The Maxwell House

Holiday re-cap!

2012-01-10T17:28:00.000-08:00

We're falling back into our school routine now that the holidays are over and I thought I'd do a little catching up!

Back in October the kids and I volunteered at our local park for "Make a Difference Day." A new playground was built and they needed help cleaning up some of the hiking trails around the park. The kids were so excited to do this and it was fun doing some volunteer work as a family! I know we probably didn't contribute much with our little rakes, but I love the idea of getting them excited about helping others while they're young. Halloween was super fun and as always the kids wanted nothing to do with dressing up in coordinating costumes. I thought it would have been so cute to do the toy story characters or something else that goes together, but Gav and Teag had already decided what they wanted to be. We ended up with a Tiger, Strawberry Shortcake and Batman! Batman was Bode's backup costume after this awesome Lion outfit didn't work out. This is the only picture I have of him that he's not crying in. He hated that thing- especially the heavy head part! The kids and I spent Thanksgiving down in Las Vegas with my Dad, Stepmom and family. I can only find a few pictures from our trip but it was so great! We played outside in the warm weather, rode horses, ate way too much food and spent some fun time with family. On one of our last nights, we all went out to a really fun restaurant where they cook your food right in front of you. The kids were mesmerized! Here they are with my stepbrother, their 'uncle' Austin- so sweet! Homeschooling is going really well now that we have a semester under our belt. It is definitely more of a challenge than I thought, but also more rewarding than expected! We're still up in the air as to what we'll do next year (home school vs. public) but right now I'm enjoying our time together. These two are pretty good buddies most of the time, and Teag is going to miss him if he goes to public school next year! Their bedrooms are close to each other and I often find Teag snuggled up in Gav's bed listening to stories with him on his cd player at night. This little guy is quickly becoming a part of every activity too and never wants to be left out! He loves playing in Teag's room, and follows her everywhere during the day. He even calls for her at night if I don't get in there quick enough! Christmas flew by this year and again I don't have too many pictures, but lots of memories were made for sure. Teagan had her first preschool program a few weeks before and was so excited to show us her songs and bible verses. The kids had been passing around a yucky cough/cold thing the week before and Bode ended up in the ER with me the day of her performance with croup. He's the first of the kids to get it, and it was terrible (and so sad!). So I stayed home with him that night and Trent took Teag promising to video it and take pictures. Here they are before they left, I was so sad to miss it! As soon as they were back we watched the video and Teag re-enacted the whole thing for me- it was adorable! Teag is definitely not shy and it was so fun seeing her get to have her own special night!

We spent Christmas weekend with Trent's family in Twisp sledding, eating and having fun with family we hadn't seen in awhile!
On Christmas Eve we went to church and then got together with friends of the family for the 'Happy Birthday Jesus' party. Every year the kids act out the Christmas story and then we have cake! This was the second year that Gav was Joseph and Teag was an angel. Bode was a wise man but wasn't ready to sit and listen- I think he was crawling under the chairs in the back! We opened presents Christmas morning and then headed back home later in the day so Trent could get ready for work Monday morning. My mom flew in Christmas night and spent the week with us at the house! We spent alot of time playing with new Christmas toys, baking and eating yummy stuff, and just being silly. I got a new vacuum for Christmas (so, so exciting!) and I think I used it every day- it was theraputic! There's nothing better than a good vaccuum! Trent has been a skier since he could walk and decided that this was the year to bring Gav with him and teach him too. The guys went last week for what was supposed to be a half day on the bunny hill. They ended up skiing all day and even went up the big chair lift to the top! I'm glad Trent told me this after they had already done it (and survived). I love to snowboard and can't wait until we can all go as a family- but the chair lifts still freak me out! Gav loved it and is already planning their next trip!

That just about catches us up once again after not blogging for months...again... I was talking about this with Katie (Maddie's mom) the other day and realized that I have intentionally avoided blogging this last year or so partly because we're busy but mainly to sort of 'disconnect' from the heart world. Teagan's whole first two years were filled with Dr.'s appts., surgeries, feeding tubes, worry, anxiety, etc... and once every thing sort of settled down- it was nice not to have to think about it every second. Of course I still think about her heart, health and future every day and worry about whats ahead- but not every minute any more. I get on the blog and read up on how all our heart friends are doing almost daily, but for some reason just felt like posting here made it too real again. But as winter turns into spring, things are about to get real again as we are most likely facing Teag's 5th heart catheterization and 3rd open heart surgery. (the fontan completion) We have an appointment in March at Seattle Children's and should get a pretty good idea of whats ahead for this summer. Teag seems to do pretty well day to day, but its the little things that we're so used to that I'm starting to notice more and more. The constant blue lips, out of breath as she climbs our 1 flight of stairs, wanting to be carried from the parking lot to the store because she's tired, and the slight clubbing of her fingers and toes. Its so hard to admit that she's actually still pretty sick and that this huge surgery stands in between now and her feeling better. I'm trying not to dwell on it too much until March comes and we know more. For now, I'm trying to cherish all the small moments and fun things we're able to do while she's doing so well. We really have been so blessed these last 2 years with her needing such little intervention, and are looking forward to having this third surgery behind us!

Where to begin..

2011-10-23T23:04:00.000-07:00

Where to begin! Its been so long since I last updated the blog that I figured I'd just jump right in with what we're up to this fall!

Gavin is officially a kindergartener! We chose a homeschool co-op program for him this year called Homelink while our local elementary (across the street from our house) is closed for the year while they completely renovate the whole building. (They chose to bus the kids to a temporary building across town and we weren't diggin it.) He goes to classes like Lego building, creepy crawlies, weather and drama among others on tues. and wed. Then we learn at home the rest of the week using curriculum ordered through the school. It is alot of work but so fun! This big girl also started school this fall! Teag goes three days a week (mornings) to an amazing montessori school and she loves it! On the first day some of the kids were sad at drop-off and I could barely get a wave good bye from her! (I'm the sad one begging for a hug, ha)

Bode is 18 months old and my little sidekick. He's definitely a mama's boy and I'm loving it! He is talking so much and learning to hold his own around his brother and sister. He finally has almost all his teeth in and is sleeping through the night most nights. (finally!) He makes the kids (and us) laugh all the time and has has some killer expressions. We love this little guy! Last week I had a birthday (the big 30!) and Trent took me away for the weekend to Hood River, OR. My mom flew out the same week for a visit and had the kids while we were gone which was so great! We had an amazing time eating fun dinners out, golfing and tasting wine! The kids keep asking if we can 'leave again' so they can have alone time with Grandma or Nana!

Seattle Children's is featuring Teag's story in their November newsletter so we took a few pics to send them. It amazes me everyday how great she is doing and how big she is getting! She has another cardio appointment next week and we're still tenatively planning on her Fontan this coming spring or summer. She still takes her Captopril 3x's/day and 1/2 an aspirin, and it seems to be working for her!
We have had such a great summer and fall is off to a great start as well!

Still here and doing well!

2011-02-15T16:49:00.000-08:00

We are still here! ha, and doing well! Alot has happened since I last updated around Halloween so I thought I'd do a quick re-cap...

In November we traveled back to Illinois for Thanksgiving and to celebrate my Great- Grandma's 100th birthday. We got to spend alot of time with my mom, stepdad and brothers before driving over to Indiana for the birthday party. My Great-Grandma lived most of her life on this amazing farm in a small town in Indiana and I love going back there and walking through her old farmhouse and poking around in the barn where we used to play as kids. The whole family was there and we had fun taking some photos around the farm. Here's a picture of all 5 generations of women on my mom's side- pretty amazing! My great-gran, my grandma, my mom, me and Teagan. My poor great-gran was so tired at this point, but this is the only pic I could find of all of us!

Christmas was great this year with the kids at such fun ages. We did lots of crafts/ornament making/baking and wrapping (and re-wrapping after Bode got his hands on them!) We celebrated as a family a few days early and then headed up to Trent's parents house for the week. Christmas Eve we all went to church and then headed over to Nana Barb's house for a "Happy Birthday Jesus" party! The party started with a re-enactment of the Christmas story and Jesus' birth. Gavin played Joseph and was excited to dress the part until he looked in the mirror and decided that his long robe made him look more like Mary, ha. Teagan was an angel and got to carry in the big star and lead everyone in to the 'manger'. She took her part very seriously but got her bible stories a little mixed up when she slammed the star down on the manger and yelled,"Ramses, let my people go!" (we had just watched 'The Prince of Egypt") We spent alot of time playing out in the snow and sledding down the big hill at Nana and Pacaw's too!Bode is growing up so fast and is 10 1/2 months old now. He is crawling everywhere and pulling up and pushing anything he can across the room. He loves to play in Gavin and Teagan's rooms and check out all of their 'big kid' stuff. He pulls up to Gavin's lego table all the time and sweeps his hand around to see if he can grab any little pieces.... I've pulled a few lego heads and other things out of his mouth lately, he's fast!

Here he is checking on what sister is up to. She loves to play mommy and is constantly telling him what to do (or not do!) She is always asking to feed him and is sad that he doesn't like to take a bottle (we're working on this!)

Teagan is also growing up fast lately! She's been in 'big girl pants' for a while now and is doing great! She's very independent and is always asking me to leave the bathroom if I'm trying to help her and gets offended when I try to put a pull up on her at night, ha. Its so nice not to have two kids in diapers, but its sad at the same time to see her getting so big! She loves all things princess, tinkerbell and dora/diego right now, and also dressing up 'fancy'.

At the beginning of the year I put her on the waitlist for the 2 year old preschool class after she was crushed that Gav was going to school and not her. She was pretty far down on the list and I forgot that we had put her on it until the school called in Jan. and said they had an opening. So Teag is officially a preschooler as of Feb. 3rd and loving every minute! She gets to go one day a week for two hours and loves, loves, loves her class. Here's Gav giving her some pointers before her first day.

So one day a week for two hours or so, this guy gets me all to himself! I love having a little alone time with him and I'm sure he appreciates the quiet playtime too! He is such a sweet boy, and a snuggler too! He's been having a hard time with his teeth lately and just finally broke his FIRST tooth through at 10 1/2 months! Poor guy... he eats pretty much all table food but has nothing to chew it with!

Gav goes to preschool 3 days/week and loves his class too! He's 5 1/2 now and due to start kindergarten in the fall. I found a really neat homeschool co-op that I think we're going to try called Homelink and I'm excited to learn more about it. I'm a little nervous about taking on homeschooling but I think it will be fun!

My little buddy!
Sweet, sweet girl!

Happy guy!

Halloween!

2010-11-04T22:56:00.000-07:00

Halloween weekend was alot of fun this year! These are some pictures from the last few weeks...

We've been to the pumpkin patch a few times this year and last week I took the kids back again to take some pictures and let them run around.... Teag's lips were really blue that day and it was cold which wasn't helping!

Her favorite shoes right now are her rain boots! She wears them everywhere...

These two crack me up- never a dull moment! They say the funniest things to each other and are always laughing at each other (or fighting, ha)

This is usually how the photos of all three of them go... I finally get Bode to look at me (and smile) and then the kiddie train drives by and blows the whistle!

Bode's face here makes me laugh- like,"really mom? more pictures?"

Halloween night we headed out to the harvest carnival at church, and then Trent and I took them trick or treating. Gavin had decided what he wanted to be a few months ago- a tow truck... We worked on it for a few days the week before Halloween and it turned out really cute! He was so happy!

Here's my little butterfly princess!

Bode was a dinosaur for about 10 minutes and then he was over it. I'm glad his outfit was only $7, ha... Gavin wanted him to be a car so he could 'tow him' but we couldn't quite figure out how that would work. He kept telling me that it would be his first 'big job'....

Bode is sitting up pretty much on his own now, and almost crawling! He wasn't too crazy about this outfit though- sorry buddy!

Here's how trick or treating looked- Bode sleeping, Teag cold and tired (but still wanting candy), and Gav so excited for people to answer the door that he was peeking in the window... We would laugh so hard when there were other kids around because as soon as he got his candy, he would turn to leave, forgetting how long the back end of his truck was- and take out any kids around him and anything sitting on people's porches!

I love our front yard in the fall. We have a maple tree that drops beautiful red, yellow and orange leaves. Its not so fun to rake them all and get rid of them, but the kids love love to play out there right now!

I love this gummy grin, I could just eat his little chin! He's in full on teething mode but still no teeth yet. But watch out when you hold him, he'll try to bite into anything he can get in his mouth!

Happy Fall!

The end of summer...

2010-10-22T17:24:00.000-07:00

The end of summer came a went without me posting any more of our pictures. We had so much fun and stayed so busy (especially in august) that I couldn't post anything about fall until I'm caught up! The kids and I were up at Trents' parent's house quite a bit this summer, and for most of the month of august. The beginning of August was cousin Emmett's 3rd birthday and we had a huge 'John Deer' bash! All the kids had hats, bandanas and everything John Deer- it was amazing! Once the kids all had their gear on, we had to take some pictures of them down by the river...

Here are all the cousins (minus Bode) Teagan, Emmett, Garrett & Gavin

Of course it worked out to do this in the middle of the afternoon when it was 100 degrees, but the kids didn't seem to mind!

These guys love eachother so much! Garrett and Gavin were born 2 days apart and share a really special bond. We got to spend alot of time with cousins this summer and it was great!

Its so fun watching the kids explore and just enjoy the 'country life' while we're up there. So many memories are made down by the river!

The next day was party time- Emmett's 3rd birthday! Gav loves a good party and was right there to help Emmett with the candles.

Pizza and cupcakes!

Teag was really in to the pinata. She would swing the bat as hard as she could but would hit it with a tiny 'tap' that barely moved the thing. Actually no one was able to break it open with the plastic bat and Uncle Shaughn ended up ripping it open and shaking out the candy, ha.

Sack races, yah! This was actually really funny to watch. I think Gav actually won- propelled by the force of his crazy hair.. Teag got tired about 3 jumps in and decided to sit down...

The highlight of the party was the John Deer train! A really good friend of the family had built these cars for his grandkids to use when they visit, and brought it down for the kids (and adults) to use for the party. Each car had its own cushion, flag and bike horn and the kids spent atleast an hour or two in them!

After the party excitement and long ride on the 'train' Teag was worn out. The ride put her to sleep (or the fumes from the exhaust- it was a little strong..) even with Gav layin on the horn behind her.

and here's the Bode-ster... He slept through most of the party but he wasn't immune to the photo-op torture. We tried a bunch of really silly shots before we got this one... (he's barely 5 months old here. There's a hand behind him somewhere holding him up!)

Here's our best shot of the kids with Nana and Pacaw...

Here's the kids with my mom. She was able to visit us for two weeks in August and enjoyed the country life with us for a bit too!

More to come about our end of summer!

Water babies

2010-09-09T21:25:00.000-07:00

Last month the kids had a chance to take swimming lessons up at Nana and Pacaw's house for the first time. It was alot of work to get everyone ready and out the door everyday to head to the pool, but it was totally worth it! Gav and Teag were both signed up in their own classes, one at 10 and one at 10:30. The other challenge was keeping them entertained/out of the pool while they waited for their turn.

The water was pretty cold that early in the day and it was hard to convince them that they needed to get all the way in. Gav's teacher had a nice trick- she'd have them start class by going down the slide! They were so excited, that I think they forgot that going down the slide meant they'd be in the cold water. It seemed to work pretty well!

Gav seemed to learn pretty quickly and by the end of the week he was pretty excited to show off his new skills. Teag is still a little young I think for the whole 'class' setting. She was the youngest one in her group and didn't really like the idea of doing what everyone else was doing. (no surpise there! ha) I was just happy that she was getting in the water at all and trusting her teacher to help her float and kick without me right next to her. She liked to wander away from the class and play with the water noodles, or come see me for a goldfish cracker before she went running off again. Her favorite skill to show off is how she learned to 'blow bubbles' with her face in the water.

I love this little ruffle bum!

With the water being so cold, it was only a matter of minutes before Teag would run out of the water shaking with blue lips. I kept a pair of warm dry clothes near by and we'd just change her and let her play by the pool if she didn't want to get back in. This left lots of time to be silly with her cousins who were taking lessons too!

