr. day used the word GREAT. Well the kid only has half a heart, not so GREAT to me, but I'm not the doctor. I'll take GREAT to mean we are not in failure and can come back in three months. The one side isn't squeezing as well so we went up on his Digioxin a bit and there was mild leakage from what I could understand and remember, but all I really hear is what I need to do as his mom to make sure we get to come back in three months. Over all it was a long day at PCMC, but grateful it wasn't longer and we all got to come home to rest! Thank G-ma Dee for keeping Mace!
P.S. So you know how he hasn't been enjoying the doctors visits so well lately, Dr. Day got an A+. He had a little finger puppet monkey to check T's pulses and such, it was a real hit since T likes monkeys so much! Thanks for making it easier on us, I know it was an answer to a lot of prayers also.
The sedation finally kicked in;)

I'm ready to get out of here
Daddy's mustache is not for real, it's Mustache March, something the guys do in the PICU for March Madness and it meant so much to us last year (it brought so much comic relief, when we didn't find very much funny at the time) that Ryan wanted to do it this year, he even got his two brothers involved. He had bracelets made and everything and he dropped some off to the PICU. He went a little further and added organ donation to the meaning, so next year we hope even more will get involved!(hint,hint)

Birthday Party part 2

2009-03-27T21:36:00.007-06:00

Sorry, but I found more pictures. So here they are:
Just the Four of US, Happy to be celebrating at HOME!
The Party set up, in the corner can you see the donor registration? We asked everyone to become one for Teagan. He just might need it!

This Heart is so cool, my Mom had it made for Teagan, for Christmas. It's a puzzle, you can't see the brake very well, but it's in half. The right side says, "Our INCREDIBLE Teagan Dash Pettit". The left side is in a bunch of smaller pieces that are all of my side of the family who have helped so much to make his HEART WHOLE! So clever, that's my Mom for ya! Thanks to Brian for making it all come together.

Speedy, the turtle! From, Big G and Big Mace, He loves it!
Everyone else so kindly gave to his medical fund with cash and gift cards to Jolly's Pharmacy. Thanks Guys!
The big brothers of Teagan and Thatcher, they have been through a lot too this year.

These are 12 balloons from Big G and Big Mace, tied to money and Speedy. One balloon for every INCREDIBLE month we have celebrated the gift that is his life! And YES that is an Incredible's balloon! Thanks G
Eric and Allana's family gave him the big smiley in the middle with their card, so cute!

And last but not least, my beautiful invitations. We hope you all feel like you were there, we sure wish you could have been!
So you may be asking why so many pictures, why not do a slideshow? Well the anwser is my girlfriends have offered to put this in a book for me and we don't think you can publish the slideshows.
All you readers and veiwers out there, please try to post something even if it's just your name, so we know everyone who thought of Teagan his first year. We want to put this in a book for him to have forever and ever to show him just what it took to have him here!

Teagan is 1!

2009-03-25T14:22:00.005-06:00

(the Rowley entourage)
Check out these cheeks!

I'm sure people are going crazy that I haven't posted about Teagan's birthday, but I have a good reason. You all know about my camera troubles, so when I sent it in to get fixed it didn't get done in time for his his party.My photographer went back to collage down South somewhere unmentionable, so needless to say I'm just getting my pictures now. Here is the long awaited post about his INCREDIBLE day:
Teagan turned one years old on March 10th, 2009, it was a long awaited day that we were never quite sure would come. We feel extremely blessed to be able to have him here with us to celebrate his first year. Teagan has endured a lot this past year, more than most of us will ever endure. Teagan is a strength to our family and has taught me patience and to enjoy everyday to it's fullest!
Teagan's picture was on GTU that morning with the other kids who were celebrating their 1st birthday.
I made some super cute birthday announcements, if I do say so myself:) We invited family and close friends to come over and celebrate at home with us. Of course everyone needed a flu shot and to feel their very best or we would have invited more. We had a few surprise visitors from out of town who wouldn't of missed this milestone for anything, Aunt Kimmie from AZ, and Aunt Chelsee from NC. We were grateful to have them. One of our favorite nurses came, Megan Bland and our special heart family, the Nelson's. We want to thank everyone who took time out of their busy schedule to come celebrate, we know more would have been there, but were not feeling well and it means even more that you didn't come and bring sickness. I want to thank my Mom and Chels for watching the boys and running errands, so I could get the house perfect!
I had some very cute Incredible's cookies made, they turned out perfect. It was nice to visit and celebrate Teagan's INCREDIBLE year. We pray for many more INCREDIBLE years!

The very tired Birthday boy!

The out of town aunties!

Big G and Dash checking out the cookies (that he wouldn't eat!)

Blowing out his candle, with brother's help, of course!

Thatcher and Teagan, brother's for life!

(Brytten, G-ma Dee, Coke(Cortney), Chelsee)

Sisters

Our LUCKY Day!

2009-03-17T15:35:00.011-06:00

Last Year:

This Year:

So I know I am really behind on posting, everyone has gone home now and we can return to normalcy. Today is a very special day, one year ago today Teagan was having his Norwood. We celebrated St. Patty's Day in the waiting room praying everything was going well in the O.R. We feel very LUCKY to celebrate this year at home loving on our little leprechaun. We also made some really great friends that day. Thatcher was in the other O.R. with Dr. Hawkins, so Bonnie was delivering updates to both of us. Tami came over to me and gave me a hug and introduced herself as a fellow heart mom. While waiting she got us all hooked up with IHH. When we went back to the PICU to finally see Teagan, Thatcher was his roommate. We became great friends and the Nielsen's came to Teagan's party last week and Tami made the boys these darling shirts that say: "I have the luck of the Irish.... I'm a HEART HERO!" He looks so cute! Mason also loves this day since everyone is in GREEN! Happy St. Patrick's Day, CHEERS to many more!!!

Showing off their chick magnets! Two of the LUCKIEST guys I know!

We are Home!

2009-03-07T20:48:00.002-07:00

We are home, and the four of us are all under one roof. Teagan is neededing less and less oxygen, hardly any during the day and about .5 liter at night. He will be fine. I did want to clarify that Teagan did NOT get RSV, thanks to his shots. It was just a bad chest cold that hit a boy with only half a heart hard. Thanks for all the prayers, I just pray now that me and Mason won't get it.
I don't have a lot more to say right now, due to high emotions from todays event. I just wanted everyone to know we are home and doing better. Thanks for checking in, I will blog later about Gracie's beautiful tribute.

I Need Oxygen to Breathe

2009-03-03T19:04:00.004-07:00

Despite our best efforts TEAGAN IS SICK, and requiring full time oxygen to keep his stats up. I called cardiology today and they said it's ok to need 2 liters or so, these kids have no reserve. I am so sorry for the Gledhill's loss, we felt incredible close to Gracie and I had the chance to visit her and Michele right before she got her heart, it was a special time to talk with her and see Gracie it is all way to close to home, but I really haven't even had a chance to morn her passing yet; due to my added anxiety for Teagan. I really have tried so hard to keep this from happening and it kills me that he is sick. We are back at my Mom's and we are both running on very little sleep due to the oxygen dance we had last night, to the point where I had to call home health at 5am to get oxygen ASAP. Ryan had to come out at 6 to bring our big tank that I knew was almost empty, that was all we had. Long story short we need some extra prayers that T can fight this and get back to himself real soon, especially with his b-day next week. Please pray the rest of us won't get it and we can stay well the rest of the season.
We love you Gledhill's, may you feel the peace our saviors love brings, I know you would give anything to stay up all night with Gracie, that's what I had to keep telling myself and that's what I'm running on today. Thanks for your example and your friendship!

Out Sick

2009-02-28T20:50:00.002-07:00

Well we have tried all winter to keep our family healthy and germ-free, but it finally found us. Ryan started getting sick last weekend and I sent him to the basement to live:) Well by Tuesday he was so bad I told him to go to insta care to make sure it wasn't something they could treat, on that same day Teagan got his fourth Synagist shot, it tured out he had adult RSV. So that night me and the boys moved out and went to my Mom's for a few nights. It was like a mini va-ca, homemade food, sleeping in, entertainment for the boys, it was nice, we just miss Daddy. Then my Mom went out of town on a trip she had been planing for awhile so we headed to Big G's for the same great hospitality! So low and behold Teagan started coughing in the night and by Thursday he was pulling on his ears, that night me and him got hardly any sleep and his stats were dropping, I almost put him on oxygen. So Friday morning we went to see Dr. Harris. No fever, ears looked fine, so he figures it might be a cold, but not too worried about it turning to RSV, his lungs sounded fine. He told me to watch his stats, use oxygen if needed, watch for labored breathing, all things I normally do. So $15 for peace of mind, I'll take it! He still is coughing, but his stats have been in the 80, where they need to be and we both slept a lot better last night, I pray for another good one tonight. I think a lot of it might be teething, he is getting his two top teeth and maybe those one year molars, I hear the front teeth are the most painful, I don't know. I hate to blame it all on teeth and I know I can't, so we will watch him and pray he gets well soon. Ryan is feeling better so I think we will go home Monday night, but for now I just want to thank everyone for taking us in and making us feel at home: Mom, Dad, Big G, Big Mace, Kori, Cole (maybe not:), & especially Sammie!
On a side note: We send special prayers out to Gracie Gledhill and her family, Gracie Gourley and her family, and all the other special heart kiddos who need extra help right now, may our Heavenly Father wrap his loving arms around them. We love you all.

Missing Tooth

2009-02-17T15:29:00.003-07:00

Mason has had some problems with his front two teeth. We took the bottle away when he turned one, but then we started letting him go to bed with apple juice in a sippy cup, BIG MISTAKE! The other day he was complaining about his tooth hurting and I noticed it was loose and his gum above it didn't look so good. I took him to the dentist and they put him on antibiotics and said to try and wiggle it out, well we couldn't get it out and the infection looked worse, so Ryan took him in this morning and he came home like this:

Well several dollars later and some laughing gas, no tooth! Apparently the new tooth won't grow in for FOUR YEARS! Oh well,a year or so ago this would have been a big deal, but when your other child has gone through what Teagan has gone through, this is just a walk in the park!

Mason's B-Day Video

2009-02-17T15:07:00.002-07:00

Mason had a great party, I talked about a few posts ago, but I didn't have the pictures. Enjoy, thanks again to everyone who bore the cold and made it to his party!

Happy Valentine's Day & CHD Awareness

2009-02-14T16:27:00.006-07:00

I am copying this post from Mindy, Mckay's mom, I think she said it best:
Today we'll all be thinking about our hearts--our sweethearts, our dear hearts, those with big hearts who will leave us feeling all kinds of fluttery with warm Valentine wishes. May I ask that you remember some of the littlest hearts this week, too?

