Trista Faith

Summer Fun!

2011-05-31T15:35:00.004-04:00

I know I am W*A*Y behind on posting and I will catch up....just not today! HA! I'm super swamped and I have lots of Trista news to share so I will be sure to post in a few days to keep everyone updated on how she's doing.

In the meantime, here is a cute picture of her taken last night while we were hanging out with our friends, Kevin, Jaime & the cutest little toddler boy - Sam of course!

She's such a hot mess - check her out!

Here she is helping Mommy in the kitchen a few weeks ago...

Can you even stand it??? :)

Team Trista - March for Babies 2011

2011-03-28T14:27:00.005-04:00

Hey, everyone! It's time to walk for babies again at the March of Dimes March for Babies event! Team Trista is super excited to be participating again this year! This event really means a lot to our family and gives us an opportunity to raise money for other babies that have been affected by disabilities/prematurity, etc.

Our walk this year will be held at Miami Meadows Park in Milford, Ohio on April 16th at 9am. If you would like to donate to TEAM TRISTA or would like to walk, please click here.

So far we have 40 registered walkers and have raised $635. We hope to reach our goal of $2500.

Team Trista 2010

Team Trista 2009

With your help, we can make a difference in the lives of babies all over the world!! :)

Look who's walking!!!

2011-03-01T20:10:00.002-05:00

The night of her party (the eve of her birthday), Trista decided it was time for her to start walking!!

It's a long video, but you can really see her in action. :)

Again, if you get the updates via email, you will need to click here to go to the blog in order to view the video.

Thanks for all your comments about Trista's party. It was such a fun day...nothing better than celebrating the life of our little miracle baby!!!

Guess who's 2??

2011-02-28T17:57:00.019-05:00

Yep - Sunday Miss Trista turned 2 years old! Can you even believe it! We had her big birthday party on Saturday. The theme this year was "Cute as a Button", so we had buttons EVERYWHERE!!! There are a ton of pictures to share, so I apologize in advance.

Trista had such a great time and did so well with all of the people around. I was nervous that she might get shy and timid...um...not the case at all!

Here is her food table. We had Chick-Fil-A nuggets, mini sandwiches and lots and lots of snacks. YUM!

The party cake and Trista's personal birthday cake!

Trista modeling her new hat from Grandpa & Vicki

Elly & Grandpa

Aunt Lexi and Trista

Trista was trying to feed Miss Andrea some cake!

Nikki, Chris & Trista with her bean bag that they gave her! Her favorite present by FAR!

Grammy & Grandpa Rod made Trista a beautiful baby cradle. Trista was in heaven rocking her babies!

Trista sitting on top of her present from Grandma Connie & Grandpa Shannon

Trista's boyfriend, Sam. The cutest little man in the world!

Destined to be together!!! :)

Trista & Grandma Connie

Can you tell she was excited??

The birthday girl!

Cute as a button!

Grandma Connie & Grandpa Shannon

Jaime :)

Nikki & Chris

Trista received the sweetest message from her cousin, Elly, on the morning of her party....

Please note: if you receive the updates via email, you will need to link to the blog to view the video. Click here to be redirected.

We also had a video montage of Trista's second year playing during the party....

Again, you will need to log-in to the blog to see the video. Click here to be redirected.

Make photo slide shows at www.OneTrueMedia.com

HAPPY 2nd BIRTHDAY, TRISTA FAITH!

Drum Roll, Please......

2011-02-09T22:34:00.004-05:00

Ok, in case you forgot -

Here is the BEFORE picture.........

...........and here is the AFTER!!!

Can you believe how different she looks? It is amazing! She is so happy too...her demeanor has completely changed. As you can see, she still has her stitches, but those should dissolve soon. Her bruising will decrease within the next week too.

I just LOVE being able to see those beautiful, blue eyes! :)

Post Surgery Update

2011-02-05T21:26:00.005-05:00

Sorry for the late update. It has been a grueling 2 days to say the least. Let's just say that this was WAY more than I thought it was going to be.

All of the pre-op went very smooth. Trista was really pretty calm and the nurses taking care of her were great. They did all the basic pre-op stuff...blood pressure, oxygen sats, weight, height, cardiology updates, etc. After about 2 hours, Trista was ready for her surgery.

We were able to walk her back to the Operating Room. Once there, we were able to meet the Cardiac Anesthesiologist, along with all the nurses that would be in the room with her. Then it was time to put her to sleep. They had me hold her on my lap while they placed a mask over her face. She fought..and fought...and fought. She is no wimp. Finally her arms went limp and I knew she was out. I struggled to stand up and put her on the bed. I found myself shaking. It was all too familiar. Scott and I gave her kisses and walked out of the OR. My heart sank...once again.

No matter what procedure your child is having done, it never seems to get any easier. Yes, I had faith that everything would be fine. Yes, this was way easier than open heart surgery. The fact of the matter was, though, it was all out of my hands...and I really struggled with that.

We sat in the same waiting room as we did last time. The procedure lasted a little over an hour and then they called our name. We met the doctor in a consultation room and he told us that everything went as planned. Her left eye was worse than her right and needed to be lifted more than he originally expected. He was very matter of fact - not telling us what to expect her to look like, just told us to come back and see him on Monday for a post-op appointment.

Whew! I was so relieved that everything went well. We had to wait about 40 more minutes in the waiting room until they called our name to go back to the recovery area to see her. As we walked back I honestly did not expect to see anything too graphic. No one prepared either of us for what we saw.

As we walked up to her room I could see that a nurse was rocking her. I couldn't see her face as it was buried in the nurses shoulder. I could see her arm all wrapped up with the IV, but that was all. I sat down next to the nurse and reached over to Trista's back to rub it. She immediately lifted her head and looked at me. I was devastated with what I saw and broke out into tears. Her eyes were full off "goop" and she was swollen beyond anything I could imagine. Her eyes were black and blue and the stitches seemed to be everywhere. It was so overwhelming.

After pulling myself together, the nurse handed her over to me. I just held her and cried. She looked so miserable and there was nothing I could do to help her. After rocking her for a few minutes, she started to come out of her anesthesia. She was not happy. Flailing her arms, pulling at her IV, trying to rub her eyes. The nurse saw how much she was struggling and gave her some medicine. She calmed down and I rocked her for about an hour before we packed up, completed all the discharge paperwork and headed home.

Once home, Trista perked up and wanted to crawl around and play. The swelling started to go down and she looked a lot better. Grandma Connie brought her a sweet teddy bear with a tutu and Maw-Maw brought her a little red doggy. She played most of the night and went to sleep around 8pm. Much to my surprise she slept all night (with the exeption of the 2 times I snuck up to her crib to put medicine on her eyes).

Today, she was really swollen and her left eye was more bruised. She was in good spirits, though. Playing and laughing. We have to put cream inside of her eye 7 times a day which is not an easy task as I'm sure you all can imagine. Keeping her hands off of her eyes is a major task also!

It's amazing how different she looks. We can finally see her beautiful blue eyes! I cannot wait until all of the swelling goes down and we can really see what she's going to look like. Her eyes are still trying to adjust to everything...you can see them rolling around a lot. She's gone 2 years not fully being able to see so this is quite a change for her! I am going to wait a few more days before I post some pictures. I'd like for some of the swelling to go down first.

Here is a good BEFORE picture that Scott took right before we took her to the OR. It will be interesting to see her AFTER picture :)

Our post-op appointment is on Monday at 1:30pm. Please pray for her continued healing. She is truly the strongest person I've ever known.

Thanks for your thoughts and prayers!

Surgery tomorrow!

2011-02-03T19:02:00.001-05:00

Yes, I think it's really going to happen this time! We kept Trista home from school this entire week just to be sure she stayed healthy....and I think we've succeeded!!!

Surgery is scheduled for 12:45 tomorrow. Please say a prayer!

I'll update later with how she's doing.

Thanks!

Cardiology Update

2011-01-20T10:21:00.004-05:00

Trista's appointment went really well yesterday. When we first got there they had to sedate her. They tried giving it to her orally, but she spit it all out. So, the next route was a shot. MAN - she was NOT a happy camper!!!

It took about 15-20 minutes before she was in sleepy land. Once she was asleep, they started the Echo. It lasted about an hour. After the Echo, she had an EKG. This test was very quick. Start to finish only lasted about 15 minutes total.

Next, we had to wake her up. She was so groggy and I could tell she didn't feel very good. She didn't want to eat or drink - poor thing was exhausted from everything.

After that, we headed over to the Cardiology clinic to talk to her Cardiologist. It's always nice when he walks in with a smile over his face. The relief that came over me was overwhelming. He said that all of her tests came out very good. She does has some leakage, but nothing too alarming as of now. He does not anticipate any surgeries in the near future. Her next procedure probably won't be until she's in her teenage years. YEAH!!!

It was also really surreal seeing him again and having all of these tests run. Whenever I'm on the cardiac floor it takes me back to those long days that we spent in the ICU praying for Trista to survive. The Cardiologist even said to us that he can't believe how well she is doing considering where she came from. He called her a true miracle.

Of course, we already knew that :) Thanks to everyone for all of the prayers.

Right now I'm going to hang out with my kiddos - we all have a snow day. Enjoy the rest of your day too! :)

Cardiology Appt. Tomorrow

2011-01-18T16:20:00.002-05:00

Well, I just heard from the eye surgeon and we are now on the schedule for February 4th. Now we just need to keep this little gal well!!!

On to other news - Trista has her BIG Cardiology appt tomorrow. She will have a sedated Echocardiogram and EKG. Following those tests, we will meet with her Cardiologist, Dr. Cnota, to see how her heart is doing. She hasn't seen Cardiology in a whole year, so lots could have changed since the last time we were there. This is a very big appointment and one that I am asking for you to pray about. Pray that they don't find any significant leaking in her valves. This is always a strong possibility with a TOF (Tetralogy of Fallot) repair.

I'll post the results tomorrow night. Say an extra prayer tonight and tomorrow for our little angel. :)

Surgery Postponed...

2011-01-08T17:38:00.003-05:00

Yesterday we went to Children's expecting to leave there with a baby whose eyes we could finally see. Instead, we came home exactly the way we left. Such a frustrating day! We got to the hospital, did all of the pre-op paperwork and check up. After waiting for a few hours (they were running behind almost 2 hours), the anesthesiologist came in to talk to us before the procedure. When he walked in the room I quickly knew he didn't feel comfortable with Trista's minor cold coupled with her heart defect. He was asking lots of questions about her cold symptoms, listened to her lungs multiple times and then said he needed to talk to the surgeon as he did not have a comfort level intubating Trista with a cold. Apparently, there is an increased risk of a child catching pneumonia if they have a cold when the breathing tube is used. They said that they would need to admit her into the ICU for observation for a few days post-surgery in order to be sure she didn't catch pneumonia. After talking to the surgeon, it was clear that they were not willing to take that risk. Pneumonia for Trista could be fatal.