Bode tagged along everyday too and enjoyed all the action. He hung out, napped in his carseat and got alot of love from all the pool mommies!

On a side note, I took Teag to the cardiologist last month because she'd been having alot of blue spells and acting really tired. Everything checked out ok and her sats were in the low 80s, so Dr. T thought that it may be the heat bothering her and making her so tired... We did have a pretty hot August here and she was definitely more active this summer than last so we're hoping thats all it is. I feel so blessed that she's needed such little intervention since her Glenn surgery almost two years ago, and if this is her summertime 'normal', I'll take it!

Summer fun!

2010-08-03T23:26:00.000-07:00

So I'm not doing very well at getting 'back to blogging', ha... We're staying busy spending time at Nana and Pacaw's house this week up north. I'm away from my normal computer and all those summer pics I wanted to share, so I thought I'd post a few quick pics from the last couple of days. My mom is out visiting from St. Louis and brought my brother's camera back out again for me to borrow for awhile. Having a nice camera makes such a difference, and I'm having so much fun learning how to use it! I'm so jealous of all of you who have one of these to play around with everyday!

The kids are taking swimming lessons this week for the first time with their cousins and its been really fun. Teag and Gav are in their own classes and are doing so well!

Bode is so sweet and getting so big so fast. He deserves a post all his own (hopefully soon)! He has the best dimples and cutest smile, and his laugh is so funny. He's enjoying watching all of the action and craziness here at nana's, and loving all of the attention from grandma/nana/auntie!

Here he is watching the big kids swim. He can have a whole conversation with you using just his eyebrows. His big belly and chunky legs are out of control, ha!

We took the kids and cousins up to Winthrop yesterday for icecream and pictures. Main street is all these old western looking buildings with cute shops, wooden walkways and great views of the river. So fun!

Back to blogging!

2010-07-28T11:56:00.000-07:00

I'm determined to make a return to regular blogging soon. I can't believe the summer is half over and I haven't posted a thing! I have lots of fun pictures to post and things to write about. Today we are off to see the cardiologist to check on Teag. She's been asking to be carried up the stairs more and more lately and has had more blue spells, so we'll see how her numbers look... Then we're headed to Bode's 4 month check up, 4 months already- I can't believe it! More to come soon!

Lately...

2010-05-23T16:08:00.000-07:00

The last two weeks have flown by and finally all 3 kids are healthy again! Teag ended up not having Kawasaki's (yay!) and just an infection of some sort that cleared up with antibiotics. Then all of the kids passed around a yucky cold/cough/fever thing that lasted until a few days ago. Bode was the last to get it and is still pretty stuffy- but nothing major thankfully.

We've had visits from my dad and stepmom who flew up from Las Vegas, and also from my mom the next week who flew in from St. Louis! The kids have gotten alot of attention and were very spoiled! We had so much fun visiting with Grandma's & Grandpa's and are so lucky to have them!

Bode is doing really well and growing fast. He turned 8 weeks old on Thursday and has his two month check up this tuesday already! He has been a little colicky (sp?) at night the last few weeks and had some tummy troubles that we're hoping will come to an end soon. But he is the sweetest baby and has the best dimples! The kids are calling him 'Bode-ster' still and also 'little buddy' and are so gentle (mostly) with him. Teag does have a habit though of cramming his binky back in his mouth whenever she sees it, sweetly saying,"there you go buddy, there you go." ha...

My brother let me borrow his nice camera last week so I could take a few pics of the kids. Here are a few of them... I can't wait to get a camera like his!!

Cuts, Carts and Cuteness!

2010-05-09T23:30:00.000-07:00

We're celebrating mother's day tommorrow since Trent had to work today- so I thought I'd write about what we've been up to this week!

Gavin was long overdue for a haircut so the kids and I headed over to 'Monkey Dooz' on Tues. Its a really cute kids salon where they play cartoons, have fun cars for the kids to sit in and stylists that are used to the kids moving all over the place! Teag decided that she wanted a haircut too once she saw the pink car so they both ended up getting a trim.

Gav decided he wanted to stand instead of sitting in a car... I think the stylist was more than happy to sit instead! Here he is in the 'cartoon coma', ha.

Teag requested pig tails after her trim and she also got sparkles put in her hair. She was so excited and now asks me for 'sparkle ponies' at home!

After the haircuts, we made a trip to Fred Meyer (grocery store) for a few things. The kids love this store because they have 'car carts' so they can drive while I shop. This was the first time we've gotten a 'car cart' with all three kids- doesn't leave much room for groceries!

Teag's cardiology appointment was rescheduled for this coming wed. so no updates there. But we did end up at the dr.'s office on Friday. Teag was acting a little off towards the end of the week and was really irritable and fussy. Thurs. night we took her temp and it was 102! She didn't have any other symptoms except really red eyes, so friday we went in to have her checked out. The dr. said her throat was really red but that kids her age don't typically get strep (even though its going around here). He was more concerned that she may be showing signs of Kawasaki's disease instead of just having some sort of virus or infection. As soon as I heard this I started to panic- we don't need anything else affecting her heart!! The dr. agreed to try some antibiotics over the weekend and see if she improves. If it is Kawasaki's, he said that her fever and other symptoms won't get any better in the next few days. So we started antibiotics friday night and over the weekend she seems much better and her fever has been gone since saturday. We're praying this means that she's fighting off an infection and nothing worse. She has an appointment in the morning to get checked out again and possibly have some tests run to completely rule out Kawasaki's- say a quick prayer for her if you would!

Teag has really been in to dressing up lately and carrying around her purses- so cute. So since she's not feeling too hot this weekend I thought I'd post a pic from last week. Her shoes kill me- they're so awkward to walk in and so loud! You can hear her walking down the hall from anywhere in the house, ha. My little fancy nancy!

One month old!

2010-05-04T22:01:00.000-07:00

Wow.. I can't believe Bode is already 1 month old! (actually, he'll be 6 weeks on thurs!) Time flies when you're having fun! (and when you're crazy busy with 3 kids 4 and under!) Things are going pretty good and Bode is growing so fast! He likes to eat every 2 - 2 1/2 hours (all day and night) hence the large belly, and still sleeps quite a bit in between.

He has really big blue eyes and looks just like Gav did as a baby. His eyebrows are so blonde they're almost invisible!

He's not quite smiling yet (except in his sleep)- this is as close as we've gotten so far...

The kids have nicknamed him 'Bode-ster' ("boad-ster") and 'little buddy'- so cute!

Look at that belly! I'm pretty sure he's close to 10lbs already...

The kids love to help me with him during the day and always run to 'help' him when he cries. Teag loves to come and tell me that "Bode needs me" whenever he starts to fuss- such a good sister! We took our first trip with Bode up to Trent's parents' house a few weeks ago and took him on his first hike!

I'm still adjusting to life with 3 kids and making sure everyone is happy and getting what they need. There have been a few 'incidents' - like when I was cooking and Teag tried to share her cereal with Bode during breakfast... I turned around to see her putting a piece in his mouth! We then had a long talk about how babies can't eat cereal- or any food for that matter unless mommy or daddy says its ok. And that we should never, ever put anything into Bode's mouth! There was also the day that Teag, Bode and I were picking up Gav at preschool and I was putting Bode in the car. The wind blew so hard it knocked Teag over and at the same time slammed the car door shut on Gav's hand... not a good day.

Teag is also very interested when I nurse him and asked if she could "eat from my belly too." My heart hurt for her when she asked me because I was never really able to nurse her- but I've been giving her extra snuggles and loving on her and Gav whenever I can!

Teag has a cardio appt. in the morning for the first time since Jan. so I'll update with the (hopefully good) news after that!

Bode's birth story

2010-04-12T19:35:00.000-07:00

Here we are 2 weeks later, and I'm just now finding a second to write Bode's 'birth story'! *One of the pics is a little graphic (just a warning!) Going into this pregnancy I knew I was going to have a c-section (this was my 3rd) so I knew Bode's birth date back in Nov. which is kind of fun. My mom flew out from St. Louis the night before, and Trent's parents drove down the night before too. I was scheduled 'first case' at 7am on Thursday and needed to be at the hospital by 5am for my pre-op. Trent and I stayed up until 2am the night before just talking and packing and getting used to the idea of having 3 kids, ha. I don't think I slept the other 2 hours until the alarm went off at 4- I was so excited/anxious/nervous!

Just arrived at the hospital- last picture of the belly!

About to get my spinal... ouch! (Trent took this pic watching through the window. They don't let him in until I'm all ready to go)

Trying to relax and breathe! The dr.'s are about to start...

Trent does so good in the OR with me and never has a problem watching everything going on. Since this was his 3rd (and final) c-section to watch, he decided he wanted to see everything! The dr. even invited him around the curtain to stand next to him for a few minutes while they were getting ready to pull Bode out. I just remember saying,"don't pass out babe, I need you!" ha... I made him come back pretty quickly and hold my hand (its no fun laying there alone!) Here is our fist pic of little Bode (the graphic one, sorry) I just love seeing him coming out so healthy and screaming!

First pic with Daddy. Welcome to the world Bode!

First pic with Mommy! I love those first moments- I just wanted to smell his sweet breath and hold him!

This c-section was by far my best experience of the three. I didn't feel sick at all and stayed awake the whole time! About an hour later our parents were able to see us in recovery and Teag got her first glimpse of her "baby Bode"! (Gav was at his preschool pajama party and came a little later- priorities! ha...)

Teag's first look at Bode- so sweet!

Gavin seeing Bode for the first time! He kept saying,"aww, look at him! I just love him so much!"

Bode about to get washed up, looking a little unsure..

Checking on baby bro...

So tired, but so happy!

Gav talking to him about 'guy stuff'... He loves having a brother!

Teag sharing her little lamb.

Life with three kids so far is awesome. I'm totally exhausted but loving every minute and feeling so blessed to be a mommy of 3 amazing kids!

He's here!

2010-03-25T18:21:00.000-07:00

He's here! This morning's c-section went great and baby and I are doing really well, just tired!

Introducing Bode Michael Maxwell! Born March 25th @7:37 am. He weighs 7lbs 12 oz and is 19 3/4 inches!

He's been thoroughly checked out including having an echo, and everything looks great! He's really sleepy and not eating too much yet- but he's a great baby! More pics to come!

Birthday girl!

2010-03-23T10:21:00.001-07:00

Sunday was Teagan's 2nd birthday! Sadly our whole family has been passing around a yucky respiratory infection, fevers, and coughs this last week.... Teagan was absolutely miserable on sunday so we just had a little family party here at the house, deciding not to share our germs with any other family or friends!I can't believe we're already here at '2' and Teagan is quickly turning into a big girl! She loved her new princess gear and reading chair, and has taken her new bubble mower out for a quick run around the yard a few times. All day she kept asking,"mommy, is it my happy birthday?" She talks so much now, its amazing and really funny to hear some of the things she comes up with!
Trying out her new princess shoes-

and earrings!
I've been so bad about updating these last few months, but hopefully will get a little better starting this week with our new addition! I'm scheduled for a c-section this thursday morning (2 days!) at 7am. Please say a prayer for our family this week that all goes well, and that everyone feels better soon!

Happy Valentines & CHD Awareness Day!

2010-02-14T14:10:00.000-08:00

Valentine's Day is even more special now that we have one more reason to celebrate! This is the 2nd Valentines that we've celebrated not only the holiday but also CHD awareness day. Teagan is doing great and we couldn't be more proud of her. This Valentines we're praying for all families dealing with CHD's and celebrating another holiday with our little fighter!

Here are my two little 'love bugs' this morning in the kitchen. We're spending a rainy Valentine's at home baking treats, making crafts and taking some much needed naps!

Party of 5!

2009-12-11T22:15:00.000-08:00

#2
#3
#4 #5!
This post is loooong overdue! But we are excited to announce that as of March 25th (or sooner!) the Maxwell house will officially be a party of 5! We are feeling completely blessed, excited, anxious, and overwhelmed all at the same time. I am 24 weeks already and feeling great- just getting big much faster than with Gavin or Teagan. I have had several ultrasounds and at the end of October had a fetal echo to check for any heart issues. This baby is HEART HEALTHY!! As soon as the tech put the wand to my belly and I saw 4 chambers I was relieved! I'm still having a hard time truly enjoying this pregnancy with many fears still lingering in the back of my mind, but knowing that we have a whole heart makes things much easier...

Here's a look a baby M Nov. 4th (19 weeks)

Its a BOY!

Tiny feet!

Happy Thanksgiving!

2009-11-26T19:35:00.000-08:00

Happy Thanksgiving!

October wrap up!

2009-11-08T17:31:00.001-08:00

Wow, October has come and gone and I didn't post once! There's defintely been alot happening around here so this might be a long update!

Gavin finished up his first season of T-Ball and got his first trophy! He really enjoys batting and running the bases, but is not a fan of playing the field saying it was boring- ha! He had alot of fun playing his first team sport but I think we might try soccer in the spring!We made it to the pumpkin patch twice this year and met up with the Allreds on our second trip! We had so much fun and I loved seeing both kids run around together and have a great time. Last year, Teagan had just had her Glenn and was struggling a bit- needing her NG and not feeling great. This year she was all over the place trying to keep up with Gavin!
Katie and I with the kids Gavin and Cade- best buddies!

Fall is definitely here to stay and the leaves have been falling off our trees faster than we can rake them! The kids love running through our piles before we can bag them up!

Teagan had an appt. to get her cast off on the 21st and I was more than excited. Even though it had only been 3 weeks, I think we were both ready to see it gone!

Waiting for our appt. and enjoying fruit smoothies- yum!After the dr. cut off her cast she started to cry and tried to put it back on! Eventually she thought it was funny to be able to put it on either hand and was pretty entertaining. We went over to x-ray next and they came back showing that she wasn't completely healed- so the dr. re-casted her!

Here she is getting her pre-cast padding on. I don't have any pics of the finished product but we went with a much lower key purple this time. After two more weeks we took her back in (this last tuesday) and had it taken off for good!

A few days after Teag was re-casted we attended the Harvest Ball fundraiser benefitting Seattle Childrens Hospital. Teagan was the 'feature patient' this year and I was so bummed that she still had her cast on! I have so many pictures from the night that I'll have to write a new post soon!

Last week Teagan had a cardiologist appt. for the first time since July. She had an ekg, echo and all the other usual stuff and everything went great! I was nervous about how she would handle her echo since it had been 6 months since her last, but she laid there and watched cartoons like nothing was happening! Right now her heart function looks good (for her anatomy) and we're scheduled for a SAT check/follow up in Jan. Dr. Herndon didn't up any of her meds, and discontinued her ranitadine (for reflux). So she's only on her aspirin, Captopril (2mls- 3x's/day) and furosemide (lasix) (.6mls-2x's/day). We decided that she no longer needed her reflux med (ranitadine) and so far she's done fine without it. I think she's actually eating more now that its stopped! She's still not on the growth chart- weighing in at 20lbs 3 oz at 19 months- but no one is too concerned. We've really been pushing the pediasure and Boost Kid essentials in between meals and she's slowly gaining weight... Her sats were 87! Which is a little higher than last time (her usual is around 83). I asked if it was normal for her sats to be going up instead of dropping and Dr. H said, "hey, we'll take it!" ha...

I'm working on another post about the Harvest Ball and also have some exciting news to share soon!

At least its pink...

2009-10-01T23:46:00.000-07:00

At least its pink right?

Teagan broke her arm this week! I still can't believe that it happened, but I'm reminded every time I see that flash of neon pink running around... We were out at the store on Saturday and she fell pretty hard on the tile floor. She seemed ok, and I was able to calm her down within a few minutes so we headed home. But that evening and all day Sunday she seemed a little 'off' and would complain when we dressed her or touched her left arm. So on Monday we took her in for an x-ray and sure enough she fractured both bones in her left forearm! The Dr. said it looked like a 'Torus' fracture and told us its pretty common in little kids and heals fast. But that it would be good to cast her because its hard to tell an 18 month old to 'be careful'. Funny, I tell her that all the time! She only has to wear it for 3 weeks but I can't imagine how it will look by then. Its already brown and has bits of food in the cracks... mealtime is interesting for sure! I've been using lots of purell on her cast hand and trying to find clothes that fit over her arm which has been challenging. Teagan doesn't seemed phased at all by her new accessory and thinks its funny to bang it on every surface she can to see what noise she can make. She's also learned that its quite the weapon when playing with Gav!