February 7-14 is Congenital Heart Defect (CHD) Awareness Week. And although, CHD is the most frequently occurring birth defect and the leading cause of birth-defect related deaths it receives little to no funding for research, prevention or awareness. It's time for that to change. Here are some facts about CHD that may interest you:

Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, less fatal CHDs are not detected until adolescence or adulthood.

Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

Only about 30% of the children who need a heart transplant receive one in time.

About 40,000 units of blood are used daily & only about 5% of adults who can donate blood do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease. It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year.

It's time to talk about Congenital Heart Defects. Excuse my soapbox, but it's time to give families more advice than to consider termination. These kids are worth saving! It's time to raise awareness and start to look for the reasons CHD is becoming shockingly more common.

What can you do? Support research. Be an organ donor. Give blood. Donate platelets.

I never knew much about CHD's before this past year and now it is near and dear to my heart. Not only will my son suffer from one for the rest of his life, but we have made so many friends whose children also suffer or they suffer the loss of their heart baby. Please take a moment today to ponder these facts. Have a great Valentine's Day with the ones you love, these are mine:

11 Months Old & Big Brother is 4!

2009-02-12T11:31:00.005-07:00

(He looks kind of devilish, but he is far from it!)
Teagan is 11 months old now, almost 1 I can not believe it! Of course we celebrated, G-ma Dee brought over a balloon and some Valentines presents (can you believe our family didn't have the Incredible's movie?)! Teagan is doing well and staying pretty health... knock on wood! A stuffy nose here and there, that's all. Teagan is finally putting weight on his legs, it's a big step for him, but they really want him to crawl first. The problem is he hates his tummy time and has no arm strength. Eating is about the same, we could really use some help in this area, please pray T will take some food by mouth and that he can out grow the puking. I can't believe how much he is puking through his Nissen, it really stinks, we have this surgery to stop it and after only four months he has broke though it. At least his lung are strong enough not to aspirate. It is very frustrating and then I read Gracie's blog and I just had to count my blessings, T's little girlfriend needs a heart transplant, that is her best chance to survive. We are praying for her and her family. So over all T is big and growing and doing well! We have scheduled a sedated echo. on March 23 to see how things look on the inside.
We had a couple of visits with G.I., they went, if you know what I mean... no changes for the better even after changing a med or two. We do all of his feeds by gravity now, it's more natural, but harder for the person feeding him. Dr. Jackson did feel like it was time to change his g-tube button and wanted to help us,so we went back a week or so later with the button home health sent us, the actually change went well...aside from T screaming from his recent fear of doctors and their offices, even the paper on the exam table freaks him out now, anyway it was going fine until we went to put on the extension and realized IT WAS A DIFFERENT BUTTON! Luckily Dr. Jackson was able to locate the right one, but it was two feet long, not good for a baby who can't handle all that water in his stomach. So after two calls to home health, two deliveries from h.h., a very long day of meds and feeds we got it all straightened out!
The funnest thing this past month was Mason turning four! Don't worry he did plenty of celebrating, he started the month celebrating with all the other January Pettit birthdays at G-ma Stacey's, then the Friday before his b-day he spent the day with Pop and G-ma Dee going shopping, having lunch, and going to Hotel for Dogs. They had a great day! Then on the 24Th we had a really fun sledding party thanks to the Hardey's renting out their backyard. And despite the rain we had fun roasting mallows, making smores, sipping hot chocolate, and sledding! Thanks to everyone who bore the cold and came and a special thanks to my Mom who staid home with T. That night we took Mason to his favorite restaurant, you guessed it, Tepinaki(sp)! Mason is lucky enough to share his b-day with my cousin Coy, so Big G made a delicious dinner for the both of them and we played a fun game about the b-day boys. Then the actual day came, January 26Th, G-ma Dee brought Donalds (McDonald's), we had a few visitors, and I attempted to make a Ben 10 cake (don't ask), at least it tasted good! My cute neighbor made Mason the real Ben 10 shirt and he dressed like Ben 10 for the day, so after all that I felt like it qualified for a Ben 10 party, but as I was putting him to bed he said, "when am I going to have my real Ben 10 party?" My response was "I thought this was," and he said,"It's not a real Ben 10 party until we paint the house green!" "Mason we are not painting the house green, now go to bed." It's never enough with these kids:) Well, Happy CHD Awareness Week and Happy Valentines Day, we love you all! Stay happy, stay healthy,may God bless all these kids and their families!

(Mason turned four and forgot how to smile:)

10 months old

2009-01-12T18:24:00.004-07:00

Well this blog is turning into a monthly thing isn't it?! Teagan turned 10 months on the 10th. He is officially sitting up all by himself, YEA! He has two teeth and loves to play with all of his new toys from Christmas. He has had two sets of Synagis shots and appointments for plenty more, we will keep him home for the rest of the winter and hopefully he can get out more come spring. Eating is still a mystery and we will just keep trying until he gets it. I sit down with him twice a day and give him baby food; some gets in, a small amount of that actually gets swallowed and most of it ends up all over his face, hands, and hair!
It's a funny thing when people ask how Teagan is, I never know quite what to say, and I'm sure you other heart moms can relate, to us he is doing really well and we are excited about his daily advancements, but when you tell people he is doing really well they think... oh great he will just keep getting better yea!... well not exactly, but how do you explain that in a short conversation? If you spent a day with us you probably wouldn't call it great and normal, but to us the gaging, puking, being feed through a tube straight into his stomach, and several meds is NORMAL. Me and Ryan go out together and separately, we attend functions and leave Teagan home with Grandma. Our family is running, we are in a really good place! Teagan sleeps great, 11-12 hours straight (I get up twice to add food to his continuous feed and give four meds). So to us this is our Normal so when I say he is doing great, this is our definition of great!
Teagan went to G.I.(the tummy doctor), in short although the appointment was long, we adjusted his meds, and started feeding him without the pump (by gravity). Dr. Jackson G.I. just can't believe how big he is 21 lbs at 10 months is big for a heart baby, even a tube feed heart baby!
To back track a little we had a great December, lots of parties and celebrating. My Mom, Big G, and my aunts put together some really great baskets for the families that have to wait in the P.I.C.U. waiting room, full of blankets, pillows, toiletries, treats, ect. They were so wonderful, those are some long, hard days that you have to sit in that room and we pray that stuff just made it a little more bearable. We had a wonderful Christmas Eve, Christmas Day (snowed in) and a great week home together! We hope you all had a happy and healthy Christmas season!
I hope you like the slide show (it's long):

9 months old

2008-12-10T19:02:00.005-07:00

We got to celebrate nine months today, yea! He has been out as long as he was in:) The entourage came and we had lunch and Big G brought his traditional balloon. We had a fun day. Teagan loves to clap, he got his first tooth on Sunday, he is trying to wave bye-bye, he can sit up for a little while on his own, he weighs 20lbs. 7oz., he got his first Synergist shots (it took two because he is so big:), he got his booster flu shot, he loves to copy us and make funny noises! we love you Teagan and are so glad to be able to celebrate the holidays with you, we know a lot of families who wish they could celebrate with their sweet- HEARTS and we don't take a day for granted.
We had just left Mason at G-ma Dee's for a sleepover when we were on our way home that I discovered T's tooth. I imediately called my Dad and when he hung up with me he said to my Mom and Mason, "Big news everyone, Teagan got his first tooth." So Mason want to see the news and check the internet for the BIG NEWS! They couldn't find the story, but the next day Mason saw it for himself and that was good enough. Just another funny from Mason:)
Here is what our family has been up to for the last month or so:

My Happy Thanksgiving!

2008-11-28T21:32:00.004-07:00

It was a wonderful first Thanksgiving for Teagan,(better than Mason's first, he got croup)just to have him here and able to leave the house. We stopped by the Pettit's to say hi and then on to Big G's for a delicious feast with family who all got a "shot in the arm for Teagan"! Teagan spent a little time in his high chair but was not very interested in the food, oh well. We had a great time with family and just hanging out. Dad and Mason escaped to go see the movie Bolt and then came back to pick up Mom and T. We had a great day and took some time to count our many blessings: Teagan is here and happy and thriving, he learned to clap on Wednesday, we are staying healthy for the most part, We have wonderful friends and family who help us and pray for us, and a loving Father in Heaven who has our best interests at HEART. On a side note Mason had a funny story. He had a sleep over a G-ma Dee's the other day and the next morning G-ma told Mace that they needed to go get the turkey. Mason let her know that he didn't think it was such a great idea to put a turkey in the car and that it would scare him to take it to Big G's feathers and all. G-ma assured him that the turkey was already dead and everything would be ok!
Hope you had a peaceful and Happy Thanksgiving with the ones you love!

8 Months old!

2008-11-12T18:17:00.004-07:00

Teagan is now eight months old as of the 10th. He had lots of celebrating over the weekend as Ryan and I were out of town and G-ma Dee, Kimmy & Big G took really good care of him and Mason. Brookie brought Teagie a cute new heart outfit and Avery made a fun card that T loved to crumple! Not much new to report, T is about the same with his eating. Our speech Therapist thinks he is improving, just slowly, he will allow apples, oranges and a few other foods to touch his lips. He wiggles all over and rolls to both sides, just not over to his tummy. He giggles a lot more and I think his voice is not sounding so raspy. He looks good and is doing as well as we could hope for. We hear of others with HLHS returning to our Heavenly Father and are just grateful he is here and happy, G-tube and all! We also heard of one of Ryan's high school friends who just lost their baby to a heart condition, may they feel the comforter at this time.
Like I said Ryan and I got away for the weekend and went down to Mesquite. It was wonderful to get away and so nice to concentrate on each other after being so preoccupied for the last several months. We relaxed and ate yummy food and shopped and had spa treatments, it was wonderful. We left Mason a few time with my Mom for weekend get aways at T's age and it was fine leaving him, I knew he was in good hands and I usually didn't even call. But leaving Teagan was a whole nother story, I cried leaving the driveway and I called enough that my Mom finally said, "I promise we will call if there is a problem". I knew I left him in the greatest hands and with Kim flying in to help (side note, who does that, fly in to tend their great-nephews, but Kim is amazing and I was so thankful to her, I know it was easier on my Mom having her here.) so I really had no need to worry. We were mostly scared that his G-tube would come out and I haven't even had to put that back in yet, knock on wood. Long story short, we had a great time, the boys were spoiled and G-ma Dee was wiped out. So it just been me and the boys hanging out recovering from our busy weekend. We do have to get blood work done tomorrow for our appt. with Immunology next Thurs. so hopefully I'll have an update then.
P.S. The reason it's Wednesday and not Monday that I'm updating this is because I finally got around to reading Breaking Dawn on our drive down and I haven't put it down since and I finish it this morning! Now I can get back to my Life, just in time for the movie:)
P.S.S. No picture because Mason spilled pop on my camera.