Even though I was super frustrated (and yes - broke down into tears a few times at the hospital) I now understand that this was the best choice. Today Trista is much more congested and her cold seems to be getting worse. It took us over 3 months to get this surgery scheduled and there are not any more surgeries available anytime soon. It's getting very difficult for Trista to see - her eyelids are covering most of her pupil now.

My main question is - how will we ever have her perfectly healthy? It seems like there is always someone in our house with a runny nose or a cough! I try to keep her as confined as I possibly can, but there is only so much I can do. She attends school 3 days a week and is bound to catch something from all of the other 2 year olds. Ughhhh.....

We stopped at the surgeon's office on the way home from the hospital and made sure they knew that we are in desperate need of this surgery. The office manager said she would see if she could somehow squeeze us in within the next few months. If they can't, we will need to find a new surgeon.

Please pray that somehow we will be able to get her surgery done next month. To start over with a new surgeon would be like starting at the beginning again. Thanks, as always, for all your prayers. I will keep you all posted :)

Eye Surgery Tomorrow

2011-01-05T21:19:00.006-05:00

Well HELLO out there! Wow, it's been a while. I apologize for leaving everyone hanging. I took a much needed break from bloggerland while I spent some much needed time with my sweet children and husband over the holidays. I hope you all had a blessed Christmas and a Happy New Year!

I will post a December re-cap soon, but I wanted to quickly let everyone know what's up with Trista. She will be having her bilateral eyelid surgery tomorrow at 1pm at Children's. This will be a temporary fix for her eyes to help her be able to see better. Her more permanant surgery will be done when she's around 6-7 years old.

Please pray for her tomorrow. Considering what she's gone through in the past, this is not a big deal. However, anything for Trista is more risky. Her cardiologist will be onsite, so that helped me breathe a little easier! :)

I will update hopefully tomorrow to let everyone know how she's doing. Thanks for your prayers and support!

Oh My!!!

2010-11-19T08:28:00.002-05:00

I AM NOT PREGNANT!!!! :)

I have received TONS of emails & phone calls asking! I should have known not to put that we had exciting news...that's always the first thought that comes to people's minds. LOL

The exciting news has to do with Miss Trista. More to come on that later.

Just wanted to set the record straight!! :)

Have a great weekend!

October Re-Cap

2010-11-15T15:25:00.009-05:00

Wow - I have a LOT of catching up to do! It's been busy, busy around here with the kiddos.

Who doesn't love October? The smell of pumkin candles, the changing leaves, candy corn...need I say more?!!! It is officially my favorite month. So, here's a quick re-cap of it all.

Early October we headed to Destin, Florida for my Dad's wedding. Destin is paradise. I'm so in love with that place. We had LOTS of drama getting down there (including a broken down car), but once we were down there it was all worth it. We have TONS of pictures, but here are just a few. We stayed in the most gorgeous house on the beach and the wedding was beautiful!

As I said, the house was amazing. Here is a view from the beach...

And here is the front entrance....paradise!!!!

This was also Trista's 1st trip to the beach. She really liked it! Here are some pics of her taking her first dip in the ocean...

Halloween was so fun this year. The Friday before Halloween, Talan & Trista's school classes trick or treated around the "big school" to each of the classrooms. It took forever, but it was lots and lots of fun! Trista was a kitty cat and Talan was Optimus Prime...typical 4 year old boy costume!

It was fun getting to hang out with Trista's class. Have I mentioned that I LOVE her teachers?? They are seriously the best! Here is Trista with Ms. Megan...they were both cats!!

We always have a cul-de-sac party at our house on Halloween and the theme this year was a Mexican Fiesta. We had sombreros, mustaches, and lots of amazing mexican food. It was a lot of fun getting to hang out with all of our neighbors and friends. Yep...this is me and Scott. You know I look good ;)

Whew! That's all for now. Some exciting news to announce soon!!!! Stay tuned...

Baby Ewan Update

2010-10-04T15:13:00.003-04:00

Sweet Ewan passed away late last night. Safe in the arms of his mom and surrounded by his family. Words cannot even express how my heart is breaking for them. I have been there and felt the horrible pain that comes with watching your baby suffer. I cannot even imagine how it would feel, though, to have lost Trista after such a fight. All I want to do right now is pick her up and never let her go. It's days like this that I reflect on how incredible blessed we are that Trista recovered as well as she did after her surgery.

Please pray for their family. Here is the post copied from their website.

In loving memory
Ewan Eliezer Petermann
18 September 2010 - 3 October 2010

Half of my heart went to heaven last night.

We learned yesterday in the early afternoon that he had a bacterial infection (which proves fatal for so many of these special heart babies), and that several of his organs were failing. Though his oxygen saturation levels were in the upper 90s to 100, the oxygen wasn't perfusing through his body. The nurses said my normally active, awake, and squirmy boy hadn't opened his eyes all day.

And just the afternoon before, he had been looking intently into my eyes as I talked to and sang to him -- he moved his mouth as if to form words. I asked him if he had something to say. From the moment of his birth, he always had a deadlock with his eyes on James and I. When he looked at me, he'd really be looking at me. His gaze was so intent. There was recognition there, and I savored every moment.

We didn't get to see him open his eyes again.

In the presence of family and close friends, we gathered around his bed a little after 8 pm and prayed: thanking God for the gift of Ewan, thanking God for how even in just the span of his two weeks of life, his broken heart touched so many others. We thanked God for how He used Ewan to change lives, to encourage parents to hug their children a little tighter and a little longer. We sang hymns, and we played gentle lullabies.

The respiratory therapist came in an extubated him when we were ready. He was still connected to the ECMO machine so we could have our time to say goodbye. They brought in a couch for us to sit on in his room. We took turns holding him, kissing him, nibbling on his toes, stroking his hair, telling him how very much he was loved. He looked so very peaceful and was not in any kind of pain.

As Ewan Eliezer Petermann passed from this world to the next, he was surrounded by love and peace and so many people who loved him, who were there for his entrance. There was so much love, compassion, and dignity. One of the nurses who left us just before the shift change said that though she was not the least bit religious, she could feel angels in the room. I held him in my arms until the very moment the Everlasting Arms swept him up and took him home.

He came into this world in my arms, and that's how he left.

Even as I wept, I was filled up with peace. My sweet boy had fought so hard, but his body had failed him. He looked so peaceful and perfect. So many there that night -- nurses and doctors as well -- said it was hard to believe that a baby as perfect-looking as him could have something so very wrong with him.

I know. I know.

It was shortly before midnight that we called the nurse in to disconnect the ECMO. We knew we'd never really be ready for that moment. No one could have been. Every monitor was shut off, every machine shut down. You could see the change in his skin almost instantly. In just a few minutes, he was gone. The little heart finally stopped beating. Our sweet, sweet baby went to heaven.

If we had to say goodbye to him, I wouldn't have had it any other way.

* * * * *

Many have been struggling with the desire to say something that will help. Let me take that pressure away: there is nothing to be said that will take away or diminish our grief, even though we know that we do not grieve as those without hope. We understand that, and we certainly don't expect it. One of the hardest (but best) things to do is to sit in silence with someone who is grieving -- simply to sit and to be present without the need to offer words.

We thank you so much for how much and how well you have loved us, how you have loved Ewan, and how you will love us through this new season.

Pray for Baby Ewan!

2010-10-03T22:12:00.003-04:00

Please, Please, Please pray for this sweet baby boy, Ewan. He was born a few weeks ago with Tetralogy of Fallot (the same heart defect Trista has) and I have been in contact with his mom, Kirsten throughout this journey. Like us, they found out about Ewan's heart defect while she was pregnant. Ewan had his open heart surgery September 27th. Unfortunately, he is having many issues post surgery that are causing major concerns.

Here is a link to their website, Team Ewan. Please take a moment to read their story and pray for Baby Ewan and his family. They really need all of our prayers right now.

www.team-ewan.com

Talan's 1st Field Trip!

2010-09-21T22:02:00.006-04:00

So, Talan had his very first Field Trip today. Oh man, was he excited!!! Most of you know that he is a little cowboy at heart so he was right at home with the dirt & animals. I had to talk him out of wearing his cowboy boots and hat to school today...I thought it might be a little over the top for preschool - HA! :)

He was so excited that I was able to come with him. I was excited too! I was able to get off of work for the morning which I was so thankful for. I love my one-on-one time with my little man. Sometimes I think he feels like it's always about Trista, so its nice to remind him how special HE is.

Here he is on the school bus ready to go. I think he was just excited about riding the school bus as he was about the farm. Why is that anyway? Isn't it funny that they think its the greatest thing until they actually have to ride it every day to and from school?? Ok, I'm digressing...

The destination was Sunrock Farms in Northern Kentucky. It was a really cute place and it was nice to meet some of Talan's friends and their parents.

They pet a duck....

Saw chickens...

Planted some wheat seeds...

Milked a goat (you know you're laughing)...

Gathered some eggs...

and held some baby chicks!

Whew! They were definitely exhausted and ready for naps on the bus ride home! It was great day and one I'm so glad I was able to get to spend with Talan.

Here is a picture that Trista's teacher, Megan, sent me yesterday. Doesn't she look like she could just bust out with a little... "STOP..IN THE NAME OF LOVE"

Thought you might need a laugh! :)

Enjoy your week!

School Update!

2010-09-16T20:45:00.010-04:00

I'm so sorry it has taken me this long to post this update. I know many of you have been wondering how the kids are doing at their new school. One word comes to mind...AMAZING! I cannot even begin to tell you how happy we are with the decision to enroll them at St. Rita's.

The first week was a bit rough for Talan. It was definitely an adjustment to be somewhere all day long and take a nap at school. He's doing great now, though. He's signing up a storm! A few of the words he has learned are:

Thank you
Please
Bathroom
Good morning
Sleep
Cow
Horse
Boy
Girl
More
All done
Brother
Car
Play
Yellow
Color
Ball

Trista is amazing all of us at how well she's adjusting. In her classroom she has 2 hearing teachers (Connie & Andrea) and 1 deaf teacher (Megan). I cannot even begin to tell you how comfortable I am with Trista being taken care of by these three wonderful women. They even send me texts throughout the day to let me know how she's doing. Trista has already built strong relationships with them in her first few weeks of attending. So have I! :)

Trista absolutely loves her teacher, Megan. Megan was born deaf and actually graduated from St. Rita's. Megan started working in the LOFT program right after she graduated so she's been there for 4 years now. It is so awesome to have a role model like Megan for Trista to look up to and to learn from. Every time I walk in to pick Trista up, Megan is working with Trista on signing.

Trista has learned:

Mom
Dad
More
All done
Milk
Bath
Ball

I can already tell that Megan is going to be a big part of our lives! Look how happy Trista is with her!

Trista & Miss Megan

Megan teaching Trista the sign for "ball"

Trista & Miss Connie
Trista and Miss Andrea
Some of Trista's little friends

Trista kissing her baby doll

As you can probably see, Trista also got her orthotics since I posted last. Yes, they have flowers and butterflies on them...OF COURSE! :) She's been doing great with them. She is now keeping them on her feet the majority of the day. We haven't noticed a difference in the way she's walking yet, but I know we need to be patient and give it some time. Patience is not my best quality!