Here's my successful bag job before her bath last night. A large ziplock and some medical tape worked great!

Not slowing her down in the sandbox!

Birthday Boy!

2009-09-30T22:30:00.000-07:00

A few weeks ago Gavin turned 4! I still can't belive my baby is getting so big.... He is the most loving, thoughtful and silly boy I know and we love him so much! He loves to sleep with his green blanket, asks for warm 'coffee' every morning (warm milk with ovaltine), makes up jokes and stories that make us all laugh, and says he never wants to cut his hair. He's the best big brother around and my helper boy whenever I need him. He wanted a contruction themed party and we had fun planning and putting his invitations together.

Here are some pictures from his party weekend:

Birthday dinner at the Olive Garden (his fav place) This guy loves fettucini!

Dad, Gavin and Uncle Cayle

Party stuff

We had his party at the local gymnastics place and he had so much fun running around with all his buddies. They were all sweaty and worn out by cake time!

Teag loved the party too, especially the hats!

Happy Birthday Doogie! We love you so much!

Still here...

2009-09-17T23:34:00.000-07:00

Yes, we are still here and doing well! The last 2 months have flown by and we've been busy enjoying lots of 'end of summer' activities. I get on the blogs and read about all of our friends every day, and I can't believe I've gone almost 2 months without posting here! Some of our end of summer highlights include: Fun times with cousins, grandma and Nana & Pacaw, free summer movies at the mall, visiting with all the heart families at the annual summer picnic, spending lots of time outside and at the park, going to the county fair and rodeo, welcoming home good friends from Iraq, and a great cardio appt. for Teag!

Gavin started his first season of t-ball which has been really fun to watch- go cubs!

He also officially started preschool this week, and loves it! I had a hard time leaving him the first day but he did great.One of my favorite things we did as a family last month was our trip down to Hood River, OR. Gavin's birthday is this week and he has a passion for anything on wheels- especially trains. So as part of his b-day we took a trip down to Oregon to ride the Mt. Hood railroad. None of us had ever been on a real train, and I think Trent and I enjoyed it as much as the kids! We got to ride for an hour to a little fruit farming town, get off to explore for half and hour, then ride back. In the fall they have a harvest train where they take you to a pumpkin patch to get a pumpkin then load it back on the train for the trip back. In the winter they have a similiar x-mas tree trip and also the Polar Express! I think we'll be headed back to Hood River soon!

At the end of July Teag officially graduated from physical therapy! She's walking,climbing and running everywhere and its amazing- we're so proud of her! We still go to OT once a week for feeding therapy- which remains our biggest issue. Teag will be 18 months on the 21st and still weighs around 18 1/2 lbs...

Recently I noticed that her teeth, mainly her front tooth has been sensitive and causing her pain. I'm starting to wonder if this is why she has such a hard time eating. Now that she's talking so much more, she's started to touch her front tooth and say "tooooof!" in a sad voice. One of her front teeth came in discolored and missing the enamel and my dentist told me it was probably from one of the meds she was given in the NICU... He dismissed it as minor and said that her permanent teeth should be fine. But now that she's uncomfortable I made her an appt. for tommorrow morning with a local pediatric dentist who can hopefully help her!

Teag had a cardiology appt in August and everything went well. No echo, ekg or even meds adjusting which made me a little uneasy but they don't want to see her again until Nov!

We have a busy week ahead with more appts. and a construction party for a special boy! Thank you for checking in on us after we checked out for so long!

Walking is dangerous business!

2009-07-23T23:28:00.000-07:00

Its Official!

2009-07-22T22:45:00.000-07:00

Teag is walking!!! I'm so proud of this little girl! She's been working so hard at it lately, and gets up to try again every time she falls down. She's so proud of herself and happy that she has a whole new view of the world! Her new skills are proving to be a bit dangerous though, as she falls about 100 times a day-usually face first. Today she woke up with a lovely black bruise under her eye from one of her adventures yesterday!

5K Heart run and Team Teagan!

2009-07-22T00:09:00.000-07:00

We had so much fun participating in the Run Royal 5K last saturday in honor of Maddie Allred and for the Children's Heart guild! Our good friends the Allreds live in such a small tight-knit community and I was amazed at how many people came out to run and support Maddie, the heart kids and pediatric heart research!

Our family was decked out in official 'Team Teagan' gear and we had a great time running together!

Go Team Teagan!

Courtney, Brian, Me, Trent, Gav and Teag

Here's a few close ups of what our shirts looked like:

After the 5K, there was a kids fun run and Gav really wanted to try. Here's Gav running his little legs off with Trent by his side...

Here's Gav with my brother Brian... All that running wore him out!

Here's Teag and I with Katie and Maddie Here's a photo of all the heart families/kids that came out for the race:

The Allreds, our family, Jill & Kate and Wyndi & Izzy

Teag and Maddie together, these girls love each other!

All of the money raised went directly to the Children's Heart Research Guild. The Heart Research Guild (click here for the website) is a newly formed organization formed by parents of children with heart defects and raises money for Children's Research Institute, which is the research arm of Seattle Children's Hospital. Our little babes futures depend on advancements in medical science and we were thrilled to be a part of something that goes towards this cause! Hopefully this will be an annual event and we can work to raise even more money next year!

No words needed!

2009-07-19T23:14:00.000-07:00

4th of July...in pictures! (and a few words..)

2009-07-17T22:30:00.000-07:00

Wow, we're getting behind again! I thought I'd start back at our 4th of July weekend...

Teag and her 'Cacaw'...

All the cousins...

Teag showing off those skinny legs! (not walking yet, but close!) Gav and Nana watching the parade in Twisp...

Quick lunch after the parade...

Making a boat together at the arts in the park festival...

Gavin and Garrett testing out their boats in the river!

Sparklers!

Harvest Ball 09'

2009-06-30T22:30:00.000-07:00

Every fall here in the Tri-cities, the local guild for Children's Hospital holds their annual fundraiser called the Harvest Ball. This year the committee asked if they could feature Teagan's story in their brochure and I was so excited! The Ball isn't until October but the brochures were mailed out to local businesses and healthcare centers last week. We all get to attend the fundraiser in October and I'm supposed to get up and say a few words. (nervous already!) Here's a look at what they included: Teagan Maxwell was born with a unique heart defect that left the left side of her heart severely underdeveloped and nonfunctional. On the seventh day of Teagan's life she received life-saving, open-heart surgery at Seattle Children's Hospital. It wasn't until 35 days later that she was able to come home.

Thankfully, the same week that Teagan returned home the Children's Tri-Cities clinic opened its doors. With Seattle Children's hours away, the new local clinic was a blessing to the Maxwells, saving them from driving to Seattle for weekly visits. And, the family had great peace of mind with the expert pediatric cardiologists available in the Tri-Cities.

At 6 months of age Teagan received her second open-heart surgery. This time her recovery was much smoother; she was home in 14 days and no longer required a feeding tube. Between her second and fourth birthday, Teagan will need to undergo a third open-heart surgery so her heart will function as a single-ventricle or "half-heart" for the rest of her life.

In her short lifetime, Teagan has shown tremendous strength and courage that brings hope for other miracles. Your gift to Seattle Children's hospital means all children like her can receive expert medical care when they need it the most.

I don't have the information yet on how to purchase tickets to attend the dinner, but I will post as soon as I do!

Catching up!

2009-06-28T23:29:00.000-07:00

Its been so long since I've posted that I don't quite know where to begin! The last month has been full of fun summer activities, re-roofing our house, Trent and I seeing our cardiologist, new teeth coming through, cancelled appointments, anniversaries, and a fun visit from Grandma!

We survived the re-roofing project, and the 3 days of no napping... (it was loud!) Here's a look at the roof, halfway done...

Trent and I both had cardiology appointments a few weeks ago that went really well. We had ekgs and echos done and were both given a clean bill of heart health. I had been really anxious to get through these appointments, nervous that something would come up- so this was a huge relief and answer to prayer!

Speaking of answered prayers, Teagan was scheduled to have eye surgery tommorrow to clear up her clogged tear duct she's had since birth. The surgery that she was supposed to have is pretty invasive requiring her to be asleep and intubated while a small tube is placed in her duct which stays for 6 months to open up that pathway. Amazingly, in the last 2 weeks her eye seems to have cleared up on its own! We were always told that it could clear up on its own as she grows bigger, but if not by 1 yr. then probably not at all without surgery. I have been praying about this for some time, dreading yet another procedure/hospital stay, and I'm happy to report that her surgery and related post op procedures have all been CANCELLED!

My mom (Grandma) just left to go home yesterday after a fun-filled two week visit. During her stay Trent and I celebrated our anniversary and spent the evening out to dinner and a movie!(thanks mom!)

It was so nice having my mom here the last few weeks and we miss her already! The kids got a few new toys, we laughed a ton, went to the park and pool, baked lots of goodies, took a few day trips, walked, and just enjoyed having her around!

Here's a picture of Teag saying,"pleeaase!" Probably asking grandma for something, she knows the answer is always- yes!

First trip to the pool... the water was cold so I only let her put her feet in. That was enough to get her lips the same color as her swimsuit but she loved it!

My little "Ralrus"

Lately....

2009-05-19T23:13:00.000-07:00

Lately we've been doing great and keeping busy! Teag is active as ever and growing new teeth everyday. She is turning into a toddler before our eyes, where did my baby go?

This last weekend, we headed up to Trent's parents house to help brand a few calves, hike to our favorite spots, and enjoy the start of summer! On the way up we stopped at one of our favorite lookout spots, Dry Falls. Gav fell asleep in the car but Teag enjoyed 'walking' around with us and enjoying the view!

Here are the guys getting ready to 'throw down some calves' as Gav was saying... My cowboys!
This was Gav's first branding and he was excited to watch and cheer the guys on. It won't be long before he's in there with them!

Here's a pic of the girls watching the men work! Tara & Jason came up with us for the weekend and Tylar & Ashley met up with us at the house.

Here's a pic of the guys, just finishing up! Jason, Trent, Tylar & Gary- Happy to be done!
Trent's parents have a beautiful ranch right on the river. Gav loves driving his gator down in the meadow by the river.

We took a drive up to some of our favorite spots on Sunday, the weather was beautiful! Here we are on the way up to Hart's Pass.

Gav & Teag had a great time playing in the yard with their Nana & 'Pacaw'!

We went out to a yummy breakfast in Winthrop and went through some of the shops...

Trent and I even managed to sneak away with friends saturday night for dessert and drinks at Sun Mountain Lodge! We had a great time and enjoyed our first night out since Teagan was born!

Monday here at home it was 95! To celebrate our hottest day of the year so far, I thought it would be fun to pull out the kiddie pool. Teag loved every minute of it and looked adorable in her swimsuit. She only lasted about 10 minutes in the sun though (with sunscreen on) before she started turning pink! I guess thats what long term lasix does for you!

In other news, Teag is scheduled for eye surgery on June 29th to finally clear up her clogged tear duct. I'll blog more about that later, but we're looking forward to having it taken care of for good! Trent and I are scheduled for our own echos on June 3rd just to see if there's anything we should be aware of. Teag's cardiologist said that we're looking to see if either of us have a bicuspid aortic valve, which is a big indicator of Teagan's 'class' of defects. Trent and I are feeling great and do not anticipate anything abnormal showing up, but I am definitely anxious about it! Please keep us in your prayers that all goes well!

Teag at 13 months!

2009-04-29T23:13:00.000-07:00

The last month since Teag's birthday has flown by! Our big girl is 13 months! She is sassy, spunky and fiesty as ever and is doing new things everyday! Her favorite words to say are "nigh nigh" (night night) "daaaaaaddy!!" "ah, ah, ah!" (while shaking her finger back and forth at Gavin) and "dis" (this) She also makes a really cute puppy and kitty sound. She loves to perform 'on command' and will sing "ee ii ee ii uuunnn" if you start Old MacDonald, wave hi or bye, or try to repeat her favorite words when asked. She is in love with her brother and loves to pat him on the back and pull his hair. She is a definite booty shaker when she hears music, clapping her hands and bopping her head.

She refuses to wear a bow or headband most of the time but has no problem piling food on her head and rubbing it all over her face...

She's a good napper, taking two a day and waking up with some serious sleep lines!

She loves:

To sit like a big girl in brother's chair!

Pushing around her cart and trying to walk...

Climbing up onto everything she can...

..and peeking up into the kitchen from the playroom!

Here are a few of her 1 yr. pictures!

Happy Easter, HE is Risen!

2009-04-14T22:29:00.000-07:00

Our Easter weekend was busy and fun! Saturday morning we dyed eggs in our pj's since it was cold and rainy. Gav managed to dye both hands blue and the table/floor where he spilled one of the cups... He said,"its ok mom, accidents happen!" We were laughing and I was loving my blue-handed silly little boy, so happy to be home this year to do fun easter things!

That night we made resurrection cookies and I think it really helped Gav understand what Easter is all about. He loved helping and sealing our cookies in the 'tomb' (oven) overnight until easter morning. We're planning on making it a new tradition, only next year we might revamp our recipe...

The kids weren't too excited about Easter photos but I squeezed in a few after church in the front yard. We had yummy ham and potatoes for lunch and then an afternoon egg hunt!

I can't express how thankful I am to be home to enjoy spring and celebrate easter this year! Last spring is a blur and this year I'm trying to take it all in. Easter was in March last year, Teagan was 2 days old. She was born on good friday (and what a good friday it was!) We didn't learn about her special heart until saturday and she was airlifted that afternoon with daddy at her side. On Sunday (easter last year) I was released from the hospital and drove the 3 1/2 hours over to Seattle Children's where Teagan was. Six days after that she had her first surgery, and 1 month after that we came home. (sorry if that was confusing!) Here is a picture of my little bunny last year on April 14th!

Happy Easter! HE has risen indeed!

Cardiology Update

2009-04-09T23:23:00.000-07:00

Teagan's cardiology appointment on wed. went really well! This was her first appointment since January and her first echo/ekg since Nov. so I was a bit nervous to see how she was doing. I knew it would be interesting to try and entertain Teag for a half an hour laying on the table for her echo, but she did pretty good. We put on a baby einstein video, gave her a sucker and blew bubbles... she was quite entertained until the last few minutes of it. Here she is during her echo.. Next up, EKG... this started out great but ended with a few screams. Something about 12 stickers with clips and wires all over her body that she just wasn't quite ok with! (I don't blame her!) Here she is at the beginning- no wires yet. You can see how distracted she is by her baby einstein...

Here come the clips...

...and the screaming!

This only lasted for a minute, until we were done and I took all those stickers back off! We checked her weight and sats next and then chatted with Dr. Toews. Her sats were actually really low compared to her norm (they were 74, normal is 85) But she has been fighting off a yucky cold so we'll check back in next week to see if they're coming back up. The results of her echo were pretty good. Her heart function is in the 'good for a single ventricle' range, which was nice to hear. My main concern is her tri-cuspid valve regurg. since this has been an issue in the past, but Dr. Toews said that he thought it looked the same or maybe even a little better! He said right now Teag is in a holding pattern and we'll just keep checking in every 3 months or so to see how she is doing. Right now there are no plans for a cath this summer and our next checkup is in July! I asked him if he had a time frame in mind for her Fontan and he said the way things are going that she'll probably be atleast 3 or 4. (and hopefully 35lbs...)

Here is a picture of Teag and Dr. ToewsIn between screams Teag was totally hammin it up for everyone in the office. She was waving and saying,"Hiiiii!" and "uh, uuunnn" (uh,oh). Dr. Toews is keeping her on all of her current meds and doubling her dose of Captopril. He reassured me that this is not because of her heart function but just to adjust for her weight. I guess she was on a really low amount compared to most kids? So now she is taking Captopril 2mls- 3x's/day, Lasix .6mls-2x's/day, ranitadine .5mls-2x's/day, and 1/4 of a baby aspirin once a day. She's also still taking amoxicillan 2x's/day for a few more days to help fight off this yucky bronchitis stuff. -Lots of meds!