Our Halloween Weekend 2008

2008-11-02T21:59:00.001-07:00

Happy Halloween!

2008-11-02T19:09:00.002-07:00

We had a great Halloween. We started by sleeping over at Big G's (Teagan's first sleep over besides the hospital) so that me and Mason could go to Sammie's parade bright and early. G-ma Dee and Big Mace stayed back with T. I think the kids were looking harder at me and Mace as The Incredibles then we were looking at them. Big G made homemade Chicken Noodle Soup and we celebrated her 67Th B-day! I had given her a haircut a few days earlier for her gift. Mace went trick-or-treating with Sammie and Avery and had a great time. We hope all of you enjoyed a Happy Halloween with your family and friends!
Teagan had a milestone on Saturday the 1st, he rolled over from tummy to back on his right side, it was so exciting! We cherish everyday and every moment, I don't think I could have got Ryan in that outfit any other year, but this year was special, our Incredible boy was here to celebrate his first Halloween and we pray for many more to come!
We are official on lock down. Teagan will only be allowed around people that have a flu shot, no one can come into our house without one and T will not be going anywhere that not every person has a shot. We ask that people warn us if you think you might have a cold or any other sickness if we plan on seeing you. Dr. Day said this a pretty crucial winter and if we can get through this one life can get more normal, of course we have to figure out his immune system (we check on that on the 20th). So needless to say we are going to be extremely careful this winter to hopefully insure many more.

Our Weekend!

2008-10-27T20:00:00.001-06:00

Happy Birthday POP!

2008-10-24T23:27:00.000-06:00

We Love you, thanks for all you do!

No News is Good News...SORRY!

2008-10-23T22:06:00.003-06:00

I have been so busy trying to be normal I almost forgot we have a family out there that is dying to know what is going on with Mr. T. We got to celebrate another monthly b-day, Teagan turned 7 months on the 10Th and he is doing as well as he can. His feeding issues are our number one problem, he is very defencive about his mouth, the funny thing is he sucks his binky like a champ, but as soon as you try to trade it for a nipple he stops and gets mad, put the binky back in and he is as happy as a clam, we have no idea how he knows the difference because we even try it it while he is fast asleep, the nipples are practically the same. With the help of speech therapy we even tried to skip the bottle and go right to baby food, but he doesn't want anything to do with that either, so we are taking baby steps, very small baby steps, like play with water on q-tip and dripping it on his lips, fingers in mouth, wet wash cloth in mouth and smelling spices and fruit, and touching solid food for play i.e. apple, candy circus peanut, orange peel, anything we are eating that has a smell and is safe for him, of course it doesn't get past his lips. He does put toys and his feet and hands in his mouth so at least we have something to start with. I mentioned our speech therapist, we also have occupational therapy, and early intervention so between the three we have in home visits around four times a week, they work on his eating or lack there of, and rolling over, and sitting up, which both of those he is very close to achieving. Well despite all the feeding problems he is not suffering in the weight department, he is huge, so big in fact that we get to mix his food the regular way 2 scoops to 4oz. of water. He eats every three hours for an hour and then continuous at night from 10:30-9:30, 35ml hour. We got all caught up on Teagan immunizations, at least the ones he can have, on Monday. He weighed in at a Whopping 18lbs. 8oz. He stats @ 86 awake and @ 80-84 asleep, we just need him above 80. He smiles and growls, that is from being intubeated, and he loves to play. It actually feels NORMAL and so normal in fact that sometimes when we are just hanging out as a family, eating dinner I start to think that this whole heart problem is just a bad dream and really we are just a normal family eating sloppy joes and talking about our day, with the baby in his bouncer, just hanging out, and then it hits me like a ton of bricks when T starts to gag and turn cherry red and sweat and look like he might just blow if we don't release the pressure and then it is a mad dash for the syringe and venting him. And then we realize our reality, but you know what, it's all worth it, every med, every feed, every vent, every gag, every trial; just to be able to look in those chocolate brown eyes and see the man he will become. His spirit is wise beyond our years and his smile tells me thank you a hundred fold, someday I think about what if we would have chosen option three and that maybe it was selfish to put him through these surgeries and spending four of his seven month in a hospital, but seeing him grow and smile and light up a room lets me know this is his mission, we are living it. I start to worry, will his mission on earth be shorter then I hope and that's when Ryan reminds me it FAITH NOT FEAR. Faith that our Heavenly Father is in charge and all of our lives are in his hands. Faith that Teagan's mission will be fulfilled. Faith that our Heavenly Father loves us and never gives us more than we can handle. So for now thank you for checking in on us, thank you for praying for us-we need it, and thank you for being apart of our lives.
P.S. Thank you to all of you who have taken a shot in the arm for Teagan, it means so much to know that you love us enough to do it. We are looking forward to a happy and healthy holiday season! (And I will try to blog at least weekly!)

a SHOT in the arm FOR TEAGAN

2008-10-01T18:09:00.002-06:00

Many of you may of noticed my list to the right called, A shot in the arm for Teagan. This is our fun little way of keeping track of everyone who has gotten a flu shot to help keep Teagan well this winter. We ask and encourage everyone to get a flu shot. We have been insured by several different doctors that it is not too early to get it and it will last for a year. It could take a few weeks to work so get it soon so we can spend the holidays with you. Dr. Harris told us something interesting that we would like everyone to pay attention to, "A adult is well when they feel better, kids on the other hand, can still be contagious for three weeks after they feel better." We look forward to a Happy and Healthy holiday season!
P.S. let me know when you get your shot so I can add you to the list!

Baby Brooklyn Bailey

2008-09-27T20:16:00.003-06:00

Brooklyn returned to our Heavenly Father today. She fought a real fight and after so much her body is finally at rest. Ryan and I got to know Brad and Angie from early on, when they arrived in the PIUC. They too were undiagnosed and in were in quite a stage of shock. We got to be very close, going to lunch, celebrating b-days, and late night chats in my room. I pray they can feel our Savior's love at this hard time and know that when they feel like no one understands, He does. I send lots of love their way and I hope you can all remember them in your prayers. They know they must go on for they have two other beautiful children, Austin and Kaytlin (Mason's friends).
After seeing so many of our sweet-HEART's pass away, I can't help but ask why? I find comfort from a quote from the Prophet Joseph Smith, who laid to rest four of his first five children. It reads:"This world is a very wicked world; and it... grows more wicked and corrupt... The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore if rightly considered, instead of morning we have reason to rejoice as they are delivered from evil, and we too shall have them again..." I pray this can bring some comfort to the families that have lost little ones, as it has brought me some understanding and comfort in my trial.

The Glenn & Home Again

2008-09-23T18:56:00.001-06:00

Dr. Appts

2008-09-22T18:15:00.002-06:00

Well it has been a week or so of doctors appointments. We have seen Dr. Harris twice since my last post, first because we felt like he was sick, Dr, Harris thinks it might have been a little tummy bug that was causing the extra irritability and diarrhea. Then we went to immunology to check on all the test results they took while we were still in the hospital to figure out why his t-cells are low. They can't quite figure it out because all the tests come back negative for anything major like Di George or HIV (from all of his blood transfusions), but the white blood count is still low and when they inject the cells with infections and such, they have a hard time fighting. Dr.Zeft thinks it has to do with a combination of his Thymus being removed during heart surgery (everyone's is) and his extreme case of Cylothorox and not being up to date on his immunizations. He did want T to go ahead and get caught up on his immunizations, just not the live ones. We go back in two months to draw more blood and check the numbers again and see if there is any improvement, for now he is on a special med called Septra and we need to keep him as germ free as possible. So that news sent us back to Dr. Harris to get caught up on shots, he got his four month ones that he had missed because of surgery and then he will have his six month ones and his flu shot and Synergist shots next month. While we were there they treated it like a well visit and did his measurements and weight : 28 1/8 in. long (94%) and 16lbs. 10oz. (35%). Then today it was cardiology and a swallow study, Ryan couldn't come this time so Big G and Big Mace took us and were very kind to give up their day to be with us at the hospital. Dr. Day thinks everything looks great, we get to come off Lasix and he was stating 94, I don't know if I believe it, but they couldn't get a lower number after readjusting the pulse ox several times. His x-ray looked good and his EKG. He weighed 16lbs. 14oz., but it was a different scale so I don't know. Dr. Day wants to see us in two months also. Then we had the swallow study, after we all fasted yesterday Teagan finally passed, meaning he protected his airway when he swallowed and didn't aspirate, it doesn't mean he liked it or wants to do it, but at least now we know we can try bottles and soft baby food and rice cereal after we get the go ahead from general surgery to bolus feed. We will need to work with a speech therapist and an early interventionist to help Teagan, but we are moving forward and that is great news! Besides all the doctors appt. we are just trying to be as normal as we can, we still deal with a lot of gaging and having to vent the G-tube, we are working on sitting up and rolling over. T is getting better head control everyday and loves to grab toys and play under his baby gym. His favorite place to sleep is in his swing or our arms. Life is pretty good right now, we are enjoying everyday we get to be together and under one roof, we don't take a day for granted, for we know that everyone is not so lucky and it is hard to balance hospital life and real life! We send lots of prayers and good wishes to: Megan, Daxton, Elaina, Brooklyn, and all the other kidos who are still in the hospital, whatever state that might be.

Where Do I Start?