Me, my mom, my mother-in-law and my 2 sister in laws are all taking Sign Language classes. Last night was our second class and it has been so much fun! They offer the classes right there at the school and they even bring in some of the dorm students that are deaf to work with us. It has been a really neat experience.

That's all for tonight! I hope everyone is having a great week!! Hallelujah tomorrow is FRIDAY!

Going to School...

2010-08-29T21:26:00.002-04:00

Big news! We have decided to enroll Talan AND Trista in St. Rita's School for the Deaf. As most of you know, Trista has severe hearing loss. She is at a perfect age to start learning how to effectively communicate. I can tell she is getting frustrated and really wants to tell us what she's wanting/feeling, but she isn't able to communicate. St. Rita's is amazing. After touring the facility, it was clear that this was the place she needed to be.

Talan is not hearing impaired, but we feel it is important for him to learn how to communicate with his little sister. He will be in the Montessori Preschool program this year and then will transfer over to a "regular" school starting in Kindergarten. He started school last week (he's doing awesome) and Trista will be starting tomorrow. It is all so scary, but I know they will be in the best place possible.

Sorry it's such a short post, but I've got tons of emotions going on right now. Trista has never been taken care of by anyone except immediate family members. Her poor teacher...let's just say she already has a BIG file full of Trista's medical information. :)

Please pray that she does well tomorrow. I'll keep you updated!

When it rains...

2010-08-02T15:11:00.005-04:00

IT POURS!

I'm telling you - we must be standing under a big, dark cloud! At the end of the week before last, our entire air conditioner unit & furnace decided to break so we have been without air for a week and a half now. Of course, it had to break during the weekend full of humidity and blistering heat. Thankfully, this past weekend was much less humid and cooler. We had to purchase an entire new system which isn't cheap (I had NO idea these things cost so much!!).

Needless to say, we've had a lot of pool time these past few weeks just trying to stay cool!

Trista had an appointment last week with her Physical Therapist, Cathy. We've been noticing that Trista drags her feet when she pushes her baby stroller, so we had Cathy take a look. Right away, she noticed that Trista has what's called hypotonic pronation. This will need to be corrected ASAP while her bones are still soft and plyable. So, Trista is scheduled to be fitted with a special plastic brace/orthotic on both feet at the end of August. These will attempt to correct her pronation by locking the foot into a static alignment. We are hoping she won't need to have casts on her feet, but we will see what they say when they fit her. Here's a picture of what they look like. Apparently, they even have ones with butterflies on them. I think we might have to get those! :)

There is also more that we've been faced with lately that I don't want to get into. Don't be worried - everyone is fine. I am just asking for your prayers. I know I have some great prayer warriors out there to help! :)

Now on to a few pictures of Trista. Here are some from yesterday. My mom kept Trista while I hit the gym and texted these pics to me - THANKS, MOM!!

Also, I had to share this cute picture. I walked out into the living room the other day and there was Trista...brushing her baby dolls hair with a comb. PRICELESS!!!

I think she might give my hair stylist sister, Nikki, a run for her money! :)

July Re-Cap

2010-07-21T17:55:00.006-04:00

I hope everyone has had a great July. I know we sure have! It's been busy and full of chaos, but what's new, right?? :)

Here is a picture of Trista on the 4th. We had a small get together and, of course, crazy big and loud fireworks thanks to my pyrotechnic loving husband!

Trista is doing really good. She has a total of 5 teeth now and she's working on her 6th. Still all on the right side. Weird - for some reason her teeth aren't coming in on the left side.

She still isn't walking on her own yet, but she is crusing behind her baby stroller and loves walking around the table. BIG NEWS! She's started signing!!! She can sign "more" and "all done"! Those are the only 2 that she has shown us so far, but I can tell she's trying to work on more of them. I'm really hoping for the"ma-ma" sign soon!!

She has really started loving her brothers. Almost to the point of obsession with Talan. Talan & Alec do a lot of wrestling and Trista seems to think she's ready for that. She gets right in the middle of them and wants to be a part of the action. She might be little, but she sure is tough! The boys are starting to realize that already!!

She's almost 17 months and now up to 16.5 pounds. She's still on Alimentum which is a little tough just because it's so pricey. Most babies her age have been on regular milk for at least 3-4 months by now. She just loves her some Alimentum - I can already tell she's going to be a picky eater!! Speaking of eating, she is tolerating her baby food much better now. She loves bananas and strawberries and is starting to like sweet potatoes. Just yesterday she ate some pizza and really liked it too! Maybe she's getting over her "gag" reflex after all!

She's completely medicine free! No more reflux medicine twice a day. WOO-HOO! Can you tell I'm happy to say that?? Don't get me wrong, she still has reflux episodes, but they are getting MUCH better. :)

She had another Genetics appointment in July and, although she tested negative for Noonan Syndrome, the doctor still thinks there is a good possibility she has it. Apparently, only 60% of positive results actually show up positive. Weird, huh? He asked if we wanted to do another round of testing and we decided not to test anymore at this point. Maybe later. She just has way too much anxiety right now around doctors and hospitals. Another blood draw would send her over the edge. Since it is not going to change her course of treatment right now, we will wait until she's a little older for more testing. The poor little thing needs a break!

As you can probably tell in the pictures, her eyelids are becoming increasingly droopy. We have another appt. with the Opthamologist and Plastic Surgeon next month to determine when surgery will be needed.

She's still doing great with her hearing aids. She continues to be heavily involved in speech therapy, physical therapy and aural rehabilitation. She also sees her Audiologist every 2-3 weeks to have her hearing tested. She's still measuring moderate hearing loss in the right ear and moderately severe in her left ear. People always ask if she can hear "normal" with her hearing aids on. That answer is no. She will never be able to hear like we hear. They can only amplify sounds for her.

Me & the boys and Kevin, Jaime and Sam went to Monster Jam (aka Monster Trucks) a few weeks ago and had a BLAST! Talan loved every minute of it. Kevin & Jaime brought some flags for him to wave and he was very serious about waving those flags. It was so cute - we just kept watching him because he was so into it all. I love this age - I want him to stay 4 forever!!

My boys

Kevin & Sam

I mean, really? Could he get any stinkin' cuter???
The O'Leary Family

Scott & Alec

Me & Jaime

We also went to a pretty crazy concert last week, but that's a whole post in itself!!!

That's all for now. Enjoy the rest of your July! :)

Where do I even start???...

2010-06-24T16:18:00.012-04:00

Guess who's finally back to blogging....ME!! Geez - it's been a LONG time. As many of the rest of you, I blog to keep a record of our lives since I'm not the best at scrapbooking and MAN do I have a lot of stuff to catch up on. Bear with me.

June 4th we packed all the kids up and drove to Cooperstown, New York, for Alec's baseball tournament. It was about a 12 hour drive..with 3 kids...it was interesting to say the least. Lots of breaks to let the kids move around. When we arrived, it was not at all what we had expected. The lakehouse we stayed in with the rest of the families on the team was pretty gross (to say the least). But, we made the best of it. We didn't have much of a choice.

Now on to the weather. Perfect word for that = YUK! Rainy and cold the entire time we were there. I kept thinking...'did we really leave Cincinnati's warm weather for THIS'!!! It was pretty miserable, especially with a baby. We ended up spending tons of money at the gift shop buying blankets and hoodies to keep warm.

Alec's team played well. They had a few rough games and Alec was playing with a broken hand. Yes, I said BROKEN! The doctor gave him the ok to play since it had healed up for the most part. He pithced and played in the outfield. Cooperstown was quite an experience for these boys. Beautiful park! I have a bunch of pictures from the trip that I haven't downloaded yet. Stay tuned for those.

We didn't win the tournament, but the boys had an experience they will never forget and that makes it all worth while.

The day we returned from our trip to Cooperstown, we got a call from Scott's step-mom in California. Scott's dad, Steve, had a stroke the night before and was critically ill in the ICU. Scott flew out to see his dad for the last time. The type of stroke that Steve had was unique in that he could still hear what people were saying, but he was completely paralyzed. He couldn't even open his eyes. Scott sat at Steve's bedside until the moment he passed away on June 15th. After talking to Scott that afternoon, it was clear that he wanted the kids and I there with him. So, the next morning Talan, Trista and I hopped on a plane and flew to California to be with Scott and the rest of the family.

Scott's step-mom, Brenda, and Scott's brothers (Ryan and Jason) had never met Talan & Trista, so it was really nice getting to bring them with me. Talan fit right in - they live out in the country. They have pigs & chickens and Talan loved feeding them all.

Jason's wife, Casey, and I worked on the Memorial for Steve. We made a poster board full of pictures along with posters of Steve. We had the Memorial at a park in Shandon and it was beautiful. Scott rode Steve's Harley in and we parked it outside where everyone sat. It was a constant reminder of Steve. Instead of a normal funeral, we made it more like a celebration of Steve's life. That's how he would have wanted it to be. We had lots and lots of amazing food and there were a bunch of people that showed up to celebrate Steve's life. Here are a few pictures of the Memorial.

While we were there, we went to Scott's families ranch and watched a cow branding (can't say I've ever experienced anything like that before!!) and took a ride through the cattle farms. We had to buy Talan a cowboy hat, cowboy belt and a rope after this trip. He wants to be a cowboy when he grows up.

Talan even rode a harvester...

We also went to a couple beaches with Jason, Casey & their baby boy Brody. It was COLD!!!

It certainly was a hard trip, but I'm glad we made it. Keep Scott and his family in California in your prayers. I cannot even imagine how I would feel if I lost my dad.

I have lots more pictures, but I'm getting tired. I will try to post more in a couple days. Have a good weekend!

HAPPY 4th BIRTHDAY TALAN!

2010-05-19T18:09:00.003-04:00

I can't believe you are 4 years old today! Oh - how the time flies by! I found myself getting a little teary-eyed this morning when I woke up just thinking of how fast you are growing. You are my little man and no matter how big you get, you will always be! :)

Talan started his day off with his last day of preschool for the year. Tomorrow he graduates from the 3 year old program! He took in some treats to share with his classmates. Aren't these cute? Talan and I worked on them last night...

In case you can't read it, it says "Talan is o'fish'ally 4 years old today". We filled the little boxes with Swedish Fish which are Talan's favorite candy.

We also put together some teacher gifts. A little organizer personalized for his teacher's. I think they will enjoy them - plus, I loaded the inside with chocolate!! :)

After school, Scott and I took Talan to Chuck E Cheese and he had a blast! It was so nice to spend the entire day together with him. His big party is on Friday night, so that is really what he's really looking forward to! JUMP ZONE!

A quick thank you to Grandma Janet and Uncle Tim & Beth for the sweet cards and money you sent Talan. He loves getting mail - makes him feel all grown up!

Letter from a CHD Survivor

2010-05-19T17:40:00.003-04:00

I found this blog (http://www.perfectbrokenhearts.wordpress.com/) through another CHD mom and I was an emotional wreck reading it. I can't wait until Trista gets older and I can read it to her.