Thank you to everyone who said a little prayer for Teag yesterday. I am so thankful to receive such a good report on her heart status. With so many of our heart buddies headed towards a transplant, I know every day we have with Teagan's little half heart supporting her is such a gift!

Sister's on the move!

2009-04-07T22:55:00.000-07:00

Teag is on the move and crawling everywhere! She crawled for the first time the week before her birthday and has been on the go ever since. Here is a video from the day she first started.

She's mastered pulling up to things now, and has learned how to climb up the stairs. Our house is even louder now as she shrieks with delight at every new accomplishment and Gavin is usually right there with her 'cheering' her on! Here is a video of her from yesterday- crazy girl!

Tommorrow Teagan has a cardiology checkup, her first one since January! She hasn't had an echo since November and I'm more than anxious to see how that little heart of hers is doing. Lately she has been a bit bluer around the mouth and I'm hoping its due to a cold that she's been fighting- and nothing else! Please say a prayer for her that all goes well tommorrow and that her heart function is the same or better!

Party girl!

2009-04-01T10:04:00.000-07:00

Teag's party was a big hit and so much fun, I still can't believe she's already ONE!! We started at the local gymnastics place for some serious playtime and cake, and then headed back to our house for more food and fun! Our theme was cupcakes and I had so much fun picking out pink and purple everything! Here's my birthday princess on her big day!

Here are some pictures from the party:

I love cupcakes, so much so that Trent and I opted for wedding cupcakes on our big day instead of the traditional cake! Teag's birthday 'cakes' turned out so cute and were delicious!

Teag wasn't too sure about her cake until she got a taste, then she was into it!

Gavin was happy to show Teag how its done!
Here's Teag and bff Maddie, now that they're both on the move it was fun to see them play!

Crazy girl!

Teag and Grandma (my mom) T is doing her 'blah' sound- if you've ever seen baby einstein she's trying to act like the dinosaur puppet!

Here's a pic of us with Teag's physical therapist Julie. She's so sweet and T loves her! We were so glad to see her at the party! She has helped Teag go from not using her legs at all in Oct., to crawling everywhere and trying to walk! Amazing... Here's a pic of the boys, they were having a blast! Gav had so much fun playing with all of his friends!

Teag has become quite the 'ham' for the camera! Here's what we call her 'cheeser' face! Silly girl!

Last week we went to Maddie's 1st birthday and this week her family came to Teag's! Like always, so fun to get together with the Allred's and get the heart sisters together! Katie and I have been talking alot about where we were and what the girls were faced with a year ago and its hard to comprehend how far they've come. I was so busy with the party and all of our friends that day that I didn't really stop and take a moment to let the magnitude of the last year sink in. We have been blessed time and time again in so many ways, and we are so grateful for Teagan's special heart and all that she's taught us this year. Thank you to everyone that came out and shared in Teagan's special day! Thank you to all of you who have prayed for her, helped our family, given comments of support and read our story! Here's to many more years of girlie parties, lessons learned and lots of fun!

Birthday Girl!

2009-03-21T09:45:00.000-07:00

Happy Birthday sweet girl!

One year ago today we were blessed with our little baby girl! I have a much longer post in the works that will include pictures from the day and the party. But for now, we'd love to hear from all of you who have followed Teagan's story. Even just your name and where you're from would be great. There are so many of you who have given us support, love and countless prayers this year and one day when we finally turn this into a book- I would love for Teag to read about everyone who loves her!

Happy Birthday Heart Sister!

2009-03-15T00:04:00.000-07:00

Yesterday was Maddie Allred's first birthday! Maddie is Teagan's bff heart sister and the girls were born one week and one day apart- one year ago! Since Maddie is HRHS and Teagan is HLHS we always say that together they have one whole perfect heart! We spent the evening last night at Maddie's party and had a great time. It was so heartwarming to see her ripping wrapping paper, eating her cake, and crawling circles around everyone at the party! With Teagan's first birthday coming up this Saturday, last nights tears of joy were the start of what will most certainly be an emotional week. I'm so thankful for these girls and the bond that they share and for Maddie's mommy who has been there for me when I needed someone who understands.

One of the many benefits of having a heart sister- sat monitors!(We snuck in a sat check during the party, thanks Katie... It says 87- not bad!)

Happy Birthday Maddie Moo! We love you!

Church update...

2009-03-14T23:19:00.000-07:00

The celebration service for Pastor Fred on Friday was amazing and so encouraging. It was streaming live on the church website so I got to see the whole thing! Several people spoke but the one that moved me the most was watching Fred's wife Cindy speak. Her courage, strong faith and forgiveness amidst the heartache was incredible. If you have a few minutes please click on the following links to hear Cindy speak. Part One (13min.) Part Two (2 min.) If you only have a minute, click on part two and watch the end... Amazing!

Tommorrow they are holding church in the same santuary where just one week ago the shooting occured. Please keep the church in your prayers tommorrow that it will be a time of worship and healing for all. The services in the morning will also be streaming live via the church website. If you'd like to watch go to the church website and click on the link! (services start at 8:15, 9:30 & 10:55am central time, *subtract 2 hours for west coast!) Here is a short video Pastor Fred made on the 'ABC's' of knowing the Lord Titled: "Why do you Exist?"

Please pray...

2009-03-08T12:17:00.000-07:00

My family's church back home in Illinois is suffering tremendously after a man came in and shot the pastor during the service this morning. My mom, stepdad and brother were all there but thankfully are ok. Please pray for the pastor's family, wife and children- and for the whole church family today. Here is the link to one of the news stories on the air.

Here is an updated article

We Heart Gracie....

2009-03-03T14:39:00.000-08:00

Sweet Gracie girl, your life touched so many and we will forever hold you in our heart.

March 20, 2008 - March 2, 2009

11 months old!

2009-02-23T22:25:00.000-08:00

As of 2 days ago, Teagan is officially 11 months old. I can hardly believe we're this close to her 1st birthday already! She is getting stronger and louder everyday and growing into quite the spunky little lady! Her favorite things to do right now are: clapping, waving and saying "hi", trying to crawl (she's so close!), sleeping on her tummy, throwing food off of her highchair, screaming when Gavin does, and putting things in her mouth and letting them hang there. (see pics below) She'll stick something in there and then make a grunting sound to get you to look at her and see how funny she is!

She is trying to pull up to things but can only get up on her knees. She's really good at standing while holding on to something but not quite 'cruising' yet.

Eating is still an issue but thankfully there's no talk of her NG tube coming back. Right now she weighs around 16lbs and isn't gaining much at all. She's taking 4 bottles during the day in between 'meals' and I still feed her at midnight every night when I give her last meds of the day. She's probably drinking a total of 20-24 oz total and I'm still fortifying to around 28 cal... I'm not sure yet what we'll do at the 1yr. mark with the formula/pediasure/whole milk decision. She will need more cals than the whole milk alone but right now its a challenge to get her to drink her formula let alone anything else! (thats a whole other post!) Right now part of her formula is covered by the state but that ends after this month leaving us with a bill of $280 a month if we continue with the formula! I put the word 'meals' in quotes because she's not eating much solid food either, not hardly enought to call it a meal! There are certain foods that she likes but she only takes 2 or 3 bites and then doesn't want anymore. Most of the food that we try ends up on the floor. I'm working with our OT therapist trying to figure out some ways to get Teag to enjoy eating more, they're thinking she may have a food aversion in general after all of the tubes, hospital stays, etc... We were joking that she didn't get either side of our families 'eating genes', we all love to eat more than we should! Even though she's not eating as much as she should, she is still happy and thriving so the plan right now is to keep at it and hope that soon she starts to enjoy food as much as we do!

Our last cardio appt. was in early Jan. and our next scheduled one isn't until April! We go in every 1 1/2 months for a sat check to make sure she is doing good and last week she was in the mid 80's! Right now there is no talk of any upcoming cath's but I know all too well how quickly that can change, so we are thankful for her health today and have been so blessed to have had a pretty uneventful last few months (heart wise).

Several of our heart buddies are having a difficult time right now and could use some of those special prayers like the ones many of you have said for Teagan over the months. Gracie is a sweet little girl who was born with a heart defect similar to Teag's and has had a very rough road from the start. She was born the day before Teagan and her blog is one of the first ones I followed and met many heart friends through. Gracie just underwent a heart transplant and the new heart is not working like it should. Please take a minute to pray for her and her whole family, you can follow her blog in the sidebar or here. Also say a prayer for Lindsay and Owen who are both waiting for a new heart. I cherish the friendships I have made with our 'heart buddies' and their families- we'll praying for all of you!

Daddy's Birthday

2009-02-20T22:19:00.000-08:00

Trent's birthday was a few weeks ago but I wanted to share some fun pics that I finally uploaded! He had to work on his big day (of course!) but the kids and I had a few fun things planned. We snuck over to the carpool parking lot and decorated his car before he got there. Here's Gav being 'sneaky'! We decorated and had dinner and cake ready when he got home!Then it was time for presents... To reveal his surprise we wrapped up an appropriate 'outfit' to give him a clue. Can you guess? Flying Lessons! Gav stuck with the flying theme too when he picked out a rocket to give Trent as 'his present'.
Here are the guys last week launching the rocket...The flying lesson got rescheduled twice due to fog, but he finally went last week and we all got to watch! Gav got to walk around the plane with the guys while they did the pre-flight check list and then the kids and I watched them take off and land from inside.
Trent had a great birthday and really enjoyed flying. Getting his pilots liscense is on his 'list' of things to do one day and now he's one lesson closer! I can't wait for him to take us on some fun adventures one day! Happy Birthday Daddy, we love you!

My little Valentine's....

2009-02-15T22:56:00.000-08:00

Here are my little Valentines! We had a pretty quiet day around here on Sat. Trent had to work so we made V-day cards, ate candy and had a yummy dinner ready for daddy when he came home!

Here's a pic of "the face"! She makes the best noise when she's doing this face but I can't seem to catch it on video... Showing off her one and only tooth!

Girls Weekend!

2009-02-07T12:29:00.000-08:00

Last weekend Teagan and I met up with Katie and Maddie to head over to Seattle for a fun girls weekend! We wanted to attend the Heart to Heart support group at the hospital on sunday and decided to make a weekend out of it! We checked in to our hotel near Bellevue Square saturday afternoon and then headed down to Puyallup to meet up with a few other heart moms, Jesse and Mimi. (Luke's mom and Mia's mom!) We headed over to pick up Mimi and got to see Mia for the first time since receiving her new heart! She's doing really well and looks great- so pink!

Here's a pic of Maddie and Teagan with Mia! (They all look a little dazed but they were really happy! ha..)

We met up with Lukes mom at a nearby restaurant and spent the next 2 1/2 hours talking non stop! I was so excited to chat with the ladies I almost forgot we were there to eat! The girls did great in their highchairs and had fun munching on pasta and pizza crust.

Sunday morning we got ready and headed out for coffee and a little shopping before we went over to Children's. We visited with Joshua's mom and Carlee's mom up on the ICU floor for a bit, dropped off doughnuts to the CICU dr.'s & nurses and then headed down to the support group meeting. There were quite a few families at the meeting and it was neat to hear about the new things in the works for the heart program. Its always amazing to see how many other kids are going through the same things Teagan is and it only really hits you when you see them all in one place! I had mixed emotions going back to the hospital for the first time since Teagan's sept. surgery. It was nice going back for a fun visit and not for an appt. or surgery, but it was hard seeing all of the exhausted and sad parents walking around with their bright orange 'parent' tags. I wanted to hug each one and make it better, I don't think that ever gets easier. I kept telling Katie that one day when Teagan is older and I have more time I would love to be able to give back to those other parents in some way. I feel so blessed to have Teagan at home with us and doing so well!

Here are the girlies in the tub sunday morning getting clean for their big day at the hospital!

I forgot to take a picture of them all dressed up :( they were so cute!

A good laugh (or two!)

2009-01-16T23:42:00.000-08:00

Here are a few cute videos of the kids from this week. Those sweet belly laughs can cure any bad day!

Here's gavin playing with aunt Loren's new iphone.

Here's Teagee laughing at Gav...

Cardiology Update

2009-01-10T23:15:00.000-08:00

Teagan had a cardiology appointment on wednesday, the first checkup in 2 months! I'm always a little nervous before our visits and this time was no different. No matter how good she looks or how happy she is, that thought of something being wrong always seems to creep in! They performed an echo first which was interesting. The older Teag gets, the more of an opinion she has about whats being done and this was no exception. The tech was able to get the images she needed though despite Teag's acrobatics and everything looked pretty good! Dr. Herndon said that her overall heart function looks good and that her tri-cuspid regurgitation is still there but for now is pretty mild. He said that its pretty common to have that until the Fontan, and then sometimes even afterwards. The Dr. was so pleased with Teagan that he said we don't need to come back for 3 months!!!

Teag's biggest issue right now is her weight. After having the flu and throwing up for almost a week she lost close to 1/2 a pound. I was heartbroken to hear that after all of our hard work over the last few months. She weighed in around 14 1/2 lbs and is currently 9 1/2 months old. I think that puts her around the 0% for her weight/age. The good news is that since recovering from that bug last week, she's really turned a corner in what she can eat now without gagging. We're doing solids 2-3 times a day now plus 4 daytime bottles and 2 at night. (yes, I'm still feeding her twice at night!) Teag all out refuses baby food most of the time lately so I've just been giving her part of what we're eating. Her latest favs are chunks of avocado, banana, sweet potato, nutrigrain bars, and lots of crackers and cereal. We've also started introducing some yogurt and bites of cheese and she's handling it really well. (I was worried after her issues with breastmilk and needing hypoallergenic formula) She's not too fond of juice but loves her water in a sippy cup at meal time. We're hoping she starts putting that weight back on soon!

Here she is with a mouth full of pasta, so happy!

Sporting her 'yo-baby' mustache

Gavin entertaining us with his 'funny jokers' at dinner

Teag was supposed to receive her 2nd round of synagis shots on friday, but after arriving at the clinic we found out that our insurance company never shipped the medicine. She has to get it within 28-30 days of her last dose or she is no longer immune to RSV so we're headed back on monday to try again.

We've been spending alot of family time together at home lately trying to get everyone healthy and tonight we had a little family pizza party. Gav loves when we order pizza and Teag enjoyed chewing on her breadstick while she watched Gavin entertain. Then it was bathtime, stories, and bed!

Gav loves to climb inside T's little baby tub when they're in the bath together!

Our Christmas

2009-01-03T22:41:00.000-08:00

Christmas this year was so great! We celebrated here at home and then in Twisp with Trent's family. My family survived their 30+ hour car ride from St. Louis and were here to spend the holiday with us for the first time ever! There was snow, gingerbread house making, cookies for santa, tons of presents, and lots of family time! Here are some (well alot) of pictures from the last 2 weeks:

Here's Teagan with Grandpa & Grandma

Here's Gav opening his favorite present, the look says it all!

Seeing this happy face on Christmas was such a gift!

Teagan with Uncle Brian

Teag with Grandma

We thought it would be fun to take Gavin iceskating for the first time this year, and he loved it! He stayed out there the entire 1 1/2 hours we were there (Trent and I took turns sitting inside with Teag) and cried when we had to leave. We ended up going back the next day for more!

Teag has had a few issues these last couple weeks but luckily none of them have been heart related. The week before Christmas she was battling a pretty yucky cold and she finished up a 10 day course of antibiotics just after Christmas for her first ear infection. Now she's fighting some sort of flu bug (or possibly rotavirus) that she started showing signs of on our way home from Twisp. She's been throwing up off and on since last sunday and today is the first day of no 'sickies'! We went to the dr. yesterday to make sure everything was ok and he basically said to just keep her hydrated and get her through it. She has definitely lost her appetite though, and there's talk of the ng tube making an appearance in a few days if she doesn't start eating more. We've tried pedialyte, gatorade, and pediasure (my fav) but she's not interested in any of them! I think because she's had to eat such awful formula for so long, she has no idea what good taste is! We'll see what the next few days hold.... oh, and here's a pic of her latest accomplishment: Her first tooth!

Say, "JingleBells!"