2008-09-11T10:21:00.005-06:00

Wow, lots has been happening now that we are home and I think I will be lucky if I can blog weekly. The latest and greatest news is Daxton got his new heart yesterday on Teagan's 6 month b-day. I was able to go sit with Hilary and her family during the surgery because my wonderful Mom and Big G stayed home with my boys. Hilary has a great support system, I don't know many people whose mom and mother-in-law are best friends and work so well together to help Hilary with her house, girls and t-shirts! Once again I was very touched by being able to see Daxton's old heart it was big for his body, but still a very small heart that was very sick. Dr. Kaza, and may I say what a wonderful surgeon he is so kind and personable with a very funny Utah story ask me about it, anyway Dr. Kaza came out to tell Ryan and Hilary how well the surgery went and all I can remember him saying is, "Daxton's heart was very sick, his BT shunt shouldn't have lasted this long, it is a testament to you as his parents that he is still here." It brings tears to my eyes just to type it. I hope Daxton continues to do well and can get home real soon, like a girl with ruby slippers once said, "There is no place like home." Being home has been great for us we are establishing our new normal, I kind of forget when people come to visit and T has a episode of wrenching and gaging, that it scares people because that is getting pretty normal to me. I still hope it will go away in a few weeks like GI plans.
Amber is back and we are so glad to have her, she does a great job with Teagan and it is very nice to get a full night's sleep. We are only having her three nights a week instead of five, but she stays longer from 10-8. Thanks Amber for giving up your nights for us and especially for loving our little man so much!
We went to see Dr. Harris on Tuesday and he is happy with how well he looks, he gained weight 16lbs. 8oz., it is just a miracle because I don't think he is getting enough food. Dr. Harris did inform me and my Mom that anyone who will be around T this winter, especially kids will need to have a flu shot. So if you come over after Nov. you must have had a flu shot. T not only has to have a flu shot, he also needs these special RSV shots (Synergist?) every month up until April so he doesn't end up back in the hospital.
I forgot to mention in my last post that Ryan and I celebrated our 6th wedding anniversary on the 5th. My Mom made us dinner and then we loaded the boys in the car and went to get take-out ice cream from Leatherby's. Not very romantic, but a dream come true for me. We have never been in the car as a family to go out. T has never been in the car after dark, he thought it was so cool and Mason was very excited to have his brother next to him.
On Monday me and the boys went with G-ma Dee and Big G to UVU to take our new college student, Cortney some things. We went to lunch at Fridays, also a first for T, he has never been in a restaurant. The long car ride was also a first. Cortney seems to be having a great time at school and meeting new friends, it is an experience I never had and I am glad she is doing it.
Teagan had a rough night last night, G-ma Dee stayed over since Ryan is in Vegas for business, and she stayed up with him and he was awake and moaning and even screaming from 3:30 am on, she gave him two doses of Tylenol and it didn't touch him. I called Bonnie to see if see thinks it could be withdrawals, but she didn't think so. He is also having runny poops and so we think it might be his formula. I called Stacey and she brought out new formula. I hope it helps, he is finally resting from about 9am on and I hope the day will just keep getting better. I called Dr. Harris also and of course on the day I really need him he is out until Friday.
Last but not least Teagan celebrated six months yesterday, the 10th, another month we feel blessed to have him with us. Big G, Kori, and Brooke came over with lunch, balloons, and some cute new outfits! I told my friend Angie and she said "If you do this much for monthly b-days I can't imagine his 1st b-day." Well you just wait!
Well I told you I had a lot to say and I'm sure I've forgotten stuff, I do want to send a few shout out's:
-to Ryan for being so supportive while I was at the hospital, for hiring people to clean the house, and for working so hard in this crazy market to pay for all of our new expenses.
-to Mason for giving up his mommy for so long, I hope you know I would do the same for you.
-to my Mom for being here all day every day and even some nights so I can catch up on rest and getting my house back in order.
-to my Dad for allowing my Mom to be gone to much.
-to Stacey for dinner and the formula run.
-to Michon and G-ma Maples for a delicious dinner on Sunday
-to Jeri and girls for the gas card
-to Big G for all of the Heart clothes, dinners, and making each monthly b-day so special
-to Big Mace for all the nights you have stayed up with Mom
-to Scott and Chris for making my b-day at the hospital so memorable
-to Kori for decorating the house
-to Brooke for doing all my laundry
-to Kim and Mike for making 2 special trips out to see us especially on your b-day
-to Chels for coming out to see T and spending the night at the hospital with me
-to Pam and Holly and the Bishop and the rest of the ward for all of your visits and kind words
-to my Heart Moms for being there for me and understanding me
-to everyone else who have fasted, prayed, put our names in the temple, left comments
THANK YOU WITH ALL OF MY HEART!

Home Again, Home Again Jigity Jig!

2008-09-05T17:05:00.003-06:00

Teagan made it home yesterday at about 4pm. He is doing great and it feels good to be home. We had a rough last night at the hospital, but I said just get us out of here. My Mom and Big G came to get us and after saying our goodbyes and shedding a few tears, we were on our way. I was not as scared this time, but it was bitter sweet to leave so many friends. Don't worry we have plenty of appt. to let us visit. I can't believe how much time has passed, it felt like the same day over and over and now it is six weeks later and Sept. Me and Ryan did it by ourselves last night and T did great until 5:30am and by then I had already been up every hour for meds or feeds and was exhausted, so Ryan spent the early morning with him. Grandma Dee is here and has been taking care of him while I got a nap. T likes being wireless and has even taken a few trips to his room! He looks great and is happy and acts a lot older than when we took him in. I hope his heart will be good and his body will stay healthy until we have to have the Fontan when he is two or three.
Mason is happy to have his Mom and Brother home, but needs some adjusting to get back to his usual routine, some where along the line he thinks he can have melted noodles for breakfast (it must be a Arizona thing) and after he screamed for two hours I finally got him to have some buttered toast! Oh well, we will figure it out, one day at a time!

Prayers Anwsered!

2008-09-03T00:31:00.002-06:00

Well all of your prayers must have worked because Megan got her heart today. Paula Megan's mom came in our room this morning, right after me and Teagan had just laid down for our morning nap and I thought go out we can talk later, but she had big news, Megan is getting her heart. Megan had a few request from us: to hold T until she had to go and for me to french braid her hair when she got out of the shower. We did both and T was just an angel while she held him! I sat with Paula during surgery ans guess what they brought out Megan's old heart, WOW what a thing to see I have pictures to post, it was large and stretched out and the left side was bigger than the right, what a sight to see, such a miracle! I am grateful Megan has allowed me into her life and I will forever be touched by her Christ-like spirit. Me and Hilary immediately started to bawl and I actually had to step out. When they said everything went well we had a prayer It was a lovely thing. May the Lord bless Megan and comfort her mom this night and in the coming days. I kept saying the reason we are here so long is to see one of our friends get a heart and sure enough we have and it looks like we will be going home tomorrow. I pray with all my heart that little Daxton is next and we can witness that miracle too, please pray with me, it seems to work!

Me and My Megan!

2008-09-01T22:34:00.000-06:00

#1 babysitter!

Eat Baby, Please Eat!!!

2008-09-01T21:05:00.002-06:00

Well we are still at our mansion on the hill, just chilling! Teagan is doing ok, he just can not seem to tolerate his feeds. It has just been this same roller coaster for the past week, we try to get him to full feeds and that starts the wrenching cycle and then we go back down to hardly nothing and then we work back up. We are currently on 30CC out of the 38 that he needs and we are praying for a good night! We continue to be the welcoming committee and the meet and greeter. Teagan has made many friends that will last a life time. I need to post pictures of his babysitter Megan, she is 15 and is here waiting for a new heart, she comes and holds T at least twice a day, only if she eats. Please send some prays her way and for her mom, Paula and family, they are from St. George and their family has had to divide and concur. N-E-way it's slow go, but I'm fine up here, I miss my Mason and not being able to sleep in the same bed as Ryan, but I like the people up here, the staff is so good to us and they understand our condition. Our friends are awesome, I don't know what I'll do when I can't see them everyday. I tell them we can't leave because T is waiting for Daxton and Megan to get a heart. We sure do pray that both will receive one soon! Thanks for the prayers, it's a day to day thing and soon we shall return to our home on the other hill!

No more O's

2008-08-27T15:11:00.002-06:00

Teagan is doing well we are just trying to get him on full feeds. He has been wrenching and dry heaving and I'm not sure what is worse, but we have backed off on his feeds and are feeding him continuously. Dr. Rollins says that is how he has wanted his feed all along, for at least a month. The wrenching and even all of his reflux meds he should not need or do in a few weeks. He got off his oxygen today and is still stating in the high 80's. We should be able to go home this weekend! My R.S. made me the cutest book and I could not believe how sweet it is and how many lives Teagan has touched. They made me some extra note cards and I have been having our nurses and family leave messages and I invite anyone else too. If you leave a comment, let me know you want me to put it in his book and I will transfer it. We want him to read it when he is 15 and being naughty, so he will see how hard we have had to work to have him here and how many people love him. Thanks for your help! Remember if you choose anonymous then anyone can comment.

Back to the Floor!

2008-08-23T12:42:00.003-06:00

Teagan is back on the floor. Right as we were getting here today they were moving him to the floor. Aunt Chelsee flew in late Thursday night and got to see him for a minute and then spent all day holding him yesterday. She hasn't seen him since his first surgery. We have enjoyed catching up. We miss Daxton, Brooklyn, and Elaina already, wishing you all a speedy recovery and a trip to the floor or home real soon! Baby Jack is going home today after only a three week stay and we couldn't be happier for him. Also I don't think I have mentioned that Grace got her heart! She was born with Teagan and was unable to have the Norwood because of problems with her right side. She has been waiting for a heart since then and got it the night of our G-tube surgery. Get well soon Grace!
P.S. I think you all might have missed my post about Mason, it is below the zoo pictures, like I said my computer is crazy!

Tubes Today, Gone Tomorrow!

2008-08-21T15:16:00.002-06:00

This is yesterday before surgery with his NJ tube and NG tube. This morning my Mom helped him touch his face to feel his BARE cheeks, no more tubes!
P.S. I am very proud of our invention, Aunt Kimmy thought it would be fun to make a heart out of T's tape and with some modification I came up with this. The Me Fix tape is great because it breaths, the Tagaderm tore T's cheeks to pieces, and the heart shape works great because the point keeps it close to the nose with no room for fingers and the heart gets bigger with the cheek! I know I'm a genius, I really should paten the idea, but whats the use of not sharing with all of you other heart moms!

2008-08-21T15:10:00.002-06:00

Our tired Gator! He looks a lot like the other animals that we had just seen. Isn't the zoo disappointing, the animals are either hiding, sleeping, or no where to be seen. Since when do you go to the zoo and see NO lions!?

2008-08-21T15:09:00.000-06:00

this is our family (-1) on the train at the zoo.

2008-08-21T15:05:00.001-06:00

This is Mason with the aligators, I think he wanted to go to the zoo more for the toys that he keeps seeing the kids with at the hospital, then for the animals.

Our Trip to the Zoo w/ Our Little Monkey

2008-08-21T14:54:00.003-06:00

K this is out of order, but my computer is crazy! Mason has been doing well through all of this. My Mom took Mason to Arizona to see Kimmy and swim. He had a great time and loved being on an airplane. When he got back we took him to the zoo. On Saturday night I took Mason to Cole's party at Mason's favorite resturant, Tepinyaki, and he said Mom thanks for taking me on a date! He is so sweet and strong for loving his brother through all of this. I know Teagan choose this, but I also know that all of us even Mason agreed to support him. The siblings of these heart kids sacrifice a lot, especilly their mommas and I love him for that and hope he will understand. I know he has some anger and is acting out, but he doesn't understand where it is coming from. I thank all of you who are helping with him and for being patient with our family as we endure this. Here are some pictures of what he has been up to.