I look like any other girl. I like all the things the other kids like, Soccer, Basketball, tag, and video games. But I’m a little bit different than all of the kids. I’m the daughter of Nicole Wardell. I’m ten-year- old and I have Tetralogy of Fallot, a heart defect. It affects my life a whole lot. It isn’t horrible but it’s not too fun either. If I could write a letter to all the kids in the world with CHD and their families, this is what it would say.

Dear children with CHD,

I’m Abby and I have CHD just like you. I’m sorry to say having this heart defect is not easy. It will affect your life a lot. I know you must have more trials than most of your family. In this letter you will not only find advice on how to cope with it but you will also find how I feel about it.
Are you made fun of just because you’re short? Don’t worry I deal with it too. Even though the teasing can get tiring I’m 10 years old and I can still be carried by my parents. So If I can still be carried you can probably be carried for a long time too. It will be a thing that I miss when I finally get too big.

Do you run out of breath easily? I do. What I usually do is stop and take a rest. Your friends might think that’s weird but tell them why you need to stop and they will understand. You probably won’t like that but in the end you’ll be happy you didn’t faint on the playground.
Do you tend to stay sick longer than the other kids? You guessed it, I do too. Whatever you do, don’t worry. It’s normal because of your heart. It isn’t fun but you’ll just have to live with it.
Having this heart defect isn’t too fun, but it isn’t always bad. My life is a lot like my friends. I like to read books, play the piano and the guitar, listen to music, play video games, and lots of other things. I get good grades in school and like to shop for clothes.

Doctor’s and nurses can do a lot to help us overcome our heart problems. This summer I have an open heart surgery. I’m very scared. Even though I don’t want to have it, I have to. It will be yucky, no doubt about that but, my heart will be fixed and I won’t have to deal with lots of these problems anymore.

Those of you reading this have survived the disease or know someone with the disease. Others are not so lucky. It is very sad but too true that thousands of kids around the world lose their lives to CHD every day. So please give a helping hand to those in need. I hope you know you’re not the only one who deals with these trials. Let’s try to deal with it together.

Your Friend,
Abby

Down on the Farm

2010-05-17T14:22:00.007-04:00

Our family has TONS of stuff going on every year in April & May. My poor husband...here's a break-down:

April 28th - My birthday (yep - 30 this year...ouch)
May 4th - Our anniversary (8 years)
May 9th - Mother's Day
May 19th - Talan's birthday (4 this year)

So, this year he surprised me with a getaway (well, he told me about a week in advance since he knew I would need to coordinate my work schedule, the kids, etc.). We were headed to Hocking Hills near Athens, Ohio. Very peaceful, rustic, farm area. For those of you who know me well, you know this is right up my alley. I love the "simple" life! After talking it over, we decided it would be a perfect place to take Talan. He loves to ride his dirtbike and the farm house that we rented had hundreds of acres full of riding trails. How could we not take him? So, it went from a peaceful, romantic getaway to a vacation with our little man, but that was fine with us. We knew he would be in heaven!

About 2 hours before we were about to leave, Trista had a very serious reflux episode that lasted at least 10 straight minutes and she seemed to be aspirating (which means that the fluid was getting into her lungs) because she was unable to catch her breath. This happens about once a month and it is very scary. Needless to say, I was in no state of mind to leave her behind. So, we made the executive decision to take her along with us too. Our romantic 2 person getaway was now a full fledged family vacation. Pretty comical, but that's what being a parent is all about. Rolling with the punches! :)It was such a beautiful place. Here is a picture of the farm house. It had a beautiful pond in the back...it was so peaceful. Just like a little slice of heaven.

We went 4 wheeling, grilled out, swam and just enjoyed each other. It was wonderful and we were so happy that the kids were with us. I enjoyed EVERY moment of that weekend!

I have some exciting news....

TRISTA SAID "MA-MA"!!! It was such a special moment and one that I will never forget! It brought tears to my eyes, especially since I have been told (and came to terms with) the fact that she may never speak clearly. Man - is she proving them wrong or WHAT? That's my little miracle! Keep those prayers coming because they are certainly working!

More exciting news...

Talan will be turning 4 on Wednesday. I just cannot believe how time flies! It seems like he was just turning 1 yesterday and here he is riding dirt bikes. I love that little man more than he will ever know. All you mom's out there know exactly what I mean..there are no words to express the overwhelming love you have for your child and there is no better day to celebrate that than on their birthday!

HAPPY BIRTHDAY TALAN! WE LOVE YOU!

- Mom & Dad

Team Trista 2010 - PICTURE OVERLOAD!!!

2010-04-26T18:21:00.012-04:00

This past Saturday, Team Trista participated in the March for Babies walk for the 2nd year in a row. It was raining, but it was still awesome! We had hot pink t-shirts made (customink.com)...they are a great company by the way, and we really stood out!!

Grammy embellished Trista's shirt with bows and buttons - she looked so adorable. She is getting really attached to her little baby doll which is so cute and she was holding it the majority of the day today. Sweet :)

Here are some pictures from the walk...

There were 2 Bengals players that came to the walk and we had to get Trista's picture taken with them Now those are some big guys. They were like GIANTS!!!!

Here is baby Sam - he is a little over a month old now! Isn't he the cutest??

Where do you think she gets her curly, fuzzy blonde hair???

An extra special thank you to all who joined Team Trista and sponsored our walk. We ended up with close to 30 walkers and raised over $1,000 total!!!

Speaking of walking, Miss Trista has decided to start pushing her walking toy (baby stroller)!!!! She doesn't go far, but she is definitely trying to figure it out! I walked into the office for a few minutes and when I came back out into the living room this is what I saw...

Blog Break

2010-04-19T13:09:00.004-04:00

I know, I know, I'm sorry. I keep getting emails wondering if everything is ok. Yes - everything is great. I just took a little break. I really missed all my blog friends but I enjoyed taking some time away and it's amazing what you can get done when you stay off the computer! I was finally able to do some much needed organizing of the kids rooms. Trista's clothes...sigh...let's just say she loves clothes as much as her mommy! Not to mention all the shoes!! So, I went through everything that doesn't fit her anymore and packed it all up and down to the basement it went. She has definitely got some good use out of her clothes since she has been a size 3-6 months for quite some time now!!

I caught up on laundry and dishes and cleaning. I was even able to get my closet all cleaned out and ready for spring. Look at all the clothes I'm taking to Goodwill!

And I spent time with this little gal, my little boy, and a very handsome man that lives at my house (although he has been traveling a lot lately and hasn't been home much)! :-(

Amber, Lexi and I took Talan & Trista on the Easter Bunny Express Train Ride. While it was not at all what we expected it to be, we still had a good time. Here is their picture with the Easter Bunny himself! They both look like a deer in headlights!

Now on to some updates about Trista. She is now CRAWLING! Oh yes...all over the place! The other day I sat her in the living room and went to put some dishes away in the kitchen...about 2 minutes later I heard something behind me and there she was - just hanging out with mom in the kitchen!! She is on the move! She can also pull herself up to stand. It's wobbly, but she still manages to get herself up!

She has 4 teeth now (soon to be 5) and is just as spunky as can be! Another reason why I haven't blogged lately is because of Trista's schedule. It has been crazy to say the least. She has seen a developmental Pediatrician, Aural Rehabilitation Therapists, Speech Pathologists, and on and on. Not to mention her regular Pediatrician who likes to keep an eye on her regularly! We are busy gals to say the least!

She is still doing great with her hearing aids. We still go about every week to week and a half to have her hearing aids tested with her Audiologist. Her left ear still continues to move toward the severe category so they keep increasing the volume in that ear. All in all she's doing great. We're still working on sign language with her. She hasn't signed anything back, but I can tell she's started to understand some words.

I took her to an indoor play area (since she cannot stand being in the sun) and she went on the swing for the very first time. Sorry, it's blurry. I must have been moved when I snapped the picture and of course it's the only one I got of her on it! Figures.

She still weighs 15.5 pounds, but she is definitely getting taller. Still under the 5th percentile, but we'll take it. Next week she will be 14 months old!!! She babbles some sounds like "ma-ma", but mostly just likes to yell. She is enrolled in speech therapy through Children's so hopefully some words will come soon! Oh, and we've also just found out that she's a chronic teeth grinder! Apparently, it's very common in babies with hearing loss. Who knew? :)

Well, that's all for now. I will leave you with this sweet picture of Trista that I just received from Grammy. When I receive these text messages it makes my day!

Have a great week!

One Year Ago Today...

2010-03-11T16:16:00.003-05:00

....was the hardest day of our lives.

One year ago today, at only 4 pound and 12 days old, we handed our beautiful baby girl over to a team of surgeons to repair her broken heart. All I wanted to do was wrap my arms around her and protect her from the pain she would have to endure.

One year ago today, Trista became my hero.

God is so good!

Here is a copy of the CarePages posts from that day. The day that changed our lives forever.

Wednesday, March 11th
Posted Mar 11, 2009 12:23am
So, it's 12:22am and we're off to the hospital. Trista's sats dropped again overnight and they had to put her back on all the medication. Surgery is inevitable at this point.
I'll post more later today once I have more information.

Please Pray!
Posted Mar 11, 2009 2:26pm
Trista was just taken into surgery for a full heart repair. Please pray for her strength. The surgery should last about 5hours.
I will update more later today.

Post-Surgery Update
Posted Mar 11, 2009 7:48pm
Wow...what a day. Trista made it her through her complete repair surgery and she is doing well. The surgeons were very happy with how everything went. Now, we just need to pray that her body reacts well to the trauma and heals. The next few days are critical for her recovery.
We haven't been able to see her yet. Should be able to in about 30 minutes. We are so blessed that she has done so well throughout this - your prayers are working!

HAPPY NEW HEART BIRTHDAY, TRISTA!!

We're still here!

2010-03-09T18:32:00.003-05:00

Yes - we are still here! Many of you have emailed wondering where in the world I am. I'm so sorry I haven't posted in such a long time. I was so busy with Trista's birthday party and then someone in our family has been sick literally every week since then. I had Strep again the week following Trista's party and then this weekend had a horrible stomach bug. Yesterday, Talan and Trista started running VERY high temperatures and today it has moved on to me. UGH! I am so ready to feel healthy again! Talan & Trista are still sick too - hopefully we will all be on the mend tomorrow. We'll see...

I will do a whole post to re-cap Trista's big party, but I simply do not have the energy to do it tonight. I can feel the Tylenol wearing off and my fever coming back, so I'm going to hit the couch and rest a little while I can since Trista is napping.

A couple small updates in the meantime. We did get the results back from the Genetics Docs and it looks like Trista does not have Noonan Syndrome. So, the next step is to go back in 4 months for them to re-evaluate her and see if any of her symptoms have changed.

We also got the results of her CT scan that they did a couple weeks ago to determine whether or not her hearing loss was a result of a bone deformity in the inner ear. Those results came back as normal, meaning Trista does not have anything structurally wrong with her ear. That's good news to hear, but it also means that there is no surgical procedure that can help correct her hearing loss.