2008-12-20T22:02:00.000-08:00

This year like usual we tried to take a cute Christmas photo in front of the tree to send out with our Christmas cards. The kids had other ideas though, and I had to laugh at some of the ones we ended up with... Above is the best one of the kids and below are the others... ha

The whole family has been passing around a cold and cough the last few weeks and Teagan finally caught it. We're constantly washing, purelling, not touching, etc... but I guess it was bound to happen! I took her in to the dr. yesterday to make sure it wasn't anything that needed medicine and it turns out she has an ear infection. So the dr. put her on amoxicillan sp? twice a day for 10 days. This should also resolve any other sort of respiratory infection she might have or develop from her cold too. Luckily she got her first rsv dose over a week ago, so hopefully we dodged that bullet!

My family is driving out here to Washington for the holidays all the way from St. Louis tommorrow! (They're crazy, I know!) We usually don't get to spend christmas with them because of the distance so its pretty exciting! We're praying they have a safe drive, and that Teag is feeling much better by monday when they arrive!

Snow Crazy....

2008-12-15T23:01:00.001-08:00

We had our first snow of the season last night and today. There's only a few inches on the ground, but it counts right? Today was definitely a snow-crazy day! Teagan had an appointment with the dietician at 8am this morning which was way too early... We would have been on time but as I was backing out of the garage, I couldn't get the door to shut! After messing with it for 10 minutes in the freezing cold it finally closed and we were on our way. It was around 10 degrees when we left so I had the kids bundled up pretty good. So good in fact that Gav had a hard time sitting in his carseat, or putting his arms down! (think Christmas Story)

Later in the day we ran to the pharmacy and then to the grocery store before heading home for the day. As I pulled up to the house the school bus that drops the highschool kids off was parked directly in front of the driveway with the hazard lights flashing. Turns out that the bus had broken down and was unable to move! Parking on the street normally wouldn't be a big deal but our front yard is surrounded by a retaining wall and today had huge snow drifts blocking the whole thing. I had a car full of groceries and sleeping kids, but luckily we have a very nice neighbor who carried Gav while I had Teag and we climbed through the snow and up over the retaining wall to get in the house. This nice neighbor also carried all of the groceries and prescriptions to the front door for me! After getting the kids settled I started working on the biggest issue of the day- the dryer. Somehow a whole pack of blue mint gum ended up in the dryer last night and its not pretty. I spent the afternoon google-ing for ideas on how to get it out and then got to work!

Trent came home tonight and fixed the garage door, I got most of the gum out of the dryer and we ended the day with the kids playing in the tub together! After a crazy snow day, I'm ready for bed!

Elf yourself!

2008-12-12T21:27:00.001-08:00

Send your own ElfYourself eCards

Thanksgiving and Santa!

2008-12-05T22:33:00.000-08:00

We headed up north to Trent's parents house for Thanksgiving last weekend and had a great time. Trent had to work on turkey day so we got together with family and celebrated on Friday. Saturday we took the kids to the 'Christmas at the end of the road' festival in Winthrop and saw Santa! They usually close the pass over Hwy 20 by Thanksgiving, so Winthrop is literally 'the end of the road' until spring! It was fun watching the kids with Santa and listening to Gav talk to him. He wasn't scared at all, and hopped right into his lap. Teag was a little skeptical and kept looking up to see who was holding her...

We have so much to be thankful for this year that its hard to put into words. I'm feeling so blessed to be able to celebrate the holidays at home with two happy, and healthy kids. Thankful for our wonderful families and friends who have helped us in so many ways- we wouldn't have survived these last 8 1/2 months without you! Thankful for thousands of answered prayers, for wonderful husbands, and for laughs/giggles/screams from our two crazy little babes.

My lack of posting lately is due to our crazy schedule lately! Teag has weekly dr. appts. plus 2 days of physical therapy, 1 session of occupational therapy (eating) and a visit from home health. She also has various appts. for shots, dietician checkups, and trips to the pharmacy! This on top of all the regular things that go along with having a 3 yr. old and a baby make for some busy days! She's doing well though and continues to improve with her physical therapy and eating. Washington state is now officially in 'RSV' season so we got the call for Teag's first shot next week. I'll feel a little better once she's started those and built up some immunity.

Thank you all for checking in on us and for your continued prayers, we're looking forward to a fun Christmas at home!

Here's Teag sitting at Nana's counter like a big girl!

Gav and cousin Garrett out for a ride...

Teag can finally put weight on her legs and stand for a few seconds!

8 Months Old!

2008-11-23T12:49:00.000-08:00

Teag turned 8 months old on friday and has been so happy these last few days. Our nights have been a little rough but hopefully once those bottom two teeth pop through things will get back to normal! Here are a few pics from this weekend. Happy 8 months teagee girl!

Big brother, little sister....

2008-11-20T23:27:00.000-08:00

I caught Gav & Teag in one of those cute brother/sister moments tonight and had to share. Teag is finally getting big enough (and loud enough) that Gav has started to notice her more and 'play' with her. He talks to her about his toys, lets her hold his favorite trucks, and wants her to come in his room. I laid Teag on his bed for a minute while putting away the laundry and found them in the bed laughing tucked in together. So cute!

Tonight we went out for dinner with Uncle Cayle and Aunt Loren for Cayle's birthday. Gav loves them both so much and we all had a good time eating way too much bbq! Happy Birthday Uncle Cayle! Here they are 'striking a pose' only Gav forgot to look at the camera!

A brief appearance.....

2008-11-19T14:02:00.000-08:00

The NG tube made a brief appearance over the weekend after 3 days of bad eating and throwing up. Teag just wasn't acting like herself and didn't want to eat very much at all. When I would try and get her to eat more, she would gag and throw up- sometimes just from looking at the bottle! I hadn't been feeling the greatest myself, so I assumed she was feeling like me and just didn't have much of an appetite. She just doesn't have the reserves to go for more than a day or two without eating alot so on Sunday night we put the tube back in. Thankfully, by Tues. evening she was able to eat enough on her own that we were able to take it out and get back to normal. I did enjoy the tube for giving meds though, thats the only part about the whole ng that is nice!
I took her in to the pediatrician on Monday just to rule out anything else that could be bothering her. Its always hard to know if its just a 'normal baby' thing or a heart issue when she seems a little off, and of course I always assume that its a heart issue.... Everything checked out ok though and the Dr. seemed to think that part of her not wanting to eat and crying at night is due to teething. Teething?! How nice if it really is something that simple!

Today we had our scheduled cardiology appointment which I was anxious about after everything thats been happening the last few days. Teag finally weighs 14lbs!!! Well, 14 lbs 1 oz to be exact! This was reassuring after our bad eating all weekend. Her sats were great also at 87 and her heart rate/bp were good too. After seeing all of her numbers looking so good, Dr. Toews decided not to do the echo which bummed me out a little. Its always nice to see whats happening on the inside, and know for sure how's she's doing. He didn't want to change any of her meds and we're not scheduled to go in again until January!

Teag's biggest issue of all lately is still her chest wound from her Sept. 9th surgery. It's still an open wound and not healed over yet. It has started to close some and scar but we still have a long way to go. I change her dressing and clean it daily which isn't fun for her, and lately has been causing her alot of pain. Its so frustrating to still be dealing with this almost 2 1/2 months after surgery. The pediatrician looked at it on Monday and said he wouldn't be surprised if it takes another 6-8 weeks to heal up. Everyone is in agreement that there will be a pretty significant scar left, but until its completely healed nothing can really be done to address that. The plastic surgery department at Children's told us to come back in a year and have her evaluated to see what needs to be done.

Here's miss 'itty bitty' sitting up like a big girl! Physical therapy is definitely making a difference and she can sit up for long periods of time by herself now!

Here's a picture of her chest wound today. Its still pretty bad, but actually much better than it was. The dr. said she was close to needing a skin graft in the beginning, so he's impressed with how its healing..... You can see where her skin has grown in filling the hole that used to be there. Now she just has those two open spots to work on before its healed over.

Itty Bitty

2008-11-15T08:48:00.000-08:00

These were the words of the dietician on wed. when I asked how Teag looked for 8 months. "Itty Bitty" Not exactly what I was looking for considering that we spend most of the day figuring out new ways to get her to eat more! Most of the time Teag is able to weigh in right around the 5th percentile for age but now she's dropped to 0%! She is 8 months old in a week and weighed in at 13lbs 13oz gaining at a rate of about 1/4 oz per day. (They want her to gain 1 oz/day) The plan for now is to focus more on solids and try to give her 2-3 'meals' a day in addition to her formula. I know that putting the NG back in is always an option, but I don't even want to think about that yet...

The last few days Teag hasn't been feeling too well, extra fussy and throwing up 1,2 or even 3 times a day. I'm going to watch her over the weekend and see how she does, so far no fever and she's eating ok. She has a cardiologist appt. on wed. and I'm anxious to see how things look on the inside. Whenever she's acting a little off its hard not to think that its a heart issue.

Monday Teag has an evaluation for eating therapy. Then we'll start going once a week for that in addition to her twice a week physical therapy. She'll also get her first RSV shot of the season next week and see the cardiologist. Busy week!

Baby Mia!

2008-11-10T09:44:00.000-08:00

I just wanted to post a quick note for all of you who follow our sweet heart friend baby Mia. Last night they got the call and right now she is in surgery receiving her new heart!!! Mia has been waiting 4 long months for her new heart and has been such a little fighter. Her mom Mimi is amazing and has been so strong and faithful as they've waited day after day for this day! Please keep Mia and her family in your prayers today that she will continue to be such a little trooper and that her body will accept her new heart! We're so excited for them and so grateful for the other family that made such a selfless decision in giving their baby's heart. Today IS the first day of Mia's new life!!! Yay for answered prayers!!! (you can follow her blog here)

Happy Sounds

2008-11-05T18:52:00.000-08:00

Here's another recent video of Teagan. She's really been expressing herself lately and I finally caught a little bit of it on video! She makes us laugh with all of her new sounds. Teag screams and grunts alot but in a happy sort of way- here are a few of those 'happy sounds'! Sorry its a little blurry!

Santa for President

2008-11-04T09:14:00.000-08:00

Gav has seen some of the campaign ads on tv and wanted to know who McCain and Obama are. So we had a '3 year old' discussion about how everyone is going to vote today for a new president. He thought about it for a moment and said,"I want Santa to be President! Then we can have presents today!" ha...

Here's a short video of T's new 'trick'! Now whenever you ask her a question she smiles and shakes her head no- to everything!

Halloween!

2008-11-03T10:44:00.001-08:00

Halloween was so fun this year! Gav dressed up as a 'Lightening McQueen' race car driver and Teagan was a sweet pea! She actually loved her costume and was all smiles the whole night. Gav was really into trick-or-treating this year and we were out there for almost 2 hours! He had to have a whole conversation with every neighbor that opened the door! He'd say,"Hey guys! Trick or treat-ing!" "I'm a raaaace car driver!"
Teagan had her swallow study on friday and thankfully it went really well! I had to bring a few empty bottles for the barium and they strapped her into a foamy booster seat in the x-ray machine. I fed her barium in different thicknesses to see how she swallowed and then we mixed some barium into a jar of baby food pears and fed her that. She hated the taste of all of it but swallowed enough down for the tech to get the pictures needed. It was determined that she isn't aspirating at all (yay!) and that she has a little reflux. We knew about the reflux and she is already taking Zantac for it so the tech didn't think we needed to make any changes. We will be seeing a speech therapist/feeding specialist starting next week though to see if we can get Teag to eat more. Right now there is no talk of needing the NG tube back in (yay again!) but she's not gaining much weight at all. So hopefully the therapist will have a few new tricks to help us pack on the pounds!

Halloween here we come!

2008-10-30T22:02:00.000-07:00

I was looking back at the last few years of Halloween pics tonight and thought I'd share. This year will be Gav's 4th Halloween! (and Teagan's first of course!) I'll be sure and take lots of pictures tommorrow night, but for now here's a look back at our last 3....

Here's Gav at 1 1/2 months old, 'scared pumpkin' --2005

Dinosaur/Dragon? 1yr. 1 month old--2006

Happy Horse! 2yrs. 1 month old--2007

Teagan has her swallow study tommorrow at 1pm. I'm a little nervous even though she's now eating by mouth without the tube. I'm just praying that everything goes well and that there will be NO talk of going back to the NG tube!

Enjoying Fall, Gearing up for Winter!

2008-10-27T22:46:00.000-07:00

Last week the whole family went in for flu shots. Trent had gotten one at work earlier in the week so he thought he was just going for support. Little did he know that the Dr. wanted him and I both to get a TDAP booster (Tetanus, Diptheria & Pertussis) sp? To protect Teag from Whooping Cough since we hadn't had that shot in quite awhile. Gav was a little trooper and so was Teag- the whole family combined got 6 shots! (Teag and I both got 2, and the guys one each) Now we're all geared up for the winter flu season.... Next month Teag will get her final 4 month shot and her first RSV vac. of the season.

We spent a beautiful day at the park with the Allred's on Friday. The boys loved playing together at the Playground of Dreams and Katie and I had a good chat. We even put the girls in the swings together for the first time! They loved swinging back and forth and watching the crazy boys run around!

This week we've also carved pumpkins, made Halloween cookies, made too many messes to count, and played in the leaves! Tommorrow Teag has a physical therapy evaluation at 8 am. I'm interested to see what ideas they have for me to help with her strength. She has no interest in putting any weight on her legs at all. She loves to kick them all over but won't even try to stand up on my lap or jump in her Johnny Jumper. She's also not rolling over on her own yet- I actually think she might sit up on her own first!

Teag is 7 months old!

2008-10-21T14:07:00.000-07:00

Teagan is 7 months old today! This last month seems like it flew by! Here are a few pics from this week and some new milestones for Teag:

-She's getting much better at taking some solids. She hates rice cereal but LOVES bananas and arrowroot cookies! We've also tried sweet potatoes, squash, carrots, peas (not a fan), apples and pears.

-She's had her NG tube out now for almost a week and we're all loving it! The bottle feeding isn't amazing, but she seems to be eating enough for now. Along with that, she no longer sleeps on a wedge because we're not tube feeding her at night. Now that she gets to lay flat with no tube in, she sleeps like a rock! -Speaking of sleeping.... I give her the last feed of the day around 12 midnight and then let her go as long as she wants until her next feeding. Some nights she'll actually sleep until 7:30am!!

-She is sitting really well in her bumbo seat, and also propped up on the floor with pillows. She can roll from tummy to back and almost back to tummy.

-Her favorite word to babble is 'Dadda'! All day off and on you hear dadda dadda daaaaada!

This week we're supposed to all go in for a flu shot and Teagan is due for her 4 months vaccines. (yes 4 month, we're really behind!) Her RSV shots begin next month and she'll get one per month for the whole cold and flu season until April. The kids and I have passed around a pretty nasty cold since we got back from the wedding. Teag seems to be handling it ok, she's just a little stuffy in the morning and at night. I've been running a humidifier in her room at night and its beginning to feel like the rain forest in there!

Next week I'm supposed to take Teag in for an evaluation to see if she's behind enough with her physical development to need therapy. Also, on the 31st she's scheduled to have her first swallow study. I take her to the hospital imaging department and they have her swallow barium and watch it on the x-ray to see how she swallows. I'm not sure why they're wanting to do it now after 7 months and I'm hoping no new issues come up. I feel like we've finally conquered the NG tube AGAIN and I don't want to ever go back!

Today is also my brother Brian's birthday- the big 21! He gave up 4 weeks of his summer this year to come here to Washington and help me with the kids and house while Trent was working. He's an awesome uncle and we all love him! Happy Birthday Uncle Brian!

Weekend Wedding Adventure!