He is Fine

2008-08-21T14:20:00.004-06:00

Yes surgery went well, he got out so late and then we went to see him. He was stable not extubated but stable. We were so exhausted that we just wanted to get home and sleep in our own bed. I was zonked! This morning I called and he was extubated, but breathing fast on regular o's. My mom came up to be with him while Ryan and I and Hilary went to Christian's celebration of his life, it was beautiful and I was so touched. Hilary made it so we could be in the bed next to them and I think she is a little too excited to have us back in the PICU. It is nice to be with friends. At the funeral Kristin the NP told me she put T on high flow and he was doing great. It was funny, as more and more PICU staff came in to the funeral I asked who is with my son! We had a laugh. So far it is a good day and I feel blessed to have my baby, even if we are in the PICU.

Surgery Start

2008-08-20T17:57:00.002-06:00

They took him back at 5:00pm, they were a little behind. They say it will take about 3 hours. I will update then. We have our same anaesthesiologist from the Norwood, Chuck Pribble, so that makes me feel comfortable. It's not heart surgery, but it is still a major surgery and we pray for steady hands and clear minds. The plan is laparoscope, but that can be hard on heart babies especially ones who have had the Glenn. So they might have to open him and do it that way. We shall see.

Surgery Day

2008-08-20T10:59:00.002-06:00

After many of Teagan's great Doc and NP convinced Dr. Rollins that Teagan Needs this surgery and can not wait any longer, we are having it today @3:00. Dr. Rollins was wanting T to have a probe study to prove he has acid reflux. The test had to be done with T on no reflux meds for 72 hours. They took him off his Prevacid at 8:00 Monday night and immediately he started puking like crazy. Ryan was already planning on staying the night and boy I was glad he did, it was awful. T was so sick he could not sleep and I had to hold him all night. We were very worried about him aspirating. The next morning Dr. K and Linda said this is ridiculous and Dr. K hunted down Dr. R in the OR and said how this study was unnecessary and we all know he has severe reflux. I finally asked if we could put an NG tube down to suck out the stomach content so the throwing up would stop, he was still wrenching and turning colors, but at least it wasn't coming out his mouth to aspirate. Linda was all but ready to send us to the PICU because the risks were just too high. So Dr. Zeebrack from the PICU hunted down Dr. R and put in her two sense about how this study was not needed and was very dangerous for T to have apple juice and be off his meds. Even Toni our NP talked to Dr. R and finally at 3:00 yesterday he came by and very defensively told me we could skip the study and have the surgery today. They restarted his meds and he got a little better, but last night was even worse, luckily my mom stayed and held him all night so I could get some rest after a week of little to no sleep. He moaned and stirred all night and could not get comfy, it was so sad. With him you can't say your fine baby just rest because he might really be trying to tell us something is wrong. Dr. K and Linda think they might have just weaned him off his Adavan too fast so he got a nice dose of it and at 10:00 this morning finally started resting and is now having a nice nap. It has been a long couple of days that have all blended into one, but we got our sure sign that Teagan definately needs this surgery and we count that as a blessing. So wish us luck in the up coming hours and I will post soon.

Baby Blue Eyes

2008-08-18T00:21:00.003-06:00

We have lost another sweet-HEART, Christian. We met his parents one day in passing up here and became heart friends. Last night, Saturday, unknown to me Christian was having some struggles and returned to our Heavenly Father. I even had stopped by last night and his door was closed and the sign read dressing change so I figured I would just talk to them today. Well I guess there was some commotion in the PICU and Hollie called up to me this morning and shared the dreaded news. We never even exchanged phone numbers and it just leaves a hole in my heart, I don't know the details. Christian was 5 and was waiting for a heart since, I believe, June. He was on 2 Berlin Hearts trying to sustain him until his new heart came. He had a love for super hero's and his room was decorated in all of them, we (Hilary mostly) even figured out a way to get him an early edition of Iron Man, I'm not sure if he got a chance to watch it yet, his family was waiting for him to feel a little better so they all could watch it together. With all the Super Hero's I couldn't help but think of my Mason and his love for the Supers. I don't know how many of you have seen Iron Man or even made the connection to the heart issue, but I cried when I saw it and made the connection. These boys are Iron Men, they make something out of nothing. My link to Angel Christian tells a little more of his story, please pray for the comforter to wrap his arms around his parents and sister and brother. They have already lost one baby to this already. They were one of the couples that went to dinner with us and that will be a memory and time I will never forget. If Scott or Casey reads this I love you guys and thanks for being our friends, I'm so sorry for what you are going through, Christian was a beautiful boy, I will never forget those baby blues!

How is Teagan?

2008-08-16T20:37:00.003-06:00

Well I haven't updated on Teagan much lately because, not much has changed. We are still on the floor, still on antibiotics for his foot although we are not sure what is going on with his foot. His blood tests all come back normal, no signs of infection, but his foot is still red, tender, and swollen. ID thinks it might be a clot, but the ultrasound showed good blood flow and no clot. ID still thinks it is a surface clot, so I asked if it could travel to his heart or head and they said no it would be a different kind. They said they will just watch it and keep him on his antibiotics longer. The other reason we are still here is he did not pass his swallow study and we want to proceed with the Nissan and G-tube. He pukes a lot of thick mucus. Dr. Day explained to me most heart babies die from aspirating not heart failure after the Glenn and Fontan. That really hit me, I have to know we tried everything if Teagan's time does come. I will not leave until it is done, so here we are just waiting. Hopefully we can have it the beginning of next week. It will entail a night or so in the PICU and a few more days on the floor learning how to it works and to make sure he can eat. He will be able to have bottles and our biggest goal will be to stop an oral aversion by using his binky and trying bottles. Dr. Harris explained it well, " We eat from the top of our heads down: Our mind says I'm hungry, our eyes say that looks good, our nose says that smells good, we take it by mouth, down the throat, to the belly and out the bum." The G-tube will skip most of those steps and could cause some issues for the future. So we will try to avoid this, but we know after many prayers and consultations that it is best for Teagan, we have to know we did all we could do, and the rest in in Gods hands. We know he has a plan for Teagan and although we don't know what it is, we know that it is best. All along all we have wanted is what's best for Teagan, life is too short for what if's. ID was concerned that T might have a syndrome called Di-George and tested for it, we didn't want to alarm all of you because to us it would not matter if he did or did not it would just be one more thing. Anyway the test did come back negative and now we just have to figure out why he has low calcium and low white blood cells, but the docs are not too concerned so we will just be alert. Please pray that we can figure out what is going on with his foot and that we can have this surgery soon, thanks for all the prayers and support.

Welcome to Holland!

2008-08-15T12:39:00.002-06:00

I got this poem at one of our parent meetings and it is the greatest explanation of how I feel about my "new" life:
When you are going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans...The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say, "What do you mean Holland? I signed up for Italy! I'm suppose to be in Italy. All my life I've dreamed of going to Italy." But there has been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you bring to notice that Holland has windmills, Holland has tulips and Holland even has Rembrandt's. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special , lovely things about Holland.
My life will never be the same, the plans I made have changed, I feel sad when people talk about "Italy", but the changes have made me a better and stronger person and I am thankful for that. God has blessed me with Teagan, I always knew this was coming, not this exact way, but I always I knew I was going to have a child with disabilities and I thank the Lord for preparing me. May the Lord bless you all and may you understand my situation and feelings better is my prayer.

A Night Out!

2008-08-14T17:19:00.003-06:00

Last night, Wednesday, a bunch of us families that have met in the PICU, went to a nice dinner at mine and Ryan's favorite restaurant, Canella's. Ryan treated everyone and when they offered to pay we just told them to pay it forward. We wish we could do more, we told everyone we are not talking about sad stuff, just happy stuff tonight. I think everyone had a great time laughing and chatting and we all felt good leaving our kiddos with very skilled, very expensive babysitters. We said if we told the waitress where we were from she would probably cry, "My kid only has half a heart", "My kid had a portion of her brain removed", "My 2 month old needs a heart", "My son has been waiting for a heart all summer", "My daughter is going home, because there are no more surgical options", "My daughter has 3 different clotting disorders and the docs are not giving us much hope". Yet here we are laughing and caring on, we understand each other, we don't like our situations, but we accept them and without these trials we would have never met each other and made these lasting friendships. I am so grateful to IHH, and PCMC for the family we have made. I want to thank Carolyn for letting Hope's heart live on through these kids and for comforting the sweethearts in their time of need. It was a much needed night out and fun with friends who know and understand what we are going through without even talking about it! I love you guys, thanks for your examples of enduring to the end!
P.S. G-ma Ann, what is Alex's care page?

2008-08-10T22:49:00.002-06:00

I know everyone wants to see picture, this is the only way I can get them to work, one at a time. They are a little out of order, sorry.

This is Teagan last Friday on C-PAP, isn't he cute in his little hat.

2008-08-10T22:47:00.000-06:00

Nurse Megan Bland and Mommy changing PICC line.

2008-08-10T22:45:00.000-06:00

Happy birthday to Teagan. Let them eat cake!

2008-08-10T22:43:00.000-06:00

Happy birthday to me...

Pictures

2008-08-10T22:35:00.000-06:00

Teag And Daddy watching the olympics!

Pictures

2008-08-10T22:14:00.001-06:00

This is Teagan, day three on the floor, happy as a clam, even with all of his wires!

Happy 5 Month B-day!

2008-08-10T21:25:00.002-06:00

Well we made it, Five months and counting! We are grateful for every day and celebrate the time we spend together. Big G brought up balloons and a cake for Teagan and we had all of our PCMC friends in our room to sing and eat cake! He smiled so big the whole time and everyone was so happy to see him doing so good. Church was good as usually, especially the musical number. Teagan is doing well on the floor, basically we are just waiting on the antibiotics to do their job and clear up the staff infection. He still gets CPT (his beatings) and some suctioning, but mostly he can clear himself now. They are weaning him off of his narcotics and he is tolerating that so far. So I am getting use to his new meds. The big thing is he is still eating NJ and that means continuous feeds 24/7, due to him not passing his swallow study. I asked if we could have another study before we leave, and although they don't feel he will pass again, they say we can try. This is our prayer that he can get back to bottles and he can't try unless he passes this test so please pray that he can pass his up coming swallow study so we can go home NG and try bottles.
PS. I'm just throwing this out to my blogger family I want to do a tree for the Festival of Trees this year and have mentioned it to my RS pres. and friend Pam, but I was just wondering if anyone else had ideas or could help. I want it to be Incredibles (Disney) so keep your eyes open for cute stuff. Thanks for your help!

Day 2 on the floor

2008-08-08T11:37:00.002-06:00

This is Teagan today after I gave him a bath and got him dressed! He loved it and now he is napping in Big G's arms.

We are on the FLOOR!