She also has a new tooth (so 3 total) and 2 more are trying to pop through! She is also starting to crawl...well..mostly scoot, but we'll take it! Hey - she's moving around! She's also up to 15.4 pounds! YEAH!!!

Gotta go. Here's a small glimpse of how much fun Trista had at her party. Such an angel!

Weight gain & other updates..

2010-02-18T16:13:00.003-05:00

Our little angel has finally gained some weight! Woo-hoo! She's up to 14.3 pounds! Here's a laugh for the day...I was looking through some of Talan's old Dr. visit paperwork and he was 17.8 pounds at 2 months and 28.6 pounds at 10 months! Umm...I don't think I even need to say anything about that! LOL :)

Yesterday we took Trista to the plastic surgeon at the Cincinnati Eye Institute to talk to him about Trista's eye lid lift. There is no question that she will need one, but he doesn't see an immediate need. Whew! He'd rather wait until she's around 2 years old. So, for now, that issue is on the back burner.

After the plastic surgeon visit, we headed over to Children's for Trista's audiology visit. Great news! Her pink hearing aids are in and they are SUPER CUTE on her!!! She's doing a little bit better at keeping them in her ears. She just really enjoys chewing on them right now. They also did some hearing testing in the booth and were able to get a more accurate reading in the left ear. They have changed that ear from moderate/severe, to severe. They increased the hearing aid volume in her left ear to help. The only problem is there is way more "feedback" coming out of that one now (which means high-pitched noises that "leak" out from time to time). Hopefully we will all get used to that, though.

Tomorrow is a rough day. Trista is having a sedated CT scan to see if they can determine the cause of her hearing loss. We have to be there at 8am and it should last a few hours. She does have to be put under general anesthesia, so there will be an IV involved which is never easy for her. She has such tiny veins and it always takes them so long to get it in the right spot. Hopefully tomorrow will be better. Please pray that she does well and it's not too painful for her.

We are also awaiting the results from genetics regarding the Noonan syndrome test. We should hear about that any day now.

On a brighter note - our days have been spent getting ready for Trista's big birthday celebration next Saturday! I have been making things like crazy...I am way overboard when it comes to first birthday's, but hey - after all Trista has been through, this is a TRUE CELEBRATION! What a year she has had! I want it to be super special for her in every way possible. Her Grammy bought her this tiara and gave it to her this morning. I'm going to let Talan decorate it for her birthday. Too cute! (sorry the picture is fuzzy - it was taken with a camera phone)

Now, if that doesn't make your heart smile then I don't know what will!!!!

Snow, Snow, Snow!

2010-02-09T18:27:00.006-05:00

Quick update...

We are pretty much snowed in around here. Since the roads were bad, I stayed home with Talan & Trista. It was so nice - we stayed cuddled up in our PJs all day long! Talan absolutely LOVES being outside in the snow. He will stay out there until his hands are so cold that he is in tears. While he was outside today, I had him grab some snow so that we could make some snow ice cream. Talan AND Trista both loved it! Trista couldn't get enough of it! She's trying to get some teeth on the top, so I'm sure it was feeling really good on her swollen gums.

I know she doesn't look like she's loving it - this was her look like "Mom...GIVE ME MORE ALREADY!! "

This is the face I love to see every day - nose all scrunched up and eyes squinted. Sometimes it's even accompanied with a snort. Nothing better than that. Well, other than when Talan tells me I'm beautiful. Usually it's when he's wanting me to get him something, but I still melt when he says it. I just can't imagine my life without my kids! They are everything to me!

Just a reminder that it is CHD Awareness week, so do what you can to help!

Our "Heart Hero"

2010-01-26T16:26:00.008-05:00

Trista was honored at a local elementary school today, Milford Christian Academy. What an amazing day for Trista! The students had a "jump rope" day for the American Heart Association and invited Trista to come and be the MCA "Heart Hero". We were completely overwhelmed with the unbelievable love that everyone showed us. Each class in the elementary had brought Trista a gift and there were many students who brought their own gift for Trista. There were handmade blankets with Trista's name on it, a diaper cake, a beautiful handmade hanger for all of Trista's bows complete with adorable bows already attached to it and on and on....!! Each student also wrote a letter/card to Trista and I was in tears reading through them this afternoon. All of the prayers that came from this school is awe-inspiring. My heart felt like it was going to explode for Trista as each student came to see her. Here are some pictures of Trista's big day!

They asked me to talk a little about Trista's history and her heart condition. Easy to do when you have the blessing that God has given you in your hands as you speak....definitely helps to ease the nerves. :) The video link is below.

http://www.youtube.com/watch?v=2icdjXqlOFo

THANK YOU MILFORD CHRISTIAN ACADEMY for a wonderful day!!! :)

Heart Hugs!

Genetic Testing & CHD Awareness Week!

2010-01-21T14:33:00.005-05:00

Yesterday I took Trista to the Genetic Doctors at Childrens. This referral was ordered by her Cardiologist to see if there is an overall umbrella diagnosis that can put all of the pieces of her medical issues together.

They asked LOTS of medical geneology questions about everyone in my family and Scott's family. Really nothing abnormal on either side. Then the doctor came in to observe Trista and WOW - she did not like him! She's starting to have a real fear of doctors and gets EXTREMELY upset when they come near her. She doesn't trust them at all...can't say I blame her, though, after all that she has been through.

After looking at Trista, he talked to me about the possibility of Trista having what's called "Noonan Syndrome". He ordered some bloodwork to send to a specialized lab in Boston to see if she does, indeed, have this syndrome. Apparently, many of her medical issues are common in this syndrome:

1. Heart Defect

2. Ptosis (aka droopy eyelids)

3. Chest abnormality

4. Poor weight gain and short stature

5. Bilateral hearing loss

Trista had enough of the common characteristics for the doctor to order the bloodwork. So, down to the lab we went and boy...IT WAS NOT A GOOD EXPERIENCE! Let's just say that Miss Trista throws up when she is upset and she was VERY upset! It was a very stinky ride home in the car to say the least! We should have the results back in about a month.

***********

On another note, February 7-14th is CHD Awareness Week! I stumbled across a family who has started an Etsy shop to sell CHD Awareness jewelry. Their daughter also has Tetralogy of Fallot and they are selling the jewelry to help spread CHD awareness. Check out their products here.

Here's some of their products:

Order yours today and help us spread Congenital Heart Defect Awareness!!!

Cardiology Appt. & Tutus

2010-01-12T18:13:00.004-05:00

Trista has a sedated echo tomorrow morning at 8am followed by an appointment with her cardiologist. Please pray that we get some good news!!

I will try to update tomorrow. Lots going on around here...starting to plan Trista's birthday party! Also, getting ready to host a baby shower for our good friends Kevin & Jaime this Saturday. I love parties!!! So does this little princess... :)

Trista's Aunt Lexi bought her this tutu - could you just eat her up or WHAT??

I was looking out the back door a couple days ago and this is what I saw....

Our new dog, Gracie, literally standing on top of the pool. That is how cold it is here in Cincinnati!!!!

GI Dr. Appt & SNOW DAY!!!

2010-01-07T20:09:00.007-05:00

Today began with a call from Trista's ENT doctor. They finally had the results of the genetic test regarding her hearing loss. The test results came back as non-genetic - meaning she has to go through more testing to figure out what exactly has caused this hearing loss. She is now scheduled for a CT scan on February 19th. She will need to be put under anesthesia for this since she is a heart baby. UGH!

After that, we headed out in the snow to Childrens for a follow-up GI appointment. Her appointment was at 12:30...we didn't get to see the doctor until 2:30!!! We were going nuts in the waiting room. Here are some pictures of Trista while we were waiting.

Once they called us back we had to undress Trista for them to weigh her and listen to her lungs/heart. As soon as we took her clothes off we noticed a strange rash all over her legs, feet, arms and hands. There was even some weird bumps on her face. Here are a few pictures...

So, we waited....

and waited.....

Thankfully it ended up not being anything serious. Apparently, it was some sort of viral infection (yes, another one) and will go away on its own. Makes sense, though, cause she's had a fever the past 2 days.

Her GI appointment went well. They focused on weight gain and her reflux. Her reflux seems to be improving so they adjusted her medication slightly to see if that changes anything. They also decided to switch her from her current formula (Alimentum) to something called Vital Jr. Apparently, it's a lot like PediaSure and is lactose-free and gluten-free. Just a step closer to regular milk. Since Trista has what is believed to be a protein allergy to cow's milk, this is a way for us to ease in to trying something a little less broken down. The only problem - it is over $100 per case! Even more expensive than Alimentum!!! I'm telling 'ya - insurance really should be covering this stuff! I'm even in the insurance industry and cannot understand their rationale for not covering something that is a necessity for a child's growth & development (don't even get me started on the hearing aids that aren't being covered - GRRRRR!). So, we will see if she likes the new Vital Jr. and, more importantly, if she reacts to it well.

We also had about 4 inches of snow today, so we took the kids outside for some fun in the snow! You know you're a redneck when...

...You fire up the dirtbikes and ride them in the snow! :)

Since it was Trista's first snowfall, I had to let her see it! Don't worry - she was only out long enough for me to snap a couple of pictures. She really liked it - she kept looking down at it like "what in the world is this stuff??"!

In other news, Trista has been doing awesome with her hearing aids. She has only taken them out a few times and is getting great at letting us put them back in. She LOVES playing "patty cake" and has even danced to some music. It is so neat seeing her enjoying all of the sounds.

That's all for now...stay warm!!!

She can hear!!!

2010-01-05T13:38:00.006-05:00

We went this morning to have Trista's hearing aids put in. She did great! We can already tell that she hears more - she's making lots of sounds and trying to adjust to new noises. She keeps yelling at herself and then smiling - it's pretty cute! She has really been great at keeping them on too. Her pink ones aren't in yet, so she has the silver ones (sigh). I can't wait until her pretty pink ones come in!

What I didn't know was how many supplies and instructions come with hearing aids! Man - it is unreal!

Her are some pictures of her after we got home from the Audiologist. You can tell she is happy!

I'm so excited for her - it's like a whole new world for her to experience!

10 months old!

2010-01-04T22:52:00.003-05:00

Trista - you are TEN months old!

What are you up to these days???

You weigh 13.5 pounds - still in the zero percentile
You wear a size 2 diaper
You are wearing 6-9 month clothes
You continue to grab EVERYTHING! Including Mommy's cell phone...

Tomorrow you will be getting your hearing aids!
You will still only eat baby food fruits - you like peaches, pears, bananas and applesauce.
You still gag when I try to feed you vegetables.
You are still napping 2x a day
You will sleep anywhere from 30 minutes to 2 hours
You sleep great at night. You usually fall asleep around 9pm and get up around 6-6:30am
You have 2 teeth now!
You aren't crawling, but you've finally got the hang of sitting up. Just today you even pulled yourself up (Grammy witnessed it)!
You don't sit up on your own, but if someone sets you in the right position you can stay sitting up for a good bit
You smile all the time and are starting to giggle more
You sing yourself to sleep at night and rub your eyes when you get tired
You've really started babbling Ma-Ma more
We are working on signing - I like to think you know what "Ma-Ma" is
You experienced your first Christmas and you loved it! You just sat on the floor and watched everyone open presents. You even ripped into a few of them yourself!
You love to be on the go, but you HATE riding in the car now
You are always so content and happy if we are out doing something
You also do so great out in restaurants!