2008-10-15T09:43:00.000-07:00

Over the weekend we headed out to Orcas Island, WA for Trent's brother Cayle's wedding. Its around a 6 hour drive and then an 1 1/2 hour ferry ride to the island but the trip went well. Gav loved riding the ferry or 'big toot' as he calls it, and the kids did great with the long drive. The wedding on Saturday was beautiful and great sunny weather- just a little chilly! We all stayed in these cute little cabins right on the beach and hung out in the lodge cabin most of the weekend. There was lots of good food, guitar sing-alongs, smores making, rock throwing, beach digging and visiting with family and friends. Teagan did really well with all of the people and noise and I'm so glad we ended up going! Just a month ago while we were sitting in the hospital with her I didn't think there was any way that we'd make the wedding. It was nice for Trent and I too to finally take a little trip with the kids that didn't involve going to the hospital! We've been so blessed with how quickly Teag has been able to recover from her surgeries and bounce back after everything she's endured! Here's a picture of Victorian Valley Chapel where the wedding was:

Me with the girls: Bek, Deni and Jenn
Gav with the groom- Uncle Cayle!

Gav with the bride- Aunt Loren!

The whole Maxwell gang:

Here's the main cabin where we hung out most of the weekend at Beach Haven resort:

Here's a pic of our cabin:

Makin smores around the fire! yum!

Teagan had a cardiology appt. this morning and it went really well. They did an echo and said her Glenn anatomy looks really good. She still has some tri-cuspid regurgitation but Dr. Herndon said that its to be expected and he's not really concerned. Teag's sats were in the low 80's and she was even looking a little pink! We got the ok to pull out her Ng tube for now and see how she does. I also got the ok to let her go a little longer at night now between feedings, yay!!!! No more waking up every 2 1/2 hours to feed her! Its been a long sleepless 6 1/2 months and I'm so excited to see how long she'll sleep on her own!

Fall is here!

2008-10-07T17:00:00.001-07:00

Sorry for the lack of posts this week! All is well and we've been enjoying the official start of fall around here- pumpkin season! Trent and I took the kids out to the Country Mercantile over the weekend to pick out our first pumpkins of the season. You take a hayride out to the pumpkin patch and pick out whatever you can carry! Gav of course was more excited by the tractor pulling us then the huge field of pumpkins. We had a great time just being together as a family and enjoying the cool weather. We also made a trip up to the Allred's house for a fun visit and got Teag and Maddie together again. They're both getting so big, and sooo cute! Here are a few pics of the girls together- they're not really sitting up well yet which makes for some cute cuddling!

Gav turns 3!

2008-10-01T22:29:00.000-07:00

We had a little party for Gavin over the weekend since we were at the hospital for his actual b-day on the 14th. I told everyone not to tell him it was his birthday while we were gone, and that we'd just have his birthday when we got back. I thought that we had been sneaky enough and he hadn't noticed that his party was 2 weeks late. But on saturday while we were out buying party supplies he told everyone,"I'm already 3, but today is my birthday!" I guess he had it all figured out the whole time!

My dad and stepmom ended up being here in town from Vegas and Trent's mom was also here for the party. It was nice to have some family around to help us celebrate because we weren't ready to have any of Gav's little buddies over just yet. After everything Teag's been through in the last few weeks I'm not about to introduce anymore germs! All Gav wanted to do for his party was have a pinata. He picked out a racecar one and it was the pullstring kind. For those of you who haven't partied with a pinata lately, the new thing is the 'pullstrings'. No more breaking it open with a bat (although they have those too) these ones have a bunch of strings hanging from the bottom and one secret string triggers the trap door for the candy. It makes it much easier for the little ones who'd probably lose interest before breaking it open! Gav had so much fun pulling one string at a time until the big candy explosion! He was in kid candy heaven when he saw it raining down on top of him! Within probably 10 seconds he had already opened and eaten like 3 pieces and had a sucker in his mouth!

We lit the candles on his cake and before we had finished singing, he'd already blown them out shouting,"lets get this party started!" ha... I'm a little embarrassed about his favorite present but proud at the same time. When we were at the RMD house for Teag's first surgery back in March Gav fell in love with this realistic kid-size vaccuum they had there and talked about it forever. Needless to say, after opening it and seeing what it was he decided he needed to vaccuum the whole house then and there and not open anymore presents! Now, when I can't find him I just listen for the faint humming of his little Hoover and it leads me right to him!

Teag is doing ok the last few days. Today marks one week that we've been home from the hospital and things are starting to feel more normal each day. She's still in alot of pain from her chest wound and its far from being healed. We had a visit from the Heartlinks nurse today and she weighed in at 13lbs 4oz, sats were 80 and HR 142. We have a family wedding coming up next weekend (uncle cayle and loren!) so we're trying to gear up and prepare for the little road trip. We've gotten the ok from cardio but its still nerve wracking to think about traveling!

We are praying tommorrow for our heart friend Lindsay who is having her Glenn up in Michigan. She is adorable and just a bit younger than Teag, her link is on the left under heart buddies!

Enjoying Home

2008-09-26T22:29:00.000-07:00

We've been home for 3 days now, and it feels so good! There's something almost theraputic about walking into your home again after a few weeks away. Even though we're all still exhausted, its so much easier to handle now that we're back. I'm loving my bed (even though we're not sleeping much) after sleeping at the hospital for the last few weeks!

Teagan had a great day today. Her nights and days are still all mixed up from being at the hospital (I feel like I took home a newborn!) but other than that she's good. She's happy most of the day but tires pretty quickly. Usually after about 1 1/2- 2 hours she's ready for a nap! I started some baby food with her and so far she seems to like it ok. Nothing that pertains to food excites her too much, but she swallowed what I gave her so I'm counting it as a success! She is still relying pretty much solely on the NG tube. She's less interested now in the bottle then she was post norwood! (If anyone has any suggestions that has been there, I'm open!) Ususally she eats 1/2 oz or so and decides to chew on the bottle after that. Sometimes she won't swallow any but she lets her mouth fill up then blows spit/milk bubbles letting it run down her chin... But even if she has to use the NG until her teeth come in and she's eating regular food, I don't care! Thats the least of my worries now, I'm just glad we're home and she's smiling!

Its so great to spend some real time with Gav again. He always seems to get so big while I'm gone! He's been up to his usual antics and keeping me pretty entertained. His uncle Cayle and aunt Loren got him a Lightening McQueen race car driver suit that he's been wearing all the time. He wears it out to dinner and wants to sleep in it! Here's Gav in his race car suit....

He loves to play 'baby' and get in Teag's walker..... I can't believe he fits!

Home....Again!

2008-09-24T16:09:00.001-07:00

We are home....again! Teag was discharged from Children's Tues. afternoon and we made it home around 6. She is already acting like she feels better and is slowly getting back to her normal self. She's still in some pain from the surgery,cath and chest wound but hopefully she won't need her pain meds for much longer. We had our first cardio appt. today already with Dr. Sesslar. Everything looked good (sats,hr, etc...) so we don't go back for a month! Now we're just focusing on getting rid of the NG tube again and letting her enjoy life outside the hospital! Thank you all for checking in on us and for all of your continued prayers!

Still Smiling

2008-09-22T22:20:00.000-07:00

Here's Teagee looking better today, and still smiling!
Today went pretty well for Teag. She's been fussy off and on but its so hard to say whats bothering her- she's got alot going on! She had an echo this morning and her stent looks great! We're just going to be hanging around here for a few days until her swelling goes down and she's breathing a little slower. The docs are being a little more cautious about discharging us after what happened....Teag also had a chest x-ray done to make sure there's no fluid on her lungs. I haven't heard the results yet, but I'm guessing that she's ok since no one has discussed it!

We had a fun visit from Katie and Maddie today that made our day! Maddie had an appt. here at the hospital and then they came up to our room for a bit! Katie is so sweet and brought me a bag of 'hospital survival' goodies! I had so much fun going through everything and enjoying the yummy treats! She also brought some freshly picked apples from their orchard and homemade cookies! I'm so lucky to have such a wonderful friend and heart mom to lean on! Thanks so much Katie- you and Maddie were the bright spot of our day!

Here's Teag chillin in her cute new socks from our goodie bag!

Look at this huge grin I caught this evening, such a silly girl!

Here's a pic of me with Maddie and Katie. I definitely have my 'hospital face' goin on (tired, pale...) but how cute do they look?!

Here's Maddie hangin out in the bed with Teag. I don't think T meant to punch Maddie in the face, ha... they love each other! Or atleast they will when they can finally play together outside of the hospital in a few weeks!

6 months old! What a journey....

2008-09-21T21:07:00.000-07:00

Our little miss is officially 6 months old today!!! What a journey it has been so far... I am amazed every day by Teag's courage, strength, and ability to smile after all that she's endured. I'm planning on turning this blog into a book someday for Teagan, so this next part is for you little bug:

Happy 1/2 year birthday sweetheart, you're mommy's little miracle. You are AMAZING! You've given me more joy in these last 6 months than I could have ever imagined. I have grown and learned so much from you. You teach me about patience, love, courage, strength, endurance, gratitude and so much more every day. Mommy loves you so much and I'm so proud of you- you're my angel. Look how much you've fought through and overcome in your first 6 months! Your big brother and your daddy both ADORE you! You've stolen all of our hearts, and many more.

Teagan has had quite an exciting first 6 months of life. Here's a little recap and a few milestones:

-Surprise diagnosis at 12hrs. old

-Two life flights over to Seattle Children's (she likes to ride in style!)

-2 heart catheterizations, one stent placed

-2 open heart surgeries

-54 days lived at Children's hospital

-2 ER visits

-4 ambulance rides

-Way too many trips to the dr./cardiologist (atleast 30)

-doubled her size since birth (she's now almost 13lbs)

-Wears 3-6 months clothes and size 2 diapers

-Likes to suck her middle and ring finger together with her others pointing outward "rock star style"

-Smiles, jabbers, DROOLS, spits, blows bubbles, and coughs to get my attention

-Rolls side to side but not quite over yet

-Favorite toy is her 'bunny boo' which she thrashes back and forth to make it rattle

-She's in love with her brother and daddy, she lights up and tries to grab their noses when they get near herAs you can see, tonight Teag is still very swollen. We had a pretty good day today overall, just not alot of fluid loss. Her sats are better- even in the 80's at times and her heart rate is good. She's breathing faster than normal but the dr.'s are saying that its because of all of the excess fluid. The plan for tommorrow is to have an echo done to check on the flow through her newly stented svc. She'll also have labs done and get a visit from the plastics dept. to look at her chest wound. They're telling us that as soon as she starts to look more like herself we should be out of here- maybe tues or wed...

Cath Update

2008-09-20T16:12:00.000-07:00

I was able to go back and see Teagan around 11:30 this morning in the recovery room. Dr. Jones talked to us and said everything went well and that there was a definite narrowing right where the superior vena cava (svc) was connected to the pulmonary. There was no evidence of any clotting, just some scar tissue that had already started to form and close off the opening. He explained it sort of like squeezing a drain shut- the blood was flowing up to her head and then when it went to 'drain' down into her pulmonary, the opening was too small to accomodate the flow. Here are a few pictures from her cath:

The picture above is what they saw when they went in.
Here above is an explanation of what you're looking at. The blue arrows are pointing to the area where she had the blockage. The opening should be much bigger here to allow for better blood flow. You can also see the small tube of the catheter at the top left, and her feeding tube that curves down through the whole pic. I also pointed out a small narrowing she has on the right side of her pulmonary where her Sano shunt was taken down during her Glenn.

Here's a pic of the mesh shunt that was placed at the site of her narrowing. You can see that they were able to double the size of her svc opening. Also if you look to the right where she had some other narrowing from the shunt takedown, it has popped back open due to the increased flow! Its so amazing what they are able to do with the catheters instead of having to open her back up again. Here's a pic of our sleeping beauty this afternoon. Teagan's swelling is slowly starting to go down but she is still really puffy in her face and completely exhausted. They're giving her iv fluids for now until she feels like eating.

Back at the hospital.....

2008-09-20T09:05:00.000-07:00

Teagan woke up friday morning with extreme swelling in her face and neck. We took her in to our local pediatrician and then to the hospital for an echo. They're thinking that she might have some blockage at her Glenn sight where they just did the repair. This would cause a restriction of blood flow from her head to her lungs and thus the swelling. We were airlifted back to Children's hospital here in Seattle last night and scheduled for a cath this morning. We handed Teag over around 9:30am to Dr. Jones and his team who will go in and try to figure out whats causing the blockage. We're hopefull that it can be fixed via cath with a balloon or stent and that will fix the swelling. I'll update later when we know more. Please say a prayer for our little bug this morning!

Discharged and HOME!!!

2008-09-18T22:32:00.000-07:00

We were discharged today around 11am and made it home about 5pm! I'll write more tommorrow as I am exhausted from the day but I am so thankful to be writing this post from HOME! God is good!

Post-Op Day 8

2008-09-17T14:34:00.000-07:00

Whew... After all of the craziness over the past few days, I think things are starting to go in the right direction. Teagan has been able to rest and keep most of her feeds down the last 2 days and her sats are improving without oxygen! The surgeons have agreed to call off the idea of doing a heart cath tommorrow and if everything continues to go well today- we get to go home tommorrow!!!!!!

As I looked back over the last few posts I can't help but feel bad about how negative they sound. Things have been so stressful and not going the way we wanted and its easy to get stuck in that mode. I thought it might be nice to write about some of the things I'm thankful for in the midst of all of our frustrations.

I am thankful for a heavenly father who continues to be faithful in healing Teagan and giving Trent and I the strength to get through each day.

I am thankful for the wonderful 'heart moms' like Katie, Angie, Mimi and many others who have given me so much encouragement and been willing to listen to me complain and vent about all that is happening.

I am thankful for the strong, brave and beautiful little girl that Trent & I have been given and couldn't imagine life without.

I am thankful for an amazing son who makes me laugh, cry & beam with pride when he shows me his new 'tricks' or kisses his 'ligglely' on the head and 'keeps her safe.'

I am thankful for a wonderful husband who has done nothing but make me laugh (outloud at times) and been so strong through this whole thing.

I am thankful for our wonderful families who have prayed, encouraged, and held us up when we were about to fall apart.

I am thankful for our wonderful moms who take care of our sweet 'Doogie' while we're away and make him feel happy, safe, and worry free!

I am thankful that even if Teagan's chest wound does leave a scar atleast the shape is appropriate- a heart!

I am thankful for the Dr.'s and nurses here at Children's who have done so much for Teagan and for us. We couldn't imagine life without her, and they help make that possible!

Post-Op Day 7 (tuesday)

2008-09-16T10:36:00.001-07:00

I'm sitting here trying to think of how to paraphrase all that has happened in the last two days... Trent ended up coming back yesterday to help me when he heard all that was going on.

Teagan had been doing really well up until saturday afternoon and everyone has been trying to figure out whats causing her to decline. They did an echo yesterday and after initially thinking that everything looked good, the surgeons came back and said that Teag might have some pulmonary narrowing at the Glenn sight. (where they attached the svc to the pul.) They're not sure if its an issue or not because the echo never really gives a clear picture of the pulmonary anyway. Also, if it was a true narrowing then Teag's sats would be low and stay low and she wouldn't be responding to oxygen. (Teag's sats are all over the place high & low, and she definitely responds to oxygen)

Also, T is definitely having some 'digestive issues' meaning- nothing is happening! She eats and eats but nothing comes out due to the thick 30 cal formula plus the oxycodone. She also has no urge to use any of her muscles down there as she is still very sore from surgery. So yesterday she began throwing up and I'm positive its due to us just packing her full. We're now giving her some meds to help move things along and she seems to be doing better.

All of this on top of T being absolutely exhausted is (in my opinion) why she isn't doing too hot with her sats, feeds, fussiness ect... The docs left last night wanting to do a cath to 'take a look' at her pulmonary and possibly balloon it if necessary. They also wanted to start an iv last night 'just in case' she needed fluids in the night if she continued to get sick. I wasn't having any of it! By that time I was so tired of Teag being but through any more pain or discomfort to 'take a look' or 'just in case' when I knew that this girl just needs to poo and sleep! So the plan was to watch for 24 and schedule her cath for later in the week- which could be cancelled.

We started feeding Teag through her ng tube (and meds) at 90mls/hr. every 3 hours. Last night she took every feed without throwing up and she's also been off of oxygen since 5pm last night and for the most part is doing ok. Her sats dip into the upper 60's and low 70's when she's in a deep sleep and when she's awake they're in the upper 70's and even low 80's. The docs did rounds a few hours ago and saw how well she was doing. (even though she was screaming while they were in here) So now the plan is to watch for another 24 and if she's not throwing up and is able to maintain her sats then we might get to leave on thursday and possible come back in a few weeks for a cath if needed! Otherwise, the cath is on for thurs. and we'll go from there.