2008-08-07T20:06:00.003-06:00

Teagan has made a 180 turn. He decided over night he would like to go to the floor, so he breathed easy, kept his lungs clear and only needs 1/2 liter of o's. We have had a bit of puking today, but I think it is from clearing his own lungs and not knowing what to do with the spit. He had a test for acid reflux yesterday and you will not believe it, he passed. Doesn't make a lot of sense to us, but they say the only reason anything comes up is because of the NJ tube not letting that sphincter close. So we will try a swallow study in a few weeks and if he passes that we can try bottles. It was bitter sweet leaving the PICU today, it was good because it means T is getting stronger, but it was hard to leave that family behind especially our sweet-Hearts Daxton, Elania, Brooklyn, Kairi, ect. and to leave our favorite nurses and docs and NP Kristen. We miss them, but they have left an impact on our hearts forever and hopefully the kids miracles are just around the corner and we will see our loving medical family in a year 1/2 or more! Now we get to be with Megan and Ashlee and Jes and everyone else we hope to see again up here on the floor. We are also across from Alexander our friend from the Norwood who got his heart and a new friend we have already met Cashe.

This Little Piggy...

2008-08-05T21:00:00.002-06:00

This little piggy is very, very red. Well it has taken all day, but we finally know that Teagan's foot and now his hand have staff infection. We worried for a while that it was a major blood clot that was throwing. But infectious disease thinks it is staff and after a major ECHO, that Teag was excellent for might I add, we agree. They are giving him antibiotics for them and will keep a close eye on them. He also tested + for seadiff (spelling). They don't feel it is bad enough to treat and say most babies under 6 months have it anyway. He did not pass his swallow study, he aspirated, so we will try again when he gets his voice back. I don't know if I mentioned, but they have been worried about his vocal cords because his cry is so soft, but yesterday they did a scope and they are not paralyzed just weak and should get better with time. So more tests tomorrow, but today was his best breathing day, still a lot of crap, but better.

I WISH I COULD SAY....

2008-08-05T10:53:00.002-06:00

I wish I could say we are on the floor and all is well, but that is just not the case. I haven't posted for so long because I think a lot of you look to our blog for inspiration, but things just haven't been that great lately and it's hard to post. Teagan's lung just haven't been getting better, they are still full of junk and he breaths fast. On Saturday it was my birthday and my family tried to make it nice, we ate at the Point on Friday and then Sat. morning Scott took me to get a massage down at Foothill, my mom brought up lunch and Teagan had a ok day; then at 6:30 am Sunday morning we got the first of three calls that Teagan needed more support with his breathing, they put him on C-pap. Then they called again for permission to do a pic line. When me and Ryan got here on Sunday it was a sad sight, we both just had to cry, the C-pap was not the cute little beanie he had last time, it was full on Top Gun mask and head gear, I could barely see his eyes, he just looked miserable. Since then we have been running every test possible and so far none have come back positive. He keeps getting fevers and last night before we left his right foot got all red and hard and hot, not good! It has now been TWO weeks in the PICU for a 7-10 day recovery. We will keep running tests to figure things out, but right now we are discouraged and I am so scared, It just makes me cry. Lungs are the end of the road, if it was his heart we could try for a transplant, but his heart is good or so they say, but his lungs look the same after all they do. So many of our sweet-HEARTS have passed away because of lungs and it scares me, they feel like all he needs is time so we will give him that. Please pray and send your good wishes, that's about all you and I can do.

Day EIGHT in the PICU

2008-07-30T16:05:00.001-06:00

Well it has been a week and right now we are extubated again! Me and Mason got here today and they asked if I was ok to extubate him. I said it was fine and so far he is doing great he even wants his binky again. I got to hold him in the rocking chair for a while and he really liked that. He is just resting and breathing easy! The last few days have just been the waiting game, trying to get his lungs strong enough to extubated, lots of beatings and special meds to break that crap up. We have really enjoined our nurses, we have a lot of connections with a bunch of them. Visitors are welcome, we just can't have young children back by Teagan. If you do come to visit we are usually back with Teag because the waiting room has been taken over by a small Indian tribe. So just come and get us, I try to be here by 10am and stay till 8:30pm or so. Thanks for checking in on us.
P.S. Our little neighbor girl here in the PICU was going in for brain surgery and they asked Ryan to give her a blessing because they wanted someone who wasn't attached. Ryan gave her blessing and came back and told me she is going to be ok, that was the feeling he got from Heavenly Father. I am so grateful for the priesthood and the peace that it brings.

A Fallen Angel

2008-07-27T14:39:00.002-06:00

Our little angel friend Isaac Brimley lost his fight with HLHS last night. We met his family while we were here for our Norwood. His family has fought hard to get their little guy home and now he has gone home just not the home they were hoping for. Thank you Brimley's for sharing your light with us.
Teagan's lungs continue to have crap in them. They are struggling to keep them clear. They say it will just take time and time we have as long as Teagan needs we will wait patiently. It's all up to him, it makes me teary eyed to say that but it is. We will keep fighting as long as he has fight in him and the Lord will allow. We will wait for his lungs to clear and then try spon. trials and then if he does well with those he will get the breathing tube out. So until then we wait. We did go to church today and it was wonderful as usually. Mason is up here and he loves his little brother, he told my Mom "it hurts me to see him like that." May we all find comfort and peace this sabbath day!

Look Around

2008-07-26T21:27:00.002-06:00

As I sit in the PCMC PICU I look around and once again feel grateful for my own trials. I see a sweet 20 year old girl spend day and night next to her 21 year old boyfriend/fiance who is in critical condition with lung cancer awaiting the day when they can be married. I see a very young single mother who is from Alaska who just gave birth to a baby diagnosed with HLHS and has just had his first surgery who's support system (her parents) have to fly back to Alaska tomorrow. A family who's daughter has HLHS and their nephew passed away from HLHS. A family fight to get their son well enough to get home to spend his remaining days at home while fighting with HLHS. A little boy who is critical after having been hit with a pipe bomb. A boy surviving on the Berlin Heart while he waits for his transplant. A baby girls family watching her endure her first open heart surgery after being diagnosed with a CHD that has NO survivors. A girl who thought she was just getting a hip replacement and now has thyroid cancer. A baby girl with a serious CHD that after being told it is time to let her go is preparing to go home to be with her family. A baby boy who needs a heart and just got taken off the list because of a infection. And after hearing of three abused children who only one is still here barely hanging on. Also many more rooms and floors of children and grieving families I don't even know. Lets just say I'm very thankful for a pretty restful day and no big events. Teagan has just rested most of the day with an occasional eye open to see his loving family waiting patiently by his bed side for when he can be in our arms once again. His lung has re-inflated and they beat his chest every six hours to get the crap out (he is sounding much better). They say maybe tom. or Mon. to try extubating again, but like they said it is up to him. We all understand we live on T-Time and when he is ready we will know.

Spoke too Soon!

2008-07-25T22:32:00.002-06:00

Friday went as Fridays do for us in the PICU, (from his first surgery Fridays were always our worst days). Yes the tube was out then we were on regular O2 then we went to high flow then we went to C-pap. After a few more hours we all realized it was time to reintubate. I played doctor and listen to his lungs and watched his retractions and although his bloodgases were not too bad I told the doctor I could not hear anything on the left side so she listened and agreed with me (after asking if I was in the medical profession) that it was time. Teagan's left lung collapsed and we are hoping the vent will help open it back up. They asked if I wanted to stay in the room for the reintubation and I said yes because I'm trying to be really strong for him. Well they started to drug him for it and he stopped breathing...YES I said stopped! So they had to bag him and I'm just standing there while all these doctors gather round watching my son with white faces and look just as worried as I feel, no one tells me it is going to be ok and I don't want to bug them for fear they might turn away from Teagan. So I wait as long as I could and my Mom who is there to comfort me after I sent Kim out says just ask so I ask and the nurse says he is ok they plan on them to stop breathing just not that soon, meanwhile they tried three times to place the tube and finally got it in. Ryan called during all this and I told him what was happening and he was on his way up. We got things all calmed down and gave Teagan a extra blessing that his lungs will be strong. I hope we can all get rest after our long, hard day. I had to just tell myself that he is not there, his spirit is somewhere happy, it's just his body having to endure all this. It is so hard to watch them "beat the crap out of him" as they call it trying to get the crap out of his lungs by beating his chest. But I have to believe it is for the best. He did open his eyes tonight when all was said and done and I was able to look in his eyes and tell him everything was going to be ok. He is so beautiful, someone said he is too pretty to be a boy, but he is just my beautiful baby boy half heart and all. May our Father in Heaven keep him comfortable this night is my prayer. Good Night sweet angel baby, peace be the journey!

NO Tube!

2008-07-25T11:06:00.003-06:00

When I got here this morning with my Mom they had just extubated Teagan. He did not like it very much and it took an hour and a few extra drugs to get him calm. Yesterday was pretty quite in our bed. They did start to feed him and we are trying new formula and less calories to see if he can bottle feed, not that that matters right now since he is being feed NJ (bypassing the stomach) and only gets 5ml every hour. So far no cylo, which I asked Linda to leave a chest tube in for that reason (and it was still draining some). He also got a lot of lines taken out yesterday, the one in his neck, the big chest tube, the tube sucking out his stomach, his cath.(maybe that was the day before), RA line and I think that is it! He is on high flow o2 right now and we are just praying his lungs can handle it and open up real big, we pray for deep, calm breaths. Sorry it's not real exciting, but Teagan is older this time and needs more attention from me so I don't have a lot of time to post. The Internet here is slow so pictures are hard to get up but I will try. Thanks for all of your support and prayers.
P.S. I did get to hold him to help calm him down, but with all his IV I think it hurt him worse.

2008-07-23T21:49:00.009-06:00

All of Teagan's meds keeping him stabilized.

Teagan yesterday after surgery.

Teagan this morning, a little less puffy and a little pinker cheeks.

Mason seeing Teagan today and giving him a kiss!

Daddy and his boys!

Today was pretty much the same just trying to keep him calm and comfortable. I know how to sooth Teggie, but that requires picking him up... so it is hard to not be able to give him what he wants. We just have to sing his favorite songs, and rub his swollen head and hands and body. I noticed bloody urine coming from his cath. today, but they think he is ok and will just watch it. They heard a gallop in his heart, but said it is just from all the fluid. They tried to get him extubeated today by trying some spontaneous trial and he did ok, but want him to rest and try again tomorrow. Slow day, but that is how things go around here. Teagan is just fighting to come back to us and get back to his happy, playful, cuddly self.

2008-07-23T21:43:00.002-06:00

Mason and his new friends playing N64!

G-ma Dee, Aunt Brookie, Aunt Kimmy, and Mason waiting to see Teagan after surgery.

Uncle Mike and Uncle Scott waiting to see Teagan.

Mommy and Mason wearing their Incredible's shirt to cheer on the Dash-Man!

2008-07-23T18:29:00.000-06:00

This is how we greeted him at 4:30 yesterday.