I cannot believe I'm already starting to plan your 1st birthday! You have brought us all so much happiness in only 10 months - I can only imagine how happy you will continue to make all of us!

Happy New Year!

2009-12-31T16:59:00.003-05:00

2009 was a year of many ups and downs for our family. I am so blessed and so thankful for what God has done in our lives. The most important blessing I have is that God worked miracles on March 11, 2009 (Trista's Open Heart Surgery Day).

She has gone from this.....

...to this bundle of 13 pounds in 10 months!

Is God good or what? We believe in miracles around here!

Have a very safe & happy New Year!

Quick Update

2009-12-31T12:57:00.002-05:00

I wanted to send out a quick update to everyone about Trista. We did get her fitted for the hearing aids and she will need to have them in both ears. We were able to pick out pretty pastel pink ones for her...trying to make the best of it! I'm so excited for her - she should be able to hear soon...we are supposed to get them the first week in January. Woo-hoo! I cannot wait to see how she reacts! I'll make sure to post some pictures of her with them when they come in. Hopefully she will leave them in!

Along with all of her other in-home therapy appointments, Trista will now be visited by the hearing and deafness specialists from Cincinnati to help her (and all of us) learn signing and verbal cues. What amazing support we have. We are so blessed!

I also took Trista to the Opthamologist at Childrens so that they could check her vision. As most of you know, Trista has very droopy eyelids. Official term is "Ptosis" aka "Bedroom eyes" - HA! Great news (finally)...after dilating her eyes which was not an easy task, they were able to confirm that her vision is NOT impaired! Praises!!! They referred us on to a Pediatric Plastic Surgeon for an eyelid lift. Crazy what they can do these days! We should be receiving a call from them soon to set up the consult. I'm just so happy it's nothing more serious. We can handle some droopy eyelids!

Trista turned 10 months on the 27th, so I'm a bit behind on her 10 month update. I hope to do that later tonight.

HAPPY NEW YEAR!!

Trista's 1st Christmas!

2009-12-26T16:14:00.004-05:00

First of all..Merry Christmas to everyone! There has been so much going on lately that I have not been able to catch one extra minute to post to the blog. So, today I told myself I would get at least 1 post in!

Our Christmas was great. Well, other than the fact that Trista came down with yet another eye infection on Christmas Eve, Talan started complaining of a earache (confirmed ear infection at the Dr. today) and I ended up with Christmas strep throat! We have a TON of antibiotic at our house right now!

Trista also got her 2nd tooth on Christmas Day which is funny because Talan got his 1st tooth on Christmas Day 2 years ago. Here are some pics of our Christmas holiday.

Trista and her Great Grandma Janet (My Grandma)

Trista opening up a gift with Grandma Connie (my Mom) & Chase

Happy Trista on Christmas Eve!

Our Family on Christmas Eve

And...of course - we sprinkled reindeer food on the lawn Christmas Eve night!

That's all for now. I have lots more to update about Trista (hearing aids, opthamology appt), but laundry and dinner are calling!

Heart hugs to all!

Beautiful CHD Poem

2009-12-07T21:58:00.005-05:00

I found this poem on another CHD Mom's Blog. It touched me so much I had to pass it along.

A Mother's Perspective
(Stephanie Husted)

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked..."What's a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?
It’s Lasix,aspirin,Captopril…
It’s wondering…
Lord what’s your will?…

It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!

It’s the first time I held her…(I’d waited so long)
It’s knowing that I need to help her grow strong…
It’s making a hospital home for awhile…
It’s seeing my reward in every smile.

It’s checking her sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…

It’s asking do her nails look blue?
It’s cringing inside at what she’s been through.
It’s dozens of calls to her pediatrician…
(He knows me by name…I’m a mom on a mission)

It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.
It’s watching her sleeping…her breathing is steady…
It’s surgery day and I’ll never be ready.

It’s handing her over…( I’m still not prepared…)
It’s knowing that her heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that she’ll be okay.

It’s the wonderful friends with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…

It’s watching her chasing a small butterfly…
It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)

It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow

Never Ending...

2009-12-07T16:09:00.004-05:00

There is a lot to update, so bear with me.

Early last week I took Trista in for her 9 month check-up. There were some concerns. Trista had only gained 2 pounds since August. She's now up to 13.3 pounds which puts her in the zero percentile. This concerned the doctor so we are increasing her calories once again. Hopefully she will gain more weight with this. Her head measured great, so at least we know her brain is growing!!! We know she's smart! :)

Another concern was her eyes. The doctor commented on how "droopy" Trista's eyelids are and decided to refer her on to an Opthamologist at Children's. Apparently there is a surgical procedure that they can do to lift the eyelids. They just want to be sure that her vision isn't being impaired.

She also had a low-grade fever while we were there so the doctor asked me to monitor her throughout the night and in to the next morning. The last thing she needs right now is pneumonia, so they wanted us to watch her closely.

Her fever went down over the next day or two, but she started having cold symptoms. By Thursday night, the entire right side of her face was swollen and her eye was completely shut. Her eyes were pussing and looked HORRIBLE! After contacting her Pediatrician he directed us to head to the ER (since it was after hours). We were there for a LONG time. They did a chest x-ray to rule out pneumonia. Diagnosis was Bacterial Eye Infection. They sent us home with antibiotic eye ointment to apply 2x per day and told us to follow up with her Pediatrician on Friday.

So, off to the Pediatrician we went on Friday. Her doctor looked her over and decided to continue with the eye cream and see if she improves. The weekend was rough. She wasn't able to open her eyes the majority of the weekend and she was miserable. She wouldn't sleep through the night and was fussy - I would be too if I couldn't see!!!

I had to stay home from work today and take her back to the doctor for them to re-assess her. While she still has a runny nose, cough and her eyes aren't great, we are going to wait it out another day before we start her on oral antibiotic. They simply do not want to use antibiotics on her unless it is ABSOLUTELY necessary. They do not want her to become immune to it in the event she needs it for a more serious illness fown the road.

Oh and to add to it all - Scott just returned from the doctor and he has Strep Throat and Bronchitis. Fun times at our house right now. LOTS of Lysol!!!!

In other news, Trista has her FIRST TOOTH!! That's right - finally on December 1st it popped on through!! She loves moving her tongue over it to feel it...she's constantly trying to figure out what's going on in there!

That's it for now. There is more to tell, but I think I've typed enough. Have a great week! :)

9 Months Old!

2009-11-30T20:53:00.009-05:00

Trista - you are NINE months old!
What are you up to these days???
You weigh 13 lbs and 3 oz (0 percentile) - yes, zero on the percentile

Your length is 2 ft. 1 in (0 percentile) - yes, another zero on the percentile

You wear a size 2 diaper
You are wearing 6-9 month clothes

You grab EVERYTHING! As you can see in this picture! The sign isn't going to work anymore!

You just started eating more baby food - you like peaches, pears, bananas, sweet potatoes and applesauce. You gag when I try to feed you vegetables. Not a fan of corn, peas, carrots and any of the baby food "dinners"

Your appetite is getting better, but you're still not a big eater. You eat about 1.5 to 2 jars of baby food per day. The rest is still Alimentum.

You take at least two naps a day (most days). You will sleep anywhere from 30 minutes to 2 hours.
You sleep great at night. You usually fall asleep around 9pm and get up around 6-6:30am

Just this week one of your bottom teeth is started to show...any day now it will be popping through!

You aren't crawling, but you've finally got the hang of sitting up. You don't sit up on your own, but if someone sets you in the right position you can stay sitting up for a good bit

You smile all the time and are starting to giggle more

You sing yourself to sleep at night and rub your eyes when you get tired

You talk CONSTANTLY. Especially when we are in the car or in a store. You just talk and babble.

You love to be on the go. You are SO easy to take shopping or in the car. You are always so content and happy if we are out doing something. You also do so great out in restaurants!

You are still so tiny, but I can tell you're growing!!!

New Challenges

2009-11-21T21:04:00.003-05:00

On Friday, I took Trista in for her post-tube hearing test. The test was long...very long. Trista's Cardiologist would not allow the Audiologist to sedate her for the test (there are too many risks) so I had to get her to sleep while we were there so that they could test her while she was sleeping. The test was called an Auditory brainstem response (ABR) and Auditory stead-state response (ASSR). These tests measure brain waves following stimulation by sound. It was not painful in any way for Trista, so I was thankful for that.

As I stated above, the test was long. Start to finish about 1 hour and 45 minutes. The more they looked, the more nervous I became. I could read the looks on their faces...it didn't look good and I knew I was about to hear something I didn't want to hear.

After the test, the Audiologist asked me to step into the consultation room so that she could discuss the results with me. Again, this seemed all too familiar. The looks, the extra people coming in to see the results, the consultation room. I was overwhelmed with the flashback of when they first told us about Trista's heart. I couldn't hold back the tears. I knew that Trista would be hit with yet another impairment.

The Audiologist started off by telling me that Trista definitely has significant hearing loss. The tubes were not able to help correct the problem. The hearing loss is in both ears - the left being worse than the right. She can hear some, but she is only able to hear conversational speech at a distance of 3-4 feet at best. She will need to be fitted with hearing aids ASAP in order to help her not fall way behind in her speech and development. She did prep me for some imperfect speech production down the road for Trista and the need for ongoing speech therapy. She gave me lots of books on hearing loss in children and support groups to turn to. We are scheduled on December 10th to talk to the Otolaryngologist (also known as an ENT doc) to discuss everything with him in more detail.

Although the news was not at all easy to hear, we still feel so blessed. Blessed to have Trista and hold her. Blessed to see her every morning and melt when we see her smile. This is just going to become another part of our lives. A life we wouldn't change for anything!

October Re-Cap

2009-11-17T20:56:00.008-05:00

Man, I am WAY behind on blogging! Here is a re-cap of the October events.

We took Talan & Trista to the pumpkin farm and the apple farm. It was really muddy that day so we didn't stay very long. Long enough to get some good pictures! :)

Now on to Halloween. Trista was a teddy bear (the littlest, cutest teddy bear EVER)! Talan was a cowboy riding a horse...perfect fit for him! We only took Trista to a couple of houses because it was so cold outside. Talan lasted the whole time and had a blast. I had to hide the candy from him because he seemed to think he could eat it ALL Halloween night! Who invented the ginormous pixie sticks anyway???

Another fun part of October was going to Alec's football games! His school (Guardian Angels) made it all the way to the Championship game. They ended up not winning that game, but they did an awesome job. We are all so proud of Alec - he really is an amazing athlete!
That's a quick wrap up of October. I'll leave you with a sweet picture of Daddy with "Big T" and "Lil' T" that I snapped tonight. I'm the luckiest girl in the world! :)

8 months old!