Today we are praying that Teag is able to 'go' and also keep her feeds down. We're praying that she can keep her sats up on her own without oxygen and that she can be as comfortable as possible. Please keep her in your prayers today and this week!!!

-oh, one more thing. I sat down yesterday with the head of patient/family relations here at the hospital to discuss all of Teagan's 'hospital wounds' and express my frustrations about everything that has happened. It was so nice to finally feel like I was talking to the right person! I emailed him pictures of all of her injuries and wrote up a report. He is going to get back with us this week, and is also going to present all of the info to the head dr.'s and nurses here so that there is an awareness about everything. He was very understanding and compassionate and at the end even offered to buy us dinner! I told him how concerned I was with Teagan's sleep and how we were frustrated about getting another roomate yesterday when there were open rooms down the hall. So last night they made it possible for us to move to a single room where we can't get a roomate!

Things are definitely much better today here in our cozy quiet single room!

Here's how I left Trent & Teagee last night. All tucked in together ready for bed! She loooves her daddy and was so happy that he came back yesterday! I went across the street to the RMD house to sleep for a few hours and for a much needed shower!

Post-Op Day 5 (sunday)

2008-09-15T12:07:00.000-07:00

Sorry there's no update for yesterday (post-op day 5) but I was exhausted after a long day and don't know if I could have put my frustration into words. These last 2 days here have been horrible. Teagan has been put back on oxygen because she couldn't maintain her sats and today is inconsolable. The hardest part about being in the hospital is the constant disruption of sleep and I've never seen Teagan more sleep deprived. I think that everyone was a little too eager to have her take all of her feeds and meds by mouth (she hasn't done this at home for over a month) and it completely exhausted her. Her wound on her chest is painful for her and now she has a large blister that wraps around her foot from the tape/sensor they use for the sat monitor. These things combined with the iv infultrate wrist ordeal last time have basically pushed me to the limit in my patience with the different staff and personnel around here. I loved our care in the ICU but it always seems like these 'fluke' things happen to Teag the longer we're here and I'm so tempted to unhook her from everything and run!

I definitely expressed my opinion yesterday, (hopefully to the right people) and we now have a new plan of action. We're going to leave Teag off of oxygen for 24 hours and if she does ok then we'll get to leave. This morning they did an echo around her chest wound and were able to see enough to know that her heart function is good. They also did a chest x ray that showed a little fluid but nothing major. I know that once we get her home Teag can rest and heal the way she should be so I'm praying that we're out of here tommorrow. I've been doing all of her care here in the room (feeds, meds, dressing changes, etc...) just like we'd be doing at home.

Sorry this post is so horrible. I'm just plain exhausted and ready to be out of here. After missing Gav's birthday yesterday and being away from him for almost 2 weeks I can't wait to get him back in my arms! Please pray that Teag will be able to stay off of oxygen so we can get out of here and for patience for Trent and I as we work together with the staff here to care for our little bug!

One good thing that happened last night after no sleep at all. The nurse brought in a real hospital bed and made Teag a little spot next to me so we can sleep together and I can comfort her better. Here are a few pics from yesterday: (again of her wound- just a warning!)

Post-Op Day 4

2008-09-13T21:55:00.000-07:00

Teag is getting better every day! I'm so proud of our little hero, she's such a fighter and refuses to just lay around and act sick. She did well enough last night to come off of her oxygen today! No more nasal cannula on her face to pull on! I left the stickers on her face though, those things are stuck pretty good! I'm waiting until she's in a really good mood before I have to peel them off...

All of her numbers look great today and I even got a little smile out of her! Our nurses were great and brought a really cool mobile to hang on her crib. She also had fun with her new toys and balloon.

The only thing thats keeping us from being discharged is the raw patch on her chest where they ripped off her skin after surgery. I still haven't heard exactly what they had stuck to her that was able to do this much damage but I plan on finding out. They're treating it similiar to a burn and it actually looks like one. The plan is to keep the area wet so it can heal more efficiently. It looks so bad and painful, and I'm so frustrated that these things keep happening to her! It has absolutely nothing to do with her heart and without this issue, we'd be going home today!

Tommorrow is Gavin's 3rd birthday and I'm soooo heartbroken that we won't be home to celebrate. The good news is that he doesn't know that tommorrow is the 'big day' so we're going to have a big party for him when we get home....

My friend Bek came down to the hospital today and sat with Teagan while I went to shower and grab a bite to eat. She's scheduled to have her first baby on wed. and she's going to be such a great mommy! Teagee loved her and you can tell Bek is totally in 'baby mode'! Thanks Bek for loving on our little bug for me today!

Below are some pictures from today... I'll post a pic of Teag's wound at the bottom, so don't look if you have a weak stomach. Just a warning- its gross!

Here's Bek with Teagee:

Nap time!

-and here's what is keeping us at the hospital....yucky and so frustrating!!!!

Post-Op Day 3

2008-09-12T22:05:00.000-07:00

A little more bright-eyed today!

We're still here in our cozy little room on G-4 doing pretty well. Last night was definitely our roughest yet with neither Teag or I getting much sleep. She's pretty much just miserable until her swelling goes down and her chest heals more. She's still on oral feeds and all oral meds but its hard to get her to eat when she's so tired. Her one iv that was left in her foot ended up coming out today. The nurse went to flush it and thought it was blocked, but after messing with it saw that it was ok. She decided to re-tape it though and in the process ended up pulling the whole iv out of Teag's foot. The good news is that now she has no more lines in, bad news is that they may have to start a new one if any iv lasix is needed in the next few days. We're hoping not! Today Teag was a little more like herself and not so 'googley eyed'! She almost smiled a little and it made me feel good to see a glimmer of our fiesty girl coming back.

Theres no plans in place for us to leave this weekend but we'll see. Teag is still really needing the oxygen to keep her sat's up and she's still pretty swollen. The dr.'s mentioned maybe monday we'd be headed out of here if those two issues get better over the weekend!

I went out to the car today to grab a quick bite to eat and it wouldn't start! I had to laugh because it always seems like these things happen when we're here at the hospital. A nice family jump started my car and I was able to go get a new battery so all is well. Just a little added excitement!

We received a few gifts today so I took some pics of Teag with her new toys! Thank you so much to Maddie and her sweet family for the gifts and balloon! The Giraffe is so cute and fitting for our stay on the 'giraffe' floor and Teag loves watching the balloon and playing with/eating the strings...ha. Also thank you to Mia's mom Mimi for the adorable elephant! I caught Teag sucking on the trunk today!

Post-Op Day 2 Update....

2008-09-11T21:06:00.000-07:00

All set up in our new room on the floor!
We're on the floor! Its sad but exciting at the same time! I hated leaving the CICU staff and our friends over there- but this is one step closer to being sent home! We're back on G-4 again but we still have a nice window view. We're in a shared room but as of tonight we don't have a roomate yet! I'm going to sleep here with Teag and hope to get a few hours in.... we'll see. Teag is doing well, just really miserable still. The meds and all the bottle feeding is making her really gaggy and she has a killer headache. Poor girl!

Post-Op Day 2

2008-09-11T10:19:00.000-07:00

Here's a view of our 'corner suite'!

So I know I just posted, but I'm bored so I thought I give a mid-morning day 2 update! Teag had a pretty good night last night, she got sick during a feed around 1am but the nurse thinks she gagged on her meds...She's still pretty sleepy and really swollen and sore, although she's much less 'out of it' than yesterday. This morning she's had her eyes open a little and she just stares at me like 'what is happening right now?'. They just took out her central line in her left groin and her arterial line in her right groin and she's much happier. Since both of those go into the arteries, they're stitched in to her skin and super taped up. So once those were out she's been sleeping better. The only line she has now is one iv in her left foot. Thats it! She's still on O's, her leads are stuck everywhere and she has her sat probe, and a temp. probe on her. Her incision looks awesome, and the 'skin burn' patch looks the worst of anything. Trent and I were joking that she always has to deal with some 'extra issue' and we're hoping that this time the whole skin burn patch is all. They did rounds this morning and said they want to move her to the floor later today! I'm excited, but also so sad... It means leaving Mimi up here alone again and the other sweet families. Plus like I said before, we loooove our nurses! I asked to stay here another day and they all laughed at me...

Teag's blood pressure is still really high, but they said thats expected after the Glenn. She's off of the morphine and switched over to oxycodone, she's also off of milrenone and on the captopril instead. They just got that big 'tree' of med pumps out of here because she's on all oral meds now!! She's also been eating really well so far and we haven't put in the NG tube yet. Every feed we've offered her she's drank in about 2 minutes, but this is mostly because she's starving! Last night around 9pm she drank 120ml!!!! She's never eaten that much at one time, let alone by bottle only so I was so happy! We offer her 90ml every 3-4 hours now and they seem happy with what she's eating so far.

Thank you for all of the prayers, thoughts and messages these last few days they are definitely being felt! Teagan is doing so well, and we couldn't be happier with her progress. We are blessed to have such great friends and family helping us on our journey here and at home!

Here's Teagee this morning- sad, grumpy, but still beautiful!

Loving the CICU....

2008-09-11T08:52:00.000-07:00

I tried to post a few pics last night and update about the rest of the day but was unable to get connected to the internet! Anyway, the rest of yesterday went pretty well. They took out all 3 of Teag's chest tubes around 6pm last night and her pacer wires! She also had her catheter taken out yesterday and lost her 'brain sticker'. So at the end of the day she had her lines in both groins, and one in her foot- but thats all. She is still on 1/2-1 liter of O's, her morphine drip, and milrenone drip. Here are a few pics of our sweet girl yesterday afternoon...

We are absolutely loving being here in our 'corner office suite' in the CICU. We ended up getting the coveted corner room with windows all around! (cicu stands for cardiac ICU unit for anyone wondering) Our experience here at the hospital this time has been so much more enjoyable. Not only because Teag is doing so amazing, but just seeing the familiar faces of the dr.'s/nurses and also knowing what all the numbers and 'hospital talk' means makes it so much easier to handle. I had the best day yesterday chatting with all the nurses and meeting so many wonderful families here with their little heart babies. I am continually amazed at the stories some of these families have and how strong and caring the parents are. We've had great nurses both days and nights including our fav. NICU nurse Jenn who had Teagan the first week after she was born- right before her first operation. I was thrilled yesterday when she told me that she was training on the cardiac side, which means we might get her for the next surgery! We also love Mari, Ingrid, Betsy,Katie and so many others... The way that they talk to these babies and love on them just as much as the moms do is so awesome! I've been staying at night until around 11pm and then sleeping at the RMD house and coming back around 7am. I figure I might as well sleep now while Teagan is so well cared for because I don't like to leave her once we're moved to the floor...

I had the chance to chat with Mia's mom Mimi yesterday and it was so fun! Her baby Mia is adorable and currently waiting for a heart here in the CICU. I had read Mimi's blog and knew that they were here somewhere so I walked around the ICU yesterday until I found their last name on the door! Mimi is so sweet and we had the best time popping into eachothers rooms to chat during the day yesterday. (they're just a few steps down the hall) Its so fun to talk to other moms who know exactly what you're going through. (and who are just as sleep deprived as me!) Its like a club that we all belong to and sometimes being here at the hospital feels like living in the college dorms again. You can walk down the hall and see all the moms in their pj's hanging out in their little rooms sustaining themselves on cafeteria food and lots of coffee!

I also talked to a sweet family from Montana who's little boy 'Drew' is in having his norwood right now. They have 2 other little girls with them and they are all staying together in one room over at the RMD house. On their drive out here from Montana their car broke down in Idaho and a guy from the dealer where their car was towed drove their whole family all the way to Seattle in his own car! Once their car is fixed in Idaho, the same man said he could drive their car back here to Seattle for them and then fly back to Idaho! Pretty awesome huh? Its wonderful people like that man who make these horrible times so much better! Please say a prayer for Drew today and for all the babies here in the CICU!

Post-Op Day 1

2008-09-10T09:30:00.000-07:00

Our sleeping beauty...

Extubated and feeling much better!Teagan had a great night last night resting comfortably and pretty sedated. This morning however, they held off on some of the sedatives so she could wake up more and be extubated. When I arrived around 7am she was thrashing back and forth and very mad! They said its the worst right before extubation because they're pretty awake and not appreciating the huge tube down their throat. Once the Dr. gave the ok, they extubated her around 8am and also took out her NG suction. Right now she's on just under a liter of oxygen to help keep her sats up while she adjusts to breathing on her own and she's satting in the low to mid 80s.

The plan for today is to offer her a bottle in a few hours which should make her happy. They will also probably take out atleast 1 or 2 of the 3 chest tubes this afternoon along with her pacer wires. She had some moderate draining out of her center chest tube so they might leave it in for one more day. They also plan on taking out her catheter and her 'brain sticker' when she wakes up. Right now she is resting and sucking like mad on her binky so they don't want to mess with her! There's talk of possibly moving to the floor tommorrow if they can wean her off the milrenone and onto some captopril. They'll also want to wean her off morphine and onto the oxycodone. Everything is definitely moving in the right direction and Teag is much much happier now that she's extubated!

Trent is at the local Urgent Care right now because he's having some serious back pain. He could hardly get up out of bed this morning! Please say a prayer for him also as he is supposed to return to work on friday and right now can hardly walk.

Post-Op pic...

2008-09-09T23:02:00.001-07:00

Here's a pic of our little beauty as we were leaving tonight. She was comfortable and dreaming away!

Update 2

2008-09-09T20:17:00.000-07:00

I called the ICU around 4:45 after not receiving a page for awhile and they told us that Teag was off bypass and being 'packaged up' to move to the ICU. There was some confusion with the whole paging system and we thought that her surgery was taking much longer than expected. As it turns out, once she was on bypass her actual repair only took around 45 min. Surgery was started at 1:30, she was on bypass at 3:15 and off by 4:00. Her chest was closed and they moved her to the ICU by 5:30.

The anesthesia team had a really hard time getting her lines in and it took almost 3 hours to get her prepped and ready and this is what delayed the whole operation. Teag has always been a 'bad stick' when they're trying to get blood draws, etc... and when she was hospitalized for the last surgery they had a hard time as well. They were unable to get an IJ line in (central line in her neck) but they tried several times so she has a nice mark there. They were also unable to get any lines in her hands/wrists so she has several marks there as well. She ended up with a line in each groin (one is her arterial line, the other is her central line) she also has a peripheral iv in her left foot. The good news I guess is that her hands are free to suck her fingers when she's able to.

Dr. Permut met with us before we went back to see her and he said that her surgery went really well. There was a fair amount of scar tissue to get through but once he was able to get to the heart, things went quickly. Dr. Cohen (the lead cardiac surgeon here) also scrubbed in on her surgery once things were started and he said that Dr. Permut did the cleanest Glenn disection he'd ever seen! The only negative aspect that happened was when they were closing her up. When they have the chest open during surgery, they cover the surrounding skin with a sticky protective sheath. Well when they went to take the sheath off, it ended up taking part of her top skin layer with it leaving her with a nice patch of raw skin that looks like a bad sunburn. Poor girl! So they have a wet looking bandage just laying over the area right now to help it heal.

I tried to prepare myself for what Teag would look like post op but I don't think that ever gets easy. We were allowed in to see her around 6:30 and it was heartbreaking. She looks good for what she's been through today, but still tough for mommy to take. She is still intubated (through the nose) with an NG tube in the other nostril for suction to keep her tummy empty. Her chest is closed with no outer stitches and her incision looks really good. (way better than last time) She has the wet bandage with gauze over it where the 'sunburn' rash is. This time she has 3 chest tubes in- left, center and right. (last surgery she only had 1 in the center) She has her art. line and central line in her groin area, and then the one iv in the left foot. They also left in her catheter for now to measure her urine output. She is pretty swollen from the mid-chest up and also her left leg is really swollen. They said that because the central line is in the main leg artery that its blocking some of the blood flow and thus causes some swelling.