Day 1 in the PICU

2008-07-23T11:35:00.002-06:00

Well we made it through the night and all is well. We got to see him at about 4:30 yesterday and spent a few hours by his bed. It was a lot of getting him comfortable on his meds and stabilizing his stats. He did not want to stay asleep and that was really hard to see him wake up and cry with no sound. We got here this morning and Teagan had a ok night still needed lots of Fentonal to keep him asleep. Today the goal is to get him off the vent and breathing on his own. So they have to let him wake up a little bit and he is not happy. So we pray for peace and rest and strong lungs. (his lungs have some mucus in them) Also he threw-up early this morning (blood) So they have a tube down to his stomach to suck it all out and they are starting his tummy meds. Gail has been our nurse yesterday and today and our night nurse was Heidi, all ones we have had before and love (Gail was the first to let me hold him last time). We have his crib all decorated with his Incredible stuff and he has his music and favorite blanket. I am so glad to have the surgery done. Dr. K feels really good about it. I asked what happens if his aorta does that again and he said very straight forward "it won't". So I have to trust him. Life up here is just as we left it, grateful our own trails as learn of other peoples. Teagan is a fighter and I know he can pull through again. Last night as I left I told him to go to a happy place and let GG rock him and sing to him, just promise to come back.
P.S. Next post will be pictures so be forewarned, they are not our happy little guy we are use to.

update

2008-07-22T14:21:00.002-06:00

Linda came out and let us know he is off by-pass and we should see Dr.K by 3:30 and Teagan about an hour after that.

Update

2008-07-22T13:48:00.002-06:00

Linda came in, they are finishing up the Glenn. Then they will try to get him off the heart and lung machine. Then we should see Dr. K in about an hour, they are expecting extra bleeding so it might take some time. Coke- we have all enjoyed a grilled cheese and a beverage. Mason is quite content playing N64 and watching a movie, actually they just came and got him and Emily to go paint wood toys for other kids. Ryan is napping and I am coloring in Mason's new coloring book. Mom and aunts went for a walk, Stacey is reading and Allana is hot.

Update

2008-07-22T12:30:00.003-06:00

Linda called, they are still working on his aortic arch and he is tolerating it well. Haven't even started the Glenn. She said she would call again in an hour.

Update

2008-07-22T11:05:00.002-06:00

Linda NP has come by twice. First to tell us it has taken over an hour to get through the scar tissue and now at 11 he is officially on the heart and lung machine and now will be starting the repair. Dr. K told us yesterday the Glenn should be pretty simple (at least to him), but he is concerned with his aorta. It will take the most time and work. He weighed over 15lbs. today and his blood draw came back a little high in potassium...we better lay off the bananas;) We have already made friends with the other heart family (Dr. Hawkins), a little girl with HRHS, 2.5 years old getting her Fontan.

Today is the Day

2008-07-22T07:54:00.005-06:00

This was Teagan a few weeks ago, but I wanted everyone to see his happy smile before all the upcoming pictures tonight.
So I just handed over my baby to a very loving and kind Dr. Mullroy. My baby is four months old and we are so bonded at this point. As each day goes by we form a stronger connection. Last time was hard, this time is harder and I can't even imagine two years from now. I know he needs this surgery and it will help him...but these next five+ hours and coming days are going to be hard. Our prayers are directed towards Dr. Koreatus and his mighty team at this time. They said it will take about an hour just to get him put out and then they will update us and I will update you. THANKS FOR ALL OF YOUR SUPPORT.

Once Again...

2008-07-19T23:55:00.002-06:00

Once again we are asking all of our blogger family to keep Teagan and his medical staff in your prayers these next few days as we prepare and under go Teagan's next surgery. We will be fasting Sunday and invite all of you to join us. We have a lot of faith in our Heavenly Father's plan for our son and we ask for his blessings to be poured out upon him these next few weeks. Thanks for your continued support and love, may you be blessed for your support. We will try to update a lot and let everyone know how things are going.

It's been a Long Time

2008-07-04T20:46:00.003-06:00

Well my finger is starting to be usable again so I am back to my blogging world. Lots has been happening around here. Teagan has had a hard time keeping his stats up and jumps all over with his oxygen, in one day he could need 2.5 liters and then go all the way down to 1/16, it's crazy... but the doctors say it is fine as long as we keep him in his range. Dr. Koretus' Secretary called yesterday and they scheduled his Glenn for July 22, they feel his aorta will be healed by then and they can go a head. Teagan weighs 14lbs. and 3oz. Dr. Harris says we are so blessed that way, he claims these kids should be failure to thrive and our Teagan is thriving to fail by outgrowing his sano so soon. Teagan gets really bad tummy aches... I can't decide if the extra oxygen causes more air in his belly or if the tummy aches causes him to need more oxygen. Sometime he is almost inconsolable and it scares me because he will drop into the 50's when this happens, when Mason would cry I knew he would be OK eventually, but with Teagan I don't know what will happen. We have had some pretty emotional weeks since his cath. I feel like we reached our peak a few weeks back and now we are fall down a fast hill and I pray we can catch him before we hit bottom. I have a lot of faith in our medical staff, I think they were worried that I was pretty upset after they canceled on us on our way up there... but I know it was an answer to prayers that Dr. K caught that before he got in there ans said whoops!
We have lost one of our sweet-hearts, Charlie. We met him while we were on the third floor, me and his mom became friends and even got mistaken for each other. He flew to Boston to meet his dying grandma a few weeks ago and then took his last flight home to be with her until his parents can be with him again. I am thankful for the plan of salvation, that I know no matter what we can be together again and that this earthly existence is a very short time in the eternal prospective . May the Comforter comfort them at this time is my prayer.
Also Eden another sweet-heart returned to our Father in Heaven, her Dad's final words are very comforting to me so if you can check out her blog. We don't know how long our sweet-hearts will be here, but I know they each will fulfill their mission no matter how long that might be. Our job is to love and take care of them as long as we are allowed.

False Alarm

2008-06-25T15:59:00.002-06:00

We were on our way to do preopp and got a call that Dr. K just reviewed his cath and Teagan can not have surgery tom. During his cath. they tried to balloon his aorta and now those vessels are torn and need to heal for 4 to 6 weeks. We feel it is a blessing that he caught this before they got in there tom. Thanks for your thoughts and hopefully we can hang in there that long. We will try to keep you updated. Heart Hugs!

Here we go

2008-06-25T14:02:00.003-06:00

Greetings from Indian Trail, North Carolina. This is Chelsee Brytten's younger sister. Brytten called me two minutes ago and ask that I do a post for her, because there is no rest for the weary at casa de Pettit. They have received word from Dr. K that Teagan will be under going his next surgery, the Glenn, tomorrow morning. When I asked her what else she would have me write all she said was, "Ask for prayers." So I am asking that you not only pray for our sweet "heart," but that you might remember to ask our Father in Heaven to guide the hands of Teag's surgeons, also that the Holy Ghost might fill Brytten and Ryan's empty arms while Teagan is in surgery. Please pray that tender mercies might once again be manifested unto this sweet family. Might I also ask that you pray that acts of service will not cease to exist in the PCMC lobby. Some of the most heart changing moments for myself took place in that waiting room, as I saw "heart mothers" embrace and weeping fathers wrap their arms around one another. Lastly if it is not too much to ask, during the long hours while Teagan is under going the Glenn, might we all be a little kinder, smile a little brighter, and turn our hearts toward our elder brother, Jesus Christ. Thank you for your love, support, and prayers. Let's keep it up.

Tummy Bug?

2008-06-21T12:48:00.002-06:00

We think he got a tummy bug so after lots of poop and some extra puking he is doing a little better. He is down to one liter of oxygen which is more than we would like. Have any of you had this many problems after a cath? We were way not prepared for this, we thought it was going to be a simple thing and it turned in to a very big deal. They found that his shunt was pinched a little bit and felt good about fixing it, but he has only done worse. They felt like he was good enough to come home yesterday, but I haven't seen him this bad since they tried to close his chest the first time, so we are a little upset and are waiting for Dr. Day to get back in town to discuss it all.

Asking for Prayers

2008-06-20T22:17:00.002-06:00

Teagan is home and we are struggling. I don't have a lot of time, but please pray. We are trying to keep him stable, but he is requiring 2 liters of oxygen. Sorry so short, I'll try to update later.

I'm so glad when Daddy comes Home....

2008-06-17T16:38:00.008-06:00

(Teagan's shirt says my dada is #1)
Fathers Day was a special day. We started it off by having two of Ryan's brothers over for breakfast, it was fun and delicious. My personal shopper, Megan, got Ryan some cologne from Victoria's Secret. It was the same cologne I bought him for our wedding day. Fathers Day is also the anniversary from when we got engaged, six years ago. We haven't been able to do much shopping, so our gifts to our fathers was to go visit them with the boys. They both really enjoyed our visit. We had a good time getting out and showing off Teagan, but it got to be too much for T. He had a few blue spells and he was feeling muggy from the weather. So it was time to get home, as soon as we got home he settled right down and his sat. level was just fine. Ryan and Mason feed Teagan his bottle, it was a fun day!

On a side note our good friends, the Akers had their baby on Thursday. But by early Friday morning Cooper was life flighted to Primary's with a heart problem. It is all going to be ok, but for a moment they knew how we felt and Ryan went up and saw the baby. Jen, the mom, is the one having problems with blood loss. So needless to say their family could use your prayers.

(Mason took these pictures)The reason this blog is short and scatter brained is because yesterday while I was dusting, I dropped a large floor vase and tried to catch it and sliced the side of my left index finger almost all the way off. Me and Ryan spent 5 hours in the E.R.,and I had to have 13 stitches. Now I am home and very helpless, I'm in a lot of pain and nauseous from the drugs. They still aren't sure if my skin will make it, we will find out if I need a skin graft tomorrow. So as if my mom and others weren't helping enough, they've had to pitch in even more. I can't even hold Teagan. So once again our family could use your prayers. That's about all I can write with one hand. We will try to update on Thurs. after the cath.

No Chylo!

2008-06-12T18:22:00.004-06:00

Yea, no chylo! We had our x-ray today and we got the all clear. G.I. wasn't much help,they want us to try and feed him every three hours 90mls and keep working on the bottle. They were really impressed by him, they said he has won the record for most weight gained, he weighed 13lbs. 12.6oz. (58%) and 25in. long (90%). We are so proud of him even though it means he has most likely out grown his shunt. We have a cath. next Thurs. to make sure. So until then we will stay on fortified breast milk and oxygen. We visited some of our heart friends in the PICU, Parker who just underwent a heart transplant for HLHS, Mason who is recovering from the Glenn, and Isaac who has HLHS and all of them could use your prayers. These kids are so special, I noticed on Mason's crib there was a sign that read, "when I count my blessings I count you twice." It really hit me, these kids volunteered for this and we should thank our Heavenly Father everyday for the blessings they bring to our lives. Today went well, we got good news so lets just pray we can stay this way until surgery. At this point I just want to get this surgery behind us and work on living! Our Mason spent the morning with Allana and Kynzlee, they went to the park and Donald's, he had so much fun thanks guys. We are so thankful for family who can help us in every way.

I Need Oxygen to Breath!

2008-06-11T13:22:00.004-06:00

It's true we are on oxygen full time now, 1/2 liter all day and all night. I talked to Dr.Day today and he is concerned. The reason for his dropping oxygen is one of three things: out grown his shunt and ready for his next surgery, a pinch in his shunt which they would put a stint in, or the chylo is back and restricting his breathing which in that case they would have to put in a chest tube and drain it. We are hoping he has just out grown his shunt and needs his surgery sooner. The other two would require small surgeries which we just don't want him to have to go through. So I'm asking as you read this to stop and say a little prayer for our big guy, we could sure use them. We will have an x-ray when we go to G.I. tomorrow, which will confirm or eliminate the chylo. The other two will require a cath. sometime in the next week, we will wait to hear back from Dr. Day when that will be. Thanks for the extra prayers and we will try to keep you all updated.
P.S. anyone can leave a comment now, under anonymous.

3 Months Old

2008-06-10T13:41:00.004-06:00

Today our big guy is three months old. We are definitely outgrowing our shunt. Tuesday night I was a little worried about his breathing before Amber got here so I checked his o2 saturation level and he was 69-68, too low. So I changed feet and he was his usual 74. So I just asked Amber to check him through out the night. When I got up Wednesday morning she was standing rocking him and told me they had a rough night and she was worried he might be sick with an ear infection, but that his sats had not dropped below 70 all night so at least it was not that.I asked her to hold him while I drew up his meds and got her money to let her go home, but she was more worried about Teagan then leaving and getting her money, which I appreciated. She is doing a really good job, I never even hear him fuss or anything. So I sucked out his nose because he definitely sounded congested and then he sounded a lot better so she left and I said I would just watch him. He settled right down and so I think his feeding tube was just bugging him, after he pulled it out twice on Sunday, I'm sure his nose was a little irritated. He hasn't pulled on his ear, so I think he was just trying to pull on his tube. I was still concerned about his saturation levels so I checked them and they were low again, upper 60's. I called Dr. Day and his nurse called me back and said it was time for oxygen, we feel blessed that we already had oxygen here because of a paranoid nurse. We checked his levels again and they were back up in the 70's, so we kept checking his levels every hour, and for most of the day they stayed in the 70's. I was really proud of my Mom she stayed calm all day, at least on the outside, while I was freaking out for most of the day. Stacey came last night and I was checking him and by 10:50 he was low again, so we spent the night on oxygen, we started on .5 of a liter and had to go up to .75, then by 6:30 this morning he was in the 90's and I weened him back off, so right now he is in the 70's, no oxygen. Dr. Day's nurse called again and she wants me to keep him in the 70's, not to worry about 80's and definitely put him on oxygen if he drops to the 60's. She was really nice and just reassured me that this was a sign that it is the right time for his Glenn. We also heard from Cath. Lab and they scheduled his cath. for July 10th, his four month b-day. Which means that his surgery will follow within the next couple of days of that. It looks like we will be on oxygen, at least at night, until then. On a happier note, feeds are going better. He is eating 60mls every other hour and he is puking a lot less and it is never chunky. He takes a bottle well, especially from Big G, she gets him to take 30mls every time, the rest we put in the tube. We see G.I. on Thurs., so hopefully they will have some more help. Sorry this is so detailed, but I want to look back and know all the details. We pray that Teagan's heart will stay strong and get us to July 10th, keep fighting big guy and Happy Three month B-Day!
P.S. My Mom got Teagan to give his first giggle on Monday, it was so cute, but evertime I tried to film it he stopped.
Pop tries to give Teagan a bottle.
Mason keeping an eye on Teagan.

Peaceful Week

2008-06-07T20:38:00.003-06:00

This is a picture of Big G holding Teagan, right after she made us my favorite dinner Sunday, after our family fast.
This week has been pretty peaceful. After our good report at the cardio. appt. on Monday it has been "our" normal life here at home. Monday when we got home Teagan was a little out of it from the drugs so we tried to keep him as calm and relaxed as we could, my mom came over so I could nap for a minute after our early morning. We had a few responses to our night nanny ad so I did three interviews that night and guess what we picked one. Her name is Amber and she has done two nights already and will be here tonight and tomorrow night as well. She is really great, I can tell she just loves Teagan already. She is really loving to him and after I gave her a very detailed write-up on how to medically and feeding wise take care of him, she caught on to that too. I hope she sticks around because it is really helping us, especially since Ryan has been sick since last Sunday and hasn't been able to come within 10 feet of Teagan and hasn't been sleeping in our bed. Needless to say we really appreciate her and the care she gives to Teags. And talk about small world, Amber and I went to school together, she is a year older, but we were both in choir. My Mom also figured out Amber's Mom is in her stake and her and her primary presidency sent us a care basket full of goodies while we were in the hospital, talk about answering our prayers. Tues. Cortney graduated and we are so proud of her. The girl who only got one A-, never sluffed and not one tardy, go Jo! So Stacey watched Teagan while we went to dinner to celebrate. On Wednesday G-ma Dee had the night and Grandpa Mason came to help her, he did such a great job and even let her catch a couple of Zzz. My Mom said it was the nicest thing her Dad has ever done for her. In the morning Grandpa made all of us omelets, they were delicious, thanks Grandpa! Last night we went to dinner with Eica & Allana and Levi & Megan to celebrate Allana's b-day, it was fun. Stacey and Em watched the boys. Today me and Mason went to Kung Fu Panda and The Mayan for Sammie's b-day, Teagan stayed home with G-ma Dee and her friend Joye came to help her. We are trying to get use to our new normal and be able to do as many normal things as we possibly can, but it's hard to do anything without Teagan, I look around at all the baby car seats or hear a baby cry out in the movie and all I can think is I wish my baby was hear to cry out. I have a lot of family and friends who are pregnant right now and to be perfectly honest it is really hard for me. Don't get me wrong I wish them all well, I pray that they each have a healthy baby and never have to go through this, but it is just hard to know that they are going to have that perfect healthy baby and I have to prepare for my little guy to have his chest cut open AGAIN. I wouldn't trade Teagan for anyone, but oh how I wish he were healthy. I enjoyed my pregnancy, a part of me really wanted a girl and I couldn't wait for my ultrasound to find out, so much in fact I didn't wait and I went to Fetal Studio. Next time, IF there is a next time and that's a big IF, it won't matter if it's a boy or a girl or even a monkey as long as we can get some good looks at the heart and make sure all it's parts are there. From now on when someone says we don't care what it is so long as it's healthy, I will totally agree. You are probably reading this right now saying this will never happen to me, and I would have said the same thing even three months ago, but how wrong was I... it can and it might, I just want you to know I will be here for you... just like the blogs before me are here for me. It's nice to know you are not alone in this and you read the blogs and tell yourself, if they can do that, then I can definitely do this. Life isn't fair, but we are not alone and when it gets too hard to handle, I believe more now than ever before, He truly does carry you. May our Heavenly Father's blessings pour out upon you and your family is my prayer. Thanks again, keep the faith!

Our Prayers are being Anwsered

2008-06-02T18:07:00.005-06:00

SORRY, SORRY, SORRY! I have been trying to post this for days, so if it doesn't make sense you will know why. Today went really well, Teagan did awesome. It was a very early morning. Teagan had a very peaceful night with G-ma Dee, she said it was her best night ever with him. He had his last feed at 1am, then at 3 he has plain breast milk, and finished eating at 5-6am pedilyte. I was worried he would be very unhappy come 7 when it would be time to eat again, but he slept through it all. We checked in at a little before 7 and had a x-ray, we didn't get the results right then, but we found out later that the cylo has not returned. We will have another x-ray in a week to make sure it still has not come back. After x-ray he got weighed (13lbs. and 25.5in. long). Then the IV team came to draw blood and put in an IV for his sedation medicine. I wished them luck, but they told me that they had no problem getting blood, that was a miracle. We took him into the echo room and I held him until he feel asleep. He was a little restless and got the hiccups pretty bad as a side effect of the sedative. When he laid down we left him. We went and visited some of our favorite nurses, Ashlee and Megan and we even ran into Pam Anderson. We also got to visit Gacie for awhile, sounds like she will be going home soon, send some prayers their way, I think going home would do miracles for her. By then it was time to get back to Teagan, he was still out so we sat by his bed and I rubbed his head and as I smelt the hospital blankets it was all to familiar.
He came out of it pretty fast and we tried some pedialyte after he took that they wanted to see him try half a feed, he tolerated them well, so after some monitoring we talked with Dr. Day. He went over the echo and told us his heart function was even better than right after his surgery. The clot was still there, but smaller and not as floppy, so the shots are working and we will continue to give them. The big surprise was they want to do his Glenn later this month to the first of July, we were expecting Aug. or Sept. at the earliest. We thought the better he was the longer we could wait, but Dr. Day sees that he is out growing his shunt and would like to have the surgery while he is strong and healthy, they usually are waiting for these kids to gain weight, but as you can tell Teagan is doing plenty of that. After we talked with Dr. Day we went back upstairs to let Teagan see his girlfriend, Gracie and then we headed home.
So now we just have to watch for the cylo to return, hoping it doesn't and check his sat. level everyday to make sure it doesn't get too low. So our prayers, blessings, and fasting were all answered and we thank our Heavenly Father for that. Sorry it took so long, but no news is good news, usually!

Family Fast

2008-05-31T11:27:00.004-06:00

We are going to have a fast on Sunday or Monday, whatever is easier for you. Teagan has a very big cardio. appt on Monday morning, they will be sedating him for his echo. During this they will check his heart and get a pretty good idea of when his next surgery will be. They also will check his clot and if it is gone we can stop the shots. Then they will do an x-ray and make sure the cylo has not returned now that we have started breast milk. He can not eat after 4am, so our little guy will be pretty hungry. And then we will spend some time in the PICU for evaluation after the sedation. Please fast and pray with us that Teagan can enduring it all well and that the doctors will know what's best for him as we prepare for his next surgery, please pray that his clot will be gone or at least in the same place and the same size and also we could use all the prayers for his feeding issues to get some resolve. Thanks for your help, we believe in the power of prayer and fasting as we have seen it help us before. Teagan will also have a priesthood blessing by his Father and Grandpas on Sunday night, with all of these things combined I know Monday will be a success and we will get some answers to our questions.