2009-10-27T21:36:00.008-04:00

TRISTA - YOU'RE 8 MONTHS OLD TODAY!!

WHAT ARE YOU UP TO THESE DAYS?

You wear 3-6 month clothes and still in size 2 diapers

You have started taking naps during the day about every 3 hours

You are doing better with eating baby food, but only the fruits. You cannot stand any of the veggies or dinners...you actually gag!

Your teeth still haven't come through yet, but you still chew on everything you get your hands on

You can sit up now (with some help nearby)

Your brother, Talan, calls you "Tristie"

Daddy still calls you "Baby Girl"

You talk all the time - I figure you will be that kid who gets sent home with notes for "excessive talking"

I think you spend 75% of the day smiling. You have the cutest personality. I literally can't get enough of you - I will never kiss you or hug you enough

Your hair has really started to come in this month and it's a honey colored blonde! You also have baby blue eyes.

Just this month you have started scrunching up your nose and snorting..it is sooo cute

You go to bed every night between 9 and 9:30. About 30 minutes before bed time you are super cranky and restless.

You love to lay flat on your back and have someone change your clothes or your diaper...I think you just like having someone's full attention all the time!

The first year of your life is just flying by! I can't believe you are only 4 months from being one year old!!! We love you SO much!!!!

Let's go fly a kite!

2009-10-22T21:56:00.006-04:00

The weather here has been amazing the past couple of days, so we decided to take Talan & Trista to the park for a fall picnic. We picked up some subs on the way and ate on a blanket with the kids...ahh...so peaceful.

Scott and Talan started flying a kite and Trista and I sat and watched (and took pictures of course)! Trista HATES the sunlight so I had to get creative and shade her with blankets and anything else I could use to make a tent. I just love this picture of Talan looking up at the kite. He looks so small and the leaves are absolutely gorgeous!

To sum it all up - it's been a great week. Lots of family time and beautiful weather!

On another note, I snapped a picture of Miss Trista holding her own bottle!! Can you even believe it? She still likes to act like she doesn't know how so that we will hold it for her. I cannot believe she will be 8 months old next week. Where does the time go?

Let's get physical

2009-10-16T22:32:00.004-04:00

Just a quick update tonight. Trista's Physical Therapists came over today to work with Trista. She did great! She's moving around much like a 6 month old (just a couple months behind), but they are VERY pleased with the progress she's making.

She can roll over from back to belly and also from belly to back. They are working on getting her sit up. She can do it if she's leaning on something, but she's as wobbly as can be when you let go of her.

Here she is with Amanda, one of the PTs. They just love her and can't get enough of her - the feeling is mutual...Trista LOVES when they come and play with her!

Have a great weekend!

Gastric Emptying Results

2009-10-15T22:23:00.002-04:00

We received the test results back yesterday. Nothing we didn't already know. Trista's reflux has now moved to the "severe" category (it was in "moderate"). Her gastric emptying was slow, but nothing too alarming. Plan of action = nothing different. Yes, I'll repeat it - nothing different. Same dosage of medication and wait. Wait until she turns 1 and see if it subsides. If not, then we will most likely need surgical intervention. Please pray for her reflux to calm down...she is really struggling on a daily basis with it and there really isn't any more doctors can do at this point. Just a waiting game.

Her physical therapists are scheduled to come to see her tomorrow, so I hope to get a few snapshots of her "in action" - HA! Hopefully I'll be able to post them tomorrow night.

On another note, I have once again updated the blog design. If you are receiving this update via email, make sure you stop and check it out. :)

Hugs!

LOTS going on...

2009-10-12T12:55:00.007-04:00

Sorry I haven't posted in a while. We have been SUPER busy. I'm going to try and wrap up the last week and weekend, so bear with me! :)

As many of you know, Trista's reflux seems to be getting worse. In order to figure out what is going on, her GI doc had to order another test. Last Friday, Trista had to go back to Children's for a Gastric Emptying Scan. This was NOT fun at all! She had to drink some radioactive mixture and then lay flat on the machine for an hour straight (not even sedated) while they took images of the liquid empyting and measured the rate and which it emptied. Needless to say, this was a VERY long hour for Trista (and mommy too)! She was strapped down and wasn't able to move. I was able to get my hand in there to hold hers and give her a few toys to play with. So, normally the stomach empties 50% or more at the end of the hour. Trista's had not even emptied 30% - UGH! We needed to kill some time (an hour to be exact) and get re-scanned. So down to the cafeteria I went with a very unhappy, hungry baby. Here she is eating her hospital bracelet! We should get the test results back early this week, so we'll see what needs to happen next. Never a dull moment with this little gal!

This past Saturday me, Talan, Trista, my mom and her friend, Sue, participated in a walk for Cincinnati Children's Hospital. They had tons of stuff to do and Talan got his face painted like a lion! We had such a good time and even saw a few fellow heart friends. All of the proceeds that we raised went to the heart camp that Chidren's sponsors every year for children with CHDs and their families. It was chilly, though, only in the 40s so we had to bundle Trista up tight to keep her warm.

On Sunday, Trista went to her first birthday party for her second cousin, Maddie. She was turning 2 and she had a Little Mermaid party. Oh man - made me start thinking already of Trista's 1st birthday....can't wait!!!!

We all had SO much fun! Here are a few pictures...I only had my cell phone camera, so the pictures are a little fuzzy.

Here is Trista getting ready to go!

That is a quick wrap up of what's been going on with us. I hope everyone is enjoying this beautiful Fall weather! I'm going to leave you with our Fall mailing of the kids this year. Have a great week!

7 months old!

2009-09-27T20:33:00.009-04:00

TRISTA - YOU'RE 7 MONTHS OLD TODAY!!!

What are you up to this month??

You weigh close to 12 pounds
You are finally in a size 2 diaper
You still wear 3-6 month clothes
You sleep all the way through the night (usually 9pm until 6:30am)
You are getting louder and louder when you "talk"
You've started to become uneasy around strangers and have started reaching for Mommy & Daddy
You are getting better at sitting in your Bumbo seat
Just this past week you've started rolling over
You are scared of one of your baby dolls and yell at her when we put her close to you
You've mastered the baby food "fruits"...now we're moving on to veggies
You would rather be held all day and all night, but we're working on making you have some quiet time playing by yourself
You are still SOOOO close to laughing and make little squeals
You've made a big step this past month and have moved upstairs to your own room to sleep
You are taking naps now every 3 hours and sleep about 45 mins at a time (in your room!!)
Still no teeth yet, but they're coming soon and you chew on EVERYTHING!
You are still working on sitting up on your own - not there yet, but getting stronger
You still love to kick your legs to show us you're excited

Just when I think I can't possibly love you anymore - I wake up the next morning and I do!!

You're growing...slowly, but surely! :)

Fall Pictures

2009-09-20T20:51:00.003-04:00

I had some Fall pictures taken of Talan & Trista - it was also Trista's 6 month pictures. They had to squeeze us in, so we weren't able to take Alec with us which was a bummer, but we are planning on getting more done for Christmas so we will have a family picture with all of us in it! :)

Here are some of the really cute ones. I know I am biased, but....they are so stinkin' cute!

LOTS of firsts!

2009-09-08T19:56:00.009-04:00

So, what's been going on with this little gal??

Here's a hint...

"First" #1: TRISTA SLEPT IN HER CRIB LAST NIGHT FOR THE 1st TIME! YAY!

"First" #2: FIRST RIDE ON THE TRACTOR WITH DADDY!

"First" #3: FIRST TIME WEARING SUNGLASSES!

"First" #4: FIRST TIME HOLDING A BABY DOLL!

"First" #5: FIRST TIME EATING BABY FOOD FRUITS!

We aren't there yet, but we're getting close to "First" #6...

What is this...

THIS...

Oh man - she is SO close and SO mad about it! Constantly chewing on her little hands and putting everything in her mouth. Hopefully she'll get some relief soon!

Look how big I am everyone! SOOOO BIG!

Have a wonderful week! Hugs to all!

New CHD Awareness Montage!

2009-09-05T20:21:00.006-04:00

Lauren, a fellow blogger and CHD survivor herself, has created another CHD awareness Montage. I have posted it on the blog and have also included it below. Trista is in the Montage along with other precious CHD children and angels.

Please take a look and help us in continuing to spread CHD awareness to all!

http://www.onetruemedia.com/shared?p=919536ae53bca5144f3877&skin_id=601&utm_source=otm&utm_medium=text_url

Tubes are In!

2009-09-01T21:16:00.004-04:00

Yesterday morning we took Trista in to have her ear tubes put in. It literally took them 10 minutes tops for the procedure...such a piece of cake compared to what we've been through previously with her! The hardest part was not being able to feed her. Her surgery was at 7:49am and we had to be there at 6:15am. So, when we got her up to leave around 5:30 she was ready to eat and NOT happy that we weren't feeding her!

Here are some pictures of her in the little hospital gown getting ready for the procedure. It was the smallest gown they had and still way too big.

The procedure went great...no problems at all. She came home and rested pretty much the remainder of the day. We can really tell a difference in her already. It is very clear that she can now hear much better and is starting to make more noises. All very good news! Here she is after we got her back home. She was SO happy to have her Alimentum again!

Quick doctor update...she now weighs 11 pounds 3 oz. (still under the 5th percentile) and she is 1ft 10.5 inches (under the 5th percentile). Her doctor recommended enrolling her in an Early Intervention Program where Occupational & Physical Therapists will come to our house on a weekly basis to work on her development skills. She is smiling, coo-ing and reaching for toys which is good. We just need to get her strength up...most babies at this age are starting to sit up on their own and Miss Trista is nowhere close to that yet! She'll get there...just needs a little help :)

6 Months Old!

2009-08-27T16:25:00.007-04:00

TRISTA - YOU'RE 6 MONTHS OLD TODAY!!!

What are you up to these days??

You weigh around 11.5 pounds

Still in a size 1-2 diaper...the 2's are still a little too big

You wear 3-6 month clothes

You sleep all the way through the night

You LOVE to snuggle in bed with Daddy while Mommy gets ready for work

You are such a smiley face and you smile at everyone you see

You have started sitting in your "Bumbo" seat and you like it for a few minutes...then you're over it!

You sill like to make noises and they are really starting to sound like "ma-ma"

You just had your first "road trip" and spent the night in a hotel for the first time

You are still trying out the baby food - only rice cereal, bananas & applesauce so far

You love to play with mommy's necklaces when I get home from work and scoop you up

You still haven't laughed yet, but I have a feeling it's coming soon

You still sleep in your bassinett in Mommy & Daddy's room

Your favorite toy is a little penguin - you love to chew on it

Still no teeth yet, but they're coming soon

You are still working on sitting up on your own - not there yet

You're not a napper at all! You take 20 minute "cat-naps" a couple times a day and you wear your Grammy out!

You've really started kicking a lot - showing us you're excited

I cannot believe you are already a half a year old! I can't wait to see the little girl you will be. I know that you will bring me joy every single day of my life. Your Daddy and I love you SO very much, Baby Girl!

Look how much you've grown!

Play Date!

2009-08-21T07:50:00.003-04:00

A couple weeks ago, I took Talan & Trista over to my cousin and his lovely wife's house for a play date with their beautiful little girls, Annabelle and Maddie. Oh man - did they have fun!

Maddie and Talan are pretty close in age - Talan is 3 and Maddie will soon be 2. They drove little buggies and bikes all around the kitchen while Stacy and I held the little ones. We had such a wonderful time! Annabelle and Trista are close in age also. Annabelle is one month older than Trista, so I'm excited they will be able to grow up together!

Stacy and I had a wonderful time just chatting and talking about the kids. Their house was absolutely beautiful and we had a nice lunch and even some homemade chocolate chip cookies...YUM!

Here are some pictures of Talan & Maddie. We could only get a couple 'cause they were on the move constantly!

Here are Trista & Annabelle...I can already tell they are going to get in trouble together when they're older! They are way too cute!

Columbus Crew "Heart" Game & Pool Time!

2009-08-16T22:11:00.008-04:00

On Saturday, our family packed up and headed to Columbus (about 1.5 hours away) for the 2nd annual Columbus Crew "Heart"Game. For those of you who aren't aware of who the "Columbus Crew" are - they are a MLS soccer team. At this game, a portion of every ticket purchased went to the Children's Heart Foundation. What a wonderful cause and one that is near and dear to our hearts!

They allowed heart kids and siblings to be "ball kids", so Alec was able to participate in that and got up close and personal with the players. He did a great job!

Alec being a "Ball Kid"

Trista, Aunt Amber, Eric & Aunt Lexi

Talan, Me & My Dad

Our family (minus our ball boy, Alec)

Talan in his "Crew" gear

Trista talking to her Daddy in the car

We had such a wonderful time hanging out and watching the game with family and meeting other parents with kids that had similar heart conditions and defects. We even sat right behind a couple who's son also has Tetralogy of Fallot (which is the heart defect Trista has). His name was Evan - he is 13 years old and doing great. In fact, you would never know that he had TOF. He was such a sweetheart and held Trista so that we could take a photo of the 2 TOF kids. It was such an encouragement to see Evan and hear his story. He will most likely have his second surgery within the next couple of years, so please add Evan and his family to your prayer lists!

Once we got home, we were all in desperate need of some POOL TIME and it was Trista's very first pool experience. So, I have this really cute bikini for her but she's still way too small to fit into it, so we had to dress her in a onesie for the time being...at least until she grows a little bit! She did great in the pool - she was really calm and loved kicking her legs under water! Hard to believe that next year she will be running around this pool! :)

I also have some pictures that I need to download this week of a play date that Talan & Trista had with their second cousins, Maddie and Annabelle. More to come on that later this week (when I have some time to breathe)!!! Until then, have a great week!

Teething Time and VIDEO!

2009-08-11T21:34:00.012-04:00

Here is a quick update on Trista. She is in the process of cutting some teeth, so...let's just say...she's a little on the CRANKY side! She wants to put EVERYTHING in her mouth and she doesn't really like the standard teething rings and toys. So, I've invested in a super cool "gummie doll" that she can chew on and I think she will absolutely love it! I'm having her initials put on it too! Here's a picture of one. You can go here to check them out! What a neat idea!

She has really started to show some personality lately...just "talking" up a storm. Here is a video we took of her tonight right after dinner. She likes to play the yelling game and man, she can get loud!!!

Here is a cute pic that we took of her tonight too...

Yes, she is standing on her high chair!

So, we tried out the exersaucer this past weekend. Ok - it's a bit of a stretch, but she looks so stinkin' cute with her little chicken legs hanging out of the bottom! She likes it for a few minutes and then she's done! She'd rather be held...of course!

We also went to a friend's farm this past weekend and had a blast. Talan was amazed at their horses and goats. He's such a little country boy with his workboots on - just like DAD!

That's all for now. Enjoy the rest of the week!

Fun Summer Days!

2009-08-03T22:12:00.008-04:00

We have been busy doing lots of fun summer things the past week. First, Scott took Talan to the fair for the first time and OH MAN did he love it! Here is a picture of them before they headed out to see the truck and tractor pulls. I love how he wanted to dress just like his Daddy...work boots and baseball cap - such a little man!

A couple nights later, we took both Talan & Trista to the fair and she was able to experience the loud noises of the trucks. We put some ear plugs in her little ears and she did great! Don't worry - they didn't go all the way in and they were only in her ears for a few minutes. Long enough to get a picture! :)

Talan LOVES him some tractors!

On Saturday night, we took Talan to his very first Reds game. He was so cute - he didn't watch one minute of the game and was more interested in the hot dogs and ice cream, but we had so much fun taking him!

Tonight we had a surprise visit from my sister, Nikki, her boyfriend, Chris, and my niece Elly. We had so much fun visiting with all of them and Trista talked to Nikki like crazy!

We finally have Trista's ear tubes scheduled for August 31st. We have to wait so long because any procedure Trista has will need to be at the main Children's campus downtown due to her heart condition. Even though we have to wait, we understand. We, of course, would want her to be with her cardiologist in the event something would happen.

That's what we've been up to! I hope everyone is enjoying their families too and savoring the summertime! :)

Happy 5 month birthday, Trista!!!

2009-07-27T19:24:00.012-04:00

TRISTA - YOU'RE 5 MONTHS OLD!

What are you up to these days?

You weigh around 10 lbs 8 oz (4%) give or take (you will be weighed on Wed)
You are 2 feet long (6%)

You wear a size 1/2 diaper
You are still in 3 month clothes

Your eyes are a beautiful blue like your Grandpa's

Your hair is still RED!

You have just started sleeping through the night which makes Mommy VERY happy!
You LOVE when I sing to you

You smile when we smile back at you and Daddy finally got a picture of it!

You had your first bite of applesauce yesterday and you seemed to like it!
You arch your back like crazy - even when you're in the swing

You are starting to say "Momma". Even though I know it's just baby talk, I still like to think you're saying my name!

You still grunt non-stop to the point that people stare at us wondering if you are ok!

You still sleep next to Mom and Dad in the bassinet. Pretty soon you'll try out your big girl bed!

You still only eat about 2-3 ounces per feeding

You try to eat Mommy's face when I lean in to give you a kiss

You still have to be "propped up" at all times to avoid the reflux but you seem to be getting a little better

You've started noticing my hair and are grabbing it - OUCH!

You are a total momma's girl...and maybe a little spoiled, but I wouldn't have it any other way!

Look at you growing!!!

Zoo Trip and Good News!

2009-07-21T19:42:00.005-04:00

We took a trip to the zoo this weekend with Talan & Trista and had a BLAST! Talan was amazed at the elephants...we had to pry him away! It was such a beautiful day to go - 74 degrees and sunny. Ahhh! Nice break from the heat!

On Sunday, our good friends Kevin and Jaime stopped by. Since we were all outside I snapped a couple pictures of them with Talan & Trista. They are like their aunt & uncle - they love Kevin & Jaime! Right after I took this picture Kevin told us that Jaime was PREGNANT! YAY! We are so excited for them! They will be wonderful parents!

Scott had his gallbladder taken out yesterday, so he's not feeling very good today. :( Pray for his speedy recovery.

Better run - Trista is calling my name... :)

New Pics!

2009-07-15T17:50:00.008-04:00

Well, I've finally had some time to upload some new pictures of the kids. Here are Talan & Trista snuggling this morning in our bed. I had to snap a couple shots - they were too sweet!

Look at her holding her head up...FINALLY! :)

Here is the way Trista lays when she's on the floor - completely hyper-extended. This is because of her reflux...she thinks it feels better when her head is back...weird I know! Poor thing!
Nothing really new since the last post. We're just enjoying the summer and time together. Trista is doing really well (other than the reflux issues). Developmentally, she is reaching for rattles and puts everything near her sight into her mouth! No giggles from her yet, but I can tell it's coming soon. Ahh - can't wait for that sound! :)
Here is a family picture with all of us. We're all actually smiling...it's a miracle. Well, maybe not Trista, but she'll get it sooner or later. She'll have to with the amount of pictures I take of her!

That's all for now! Have a wonderful rest of your week!

EKG Results and GI Update

2009-07-10T15:11:00.001-04:00

Sorry I haven't posted in a few days. It is non-stop around here! So, Trista had an EKG on Wednesday along with a visit to her cardiologist. Great news! Her heart looks great - they are simply amazed at how well it's doing. Her saturation levels are at 100% which is incredible for a baby with TOF. They were really excited with what they saw with this EKG. We had some more good news after the cardiology appt. We headed down to ENT for them to re-check her ears. The doctor had noticed that the infection was decreasing! Not completely, but at least something is finally working for her! We will be scheduling her tubes at her next appointment.

Here is Trista getting her EKG. She's looking at the doctor like "been there, done this MANY times"! :)

She tipped the scales at over 10 pounds this week. Woo-Hoo!!!

We were also able to meet with GI yesterday for their interpretation of the pH probe results. While the results were not good, they would still like to wait it out to see if she possibly outgrows this sever reflux issue. They gave us the option to put her on Reglan, but from what I've heard, I was not comfortable putting her on that due to the possible neurological side effects. That's the LAST thing she needs right now! They also told us we could go ahead and switch her formula back to something more basic. So, that we did. Tried her on some Similac last night and that was NOT a good idea. She vomited and vomited until nothing else was left. Looks like we're going to be on the Alimentum for a while!

So, all in all it has been a week of good news! She is such a strong little girl - she continues to amaze us!

Trista's daddy's birthday is today, so HAPPY BIRTHDAY, DADDY! YOUR LITTLE GIRL LOVES YOU TO PIECES!! :)

Difficult Days for Mom & Trista Update

2009-07-07T13:53:00.011-04:00

These past few days have been so difficult for me as I've headed back to work. I really thought I could handle the emotions as they came, but sometimes I just sit at my desk and weep. Just wanting to be home with my kids. I am hoping this is just the "first week back blues" and each day will get better. Sometimes work just seems so insignificant when you've been through such a huge ordeal. Then I snap back into reality and remind myself of Trista's mounding medical costs and the importance of good insurance. I also remind myself that I have a great employer that is willing to work with me throughout all of this and a wonderful mother-in-law to care for Trista when I'm not there.

Only time will tell what will happen. For now, I just plaster pictures of them everywhere at my desk and count the minutes until I'm home with them at the end of the day! I will get through this - just takes some time.

Enough about weepy me - now onto Trista! We received some preliminary results back on her pH probe test. She had 60 reflux episodes in 23 hours and 11 of them came up into her upper esophogus. That's all we know - the GI doctor had a baby on Wednesday last week so we won't hear his interpretation of the results and course of treatment until he returns.

She had her first set of vaccinations last Friday. 5 total (4 in her thighs and 1 oral). All you mom's out there know how yucky this part is. She was just cooing away and smiling at me when they were getting her thighs ready for the needle, then OH MAN the needles went in and she lost it!

Here she is later that day all tuckered