She's asleep now, but she has been in and out of 'awakeness' and in some visible pain. Since she got out of surgery so late in the day the plan is to try and extubate in the morning. They're weary of doing it tonight mainly because there's just not that many people around if something were to go downhill. Since she will be intubated overnight though, they're able to give her more pain meds and keep her as comfortable as they can. I told the nurse that Teag is fiesty and she said that it was obvious with the way that she was trying to wake up. Its a good sign though that even with everything going on she's still our little sassy girl! When I rub her head and talk to her she opens her eyes but you can tell that she's uncomfortable. So Trent and I have been taking turns holding her little hand, and she's been squeezing it really tight! All of her numbers are really good right now and everyone is pleased with how she's looking. We'll know alot more once she's extubated and breathing on her own again.

Thank you to everyone who has checked in on us today and kept Teagan in your prayers. Her surgery went as well as expected and so far she is doing great! I'm not quite ready to post a pic of her yet, even though she's looking beautiful to us! Hopefully my post tommorrow will be of her sweet face with no tube! Here's a pic of her and I this morning before we headed to the hospital. Thanks again to Nana for the 'Team Teagan' gear!

Update

2008-09-09T16:17:00.000-07:00

Teag went on bypass around 3:15 and the real repairs were beginning...Everything is going fine, they said it just takes awhile to get going...

Surgery is underway....

2008-09-09T15:07:00.000-07:00

We checked in here at the hospital around 10am and handed Teag over at 10:40. They were scheduled to start putting her lines in around 11:15. We received a page around 1:15 that she was all prepped and they were starting. We were told that it takes a long time the 2nd time around to get through the scar tissue and get her on bypass... I called the ICU around 2:45 and they were still getting her prepped for bypass but they were almost there. Once she's on bypass we'll get another page that they're actually doing the 'work'. (connecting her svc, etc) Then another page when she's off bypass, and finally the 4th page when she's being moved to the ICU. Right now they still haven't confirmed that she's officially on bypass, and its taking longer than Trent or I thought. I had the ICU desk call the OR and they said everything is going fine and that sometimes it just takes awhile to get everything hooked up. They said once the actual 'work' starts that the rest should go pretty quickly. Please keep those prayers coming! I'll update again when we know more.

Tommorrow's Details...

2008-09-08T22:08:00.000-07:00

We received a call this morning with the details on when to arrive for tommorrow's surgery. I wasn't sure if we were going to be admitted today or not, so when we got the call about tommorrow I was so excited to be able to keep her with us one more night! We got bumped to second case so now instead of reporting at 7am, we're supposed to check-in at 10am and they will take her around 11:30. Surgery is scheduled to start around 12 or 12:30 and is going to last around 3 1/2 hours. Most of this time is getting Teag prepped (lines in, anesthesia, bypass, etc...) the actual surgery shouldn't take very long. Dr. Permut said the longest part of the operation is getting through the scar tissue, etc.. left over from the 1st surgery.

The Dr. said that her surgery is a pretty typical 'Glenn' with no additional work needed. He'll take down her Sano shunt and connect her superior vena cava to her pulmonary artery. This will connect her upper body blood flow directly into her lungs. He said to expect Teagan to be swollen from the mid-chest up and for her to look a little blue right after. But once her body adjusts to the new blood flow, she should look alot pinker! Depending on how the surgery goes, they may extubate her a few hours after, or they may decide to wait until wed. morning.

Trent and I are actually feeling really good about everything this evening. I'll probably be emotional tommorrow handing her over- I don't think that ever gets easy. But we know that Teagan is strong and our little fighter! We are comforted knowing that she'll be in God's hands tommorrow when she's not in ours. He's seen her through so much already and we know that he has great things in store for her! Please keep her and us in your prayers tommorrow! Teag's uncle Shaughn and aunt Deni are going to join us here at the hospital as a part of "Team Teagan" and I'll update as often as I can! Thank you to all who have been checking in on us and leaving such wonderful comments. We read all of them and are truly comforted knowing how much love and prayer is being sent our way! We love you all!

Great Day!

2008-09-07T22:41:00.000-07:00

What a great day! The weather here in Seattle today was awesome, so we decided to take Teagan out for some fresh air. We headed over to Discovery Park to walk the trail and see the water. Teagan has gotten more one on one time with Trent and I this weekend than ever. I love that we can give her so much attention right now before her surgery. Here's us overlooking the sound:

Teagan's first view of the beach- a little windy!

The next pic might need some explaining: Regardless of how we plan our day, it always seems that we need to start a feed while we're out. So we found a beautiful bench overlooking the water and fed Teagan in the shade. Trent found a great spot in the tree to hang the bottle! (look close!)
All fed and so happy to be outside!
The trail that we walked was lined with blackberry bushes and everyone was stopping to pick and eat them. So yummy!As requested, here is a picture of our room here at the RMD house. We feel so lucky to have so much space this time in the newer building!

Here's a small pic of Teagan in the lobby of the RMD house.

Too funny...

2008-09-06T23:01:00.000-07:00

Tonight as we were walking back into our room from dinner we actually got Teagan to laugh out loud! I had Trent grab the camera so we could catch it on video. Teag has never laughed when we try to play peek-a-boo until tonight and it was so cute to see her so happy!

About Teagan's heart...

2008-09-06T15:47:00.000-07:00

Now that the second surgery is upon us many of you have been asking,"what exactly are they going to do this time?" and "what is Teagan's condition called?" So here's a little info on her special heart and about the upcoming surgery.

Teagan's 'technical' diagnosis is called Critical Aortic Stenosis with mitral stenosis, and left ventricle endocardial fibroelastosis. Basically the main valve in her left ventricle (the aortic valve) is really small (stenosed) and doesn't allow much blood to go through. In turn, her left ventricle didn't get to pump like it was supposed to so it is smaller than normal and the walls are very thick (fibroelastosis). Her mitral valve is also smaller than normal because of the deformed ventricle. She is being treated as if she had Hypoplastic Left Heart Syndrome but she has a left ventricle (its 75% normal size) and her aortic arch is fine. (Kiddos with HLHS usually have next to no left ventricle and usually have aortic arch narrowing)

Here's a rough sketch of what her heart looks like:

Basically, the left side of Teagan's heart will never be able to pump blood to her body due to the thick walls. So she is having a set of 3 surgeries to 'replumb' her heart to work only using the right side. (shown here on the left) The first surgery she had at 6 days old is called the Damus-Kaye-Stanzel procedure with a 6mm Sano shunt. A major blood vessel to the body (aorta) was constructed from the base of her pulmonary artery and the aorta, and a small tube (the shunt) was attached from her right ventricle to her pulmonary artery to ensure blood flow to the lungs.

This surgery is only a temporary fix until Teagan could grow bigger and the pressures in her heart could adjust. Now that she's outgrowing her shunt its time for phase 2 the Bi-Directional Glenn. In the Glenn, the superior vena cava (major vein from the systemic circulation to head/upper body) is connected to the right pulmonary artery. This reduces the workload of the heart since it has to pump less blood to the body, not the lungs anymore. Now blood just flows to the lungs instead of being pumped. Her Sano shunt will also be taken down in this surgery. This will take a large amount of work away from her heart and allow her heart to relax a bit more. Right now her right side is doing the work of the whole heart so it is swollen and working very hard! The third stage The Fontan around age 3-4 will connect the lower body blood flow to the lungs thus giving her heart even more of a break and letting it only pump oxygenated blood to the body from then on.

I've been trying to focus on the positive side of things when thinking about the surgery tuesday. Don't get me wrong, its still gut wrenching to know what she'll be going through. But knowing how much better she will feel afterward and how much it should help her is reassuring. Each surgery is one step closer for her to being a happy, energetic, and healthier little girl and for that we are so so grateful!

Better results

2008-09-06T14:20:00.000-07:00

I talked to the nurse later on last night and Teagan's new labs came back much better. Her potassium is still a little elevated but her levels were half what they were on the first draw. So we get to spend the weekend together here at the RMD house resting and relaxing. I'm not sure yet if we're going to be admitted monday evening or just show up tuesday morning, I'm just so excited to have Teag with us here for a few more days!

Crazy Pre-Op Day....

2008-09-05T20:25:00.000-07:00

Whew.... today was crazy...The good news is that we are back in our room at the RMD house after 10hrs at the hospital- and Teagan wasn't admitted!

We made it over to Seattle yesterday and got checked in to the Ronald McDonald house. This trip we managed to get a big room in the newer house up the road from the hospital and it is awesome! I didn't even know what the RMD house was before we had Teagan, and now its such a life saver when you're away from home for so long! So next time you drive thru Mc D's- drop a few coins in the RMD charities box... they do wonderful things!

Now for our day... The plan was to check in at 9am to be admitted and have all of our pre-op testing done. I didn't understand why they wanted to admit her 5 days early for us to just sit in the hospital room around all the germs, etc... and be miserable! So after a few hours and a few discussions with the dr. and various nurses they decided that we will come back on monday to meet with the surgeon and then discuss admission. (yay!) Before they had decided to let us go, we had been sent to our hospital room on the floor to wait... I just left Teagan in the stroller and then held her. I didn't even want to touch that bed because I was determined to keep her out of there this weekend!

We went to the cardiac clinic for a chest x-ray, ekg, and vitals. Teagan is officially 12lbs 8oz and her sats were reading in the upper 70s! Then we headed over to the pass clinic to meet with anesthesia and wait some more. There's talk that we might not have to show up for admission until the day of surgery and if thats the case, they'll give Teag gas to put her to sleep before they poke her at all! (my first choice of course!) If they admit her monday, they will probably start an iv that night in the hospital room... :(

Our last stop of the day was up to the lab for bloodwork. This is the appointment that I most dread! I wasn't too anxious though because Teagan usually does really well with the heel poke thing. So we got called back, the guy did his thing and 4 vials later we were out of there without one cry!

We got back to the room to finally let Teagan nap and eat around 4 when my phone rang. The nurse said that Teag's potassium levels were extremely high on the lab results and we needed to come back and re-do the labs. She said that sometimes when they draw from the heel the potassium readings are off/high because the squeezing of the heel causes the platelets to break and release potassium giving a false high reading. So to avoid this they needed to draw from Teagans arm just like they do for adults... :( The nurse practitioner was nice enough to meet us downstairs and put some lidocaine gel on both of her arms to numb her up before hand since they don't do that in the lab. So we got the gel on her and waited around 15min. for it to work then went back for the draw. The lab tech banded her arm and tried twice to get it and couldn't... Teagan was really really upset so I told him that we wanted someone else and to stop. Trent and I went over to the Giraffe wing to get some sweeties for her and calm her down and then went back to the lab to try again. The new tech looked at her arm and tried to see a vein and couldn't find one, so he told us he'd have to go in through her hand (not numbed). He got it after a few minutes and our little trooper made it ok. She was really upset for awhile but managed to crack a smile as we made it back to our room. She got a badge for being so brave and its so fitting,"hero!"

Teagan is fed and asleep now and I'm waiting on a phone call from the nurse to see how the lab results came back. If they're still really high, then we'll probably be heading back over there but we're just hoping that it was the heel poke that threw off the results. If all is good then we get to spend the weekend here at the room with her relaxing and enjoying every moment. Tommorrow we have to start washing her with the Chlorohexidine wash once a day and putting antibiotic ointment in her nose 2x's per day (to kill any bacteria) until surgery day.

Thats all for now, I'll update more when the lab results are in. I'm amazed over and over again how well Teagan recovers from all the things she has to endure. Even after our crazy and hectic day, and after all the labs and poking- she's still smiling! God made her out of some pretty tough stuff, and she truly is my hero!

Here's Teagan with her lidocaine gel patches on her arms, and then after the final lab with her 'hero' badge.

Packin our bags!

2008-09-03T23:54:00.000-07:00

Sorry for the lack of posts this week, we've been busy! We're headed out tommorrow on our way to Seattle for Teagan's surgery. I've been trying to pack and get things ready for the trip and also just trying to enjoy the kids here at home.

Its so hard leaving tommorrow not knowing how long we'll be gone and apart from Gavin. So this week I've really been trying to spend even more time with him and enjoy the 'little things' he does. He is such a loving little guy and brings a smile to Trent and I both daily with the things he tells us. His newest thing he says is,"I love you higher than the moon!" (or a rocket ship, and sometimes a ladder) But tonight he said,"I love you as high as heaven!" I about cried! He likes to 'draw emails' in my favorite journals and 'throws' us kisses to "put in our pockets for later!" I'm going to miss him like crazy but he'll be in good hands while we're gone! He actually gets to spend time at Nana & Pacaws house and with 'Grandma from the airplane', so he's pretty excited!

I found out today that they have a room for us at the Ronald McDonald house and I'm so grateful! I didn't think we'd be able to stay there because there were 15 other families also on the wait list. Its so nice to have a room to 'set up camp' in the whole time we're gone- and its so close to the hospital!

Teagan has her pre-op appointments all day on friday, and we should know more about what the plan for the weekend is after that. I'm really hoping that I can talk them out of admitting her on friday and let us keep her nearby at the RMD house until monday. I'm not too excited about having her cooped up in the hospital all weekend if we don't need to be there! She is definitely showing more signs that she's ready for the surgery (not eating by bottle, pale, sweaty...) but she refuses to lay around and act sick! She likes to play in her bouncer, kick her legs like crazy, and lets you know when she's not getting enough attention! Anytime you look at her she grins ear to ear (especially for daddy!) and she's been laughing out loud too! I took a few pics monday before we put her ng back in and she loved having a tube free face for a while! I know that her fiesty little attitude will only serve to help her get through this hospital stay like a champ!

We'll be able to update more this weekend and then on surgery day! Thank you so much for all of your love and support! Thank you to Nana & Pacaw and to my Mom in advance for taking time off work and helping us so much! We couldn't do this without you guys!

We're in the books....

2008-08-28T14:36:00.000-07:00

So we finally have a date for Teagan's upcoming Glenn- although its NOT next week like we were hoping. By the time the scheduler got a hold of me, the OR for next week was already completely booked. Teagan will be having surgery on Tues. Sept. 9th but they want to admit her on friday the 5th.... 4 days before surgery! We're supposed to be there next friday at 9am and we'll have our pre-op appts. with the surgeon, anesthesia, the charge nurse, etc... then they'll admit her. I was hoping to be admitted the day before surgery but they want to monitor her sats and evaluate her feeding issues for a few days before the 'big day'.

I had everything lined up perfectly for a surgery date next week (care for Gav, Trents work schedule, housing for us, etc...) So now I'm in the process of re-working all of those things. I guess I should have assumed that it wouldn't go the way I wanted, right? But I know that there are babies that need surgery even sooner than Teagan and thats why the OR is so full, so we're praying for all of you out there!

Today is Trent's mom's birthday- Happy Birthday Nana! We can't thank you enough for all of your help these last few months! We love you!

Still waiting...

2008-08-27T21:47:00.000-07:00

So I finally got a hold of someone from the heart center yesterday after not hearing anything for 2 days. The lady I spoke with told me that the cardiac surgery scheduler was actually out of the office this week until THURSDAY! She said that no one had told them that we were expecting a call and that Teagan needed to be put on the schedule! She assured me that either her or the scheduler would call thursday morning and get us a date.... I guess there's only one person at Children's who schedules heart surgeries? Anyway, she was actually very nice and I talked her into peeking at the O.R. calendar to see if there's any way we'd be headed over next week or if we were talking like 2-3 weeks from now. She looked and said the 'rumor' is that there are openings on Tues. and Wed. of next week. I guess we'll find out tommorrow!

I keep reading this same sweet poem on alot of other blogs and wanted to post it here on ours, its so perfect!

"A Beautiful Day"

It's a beautiful day up in heaven. Jesus is gathering his baby angels to send to earth and be born. One of the sweetest angels says to Jesus, "I don't want to leave. I love it here and I will miss you." He reassures the scared little angel that everything will be fine and that this is just a visit.

The tiny angel is still not swayed on this idea so Jesus kneels down and says, "How about if you leave half of your heart here with me and take the other half with you. Will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies, "Of course you will. I have other angels there that will help, and will love you so much."

Then Jesus gives the tiny angel more details about His plan. He says, "When you are born, your mommy will be scared so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. When its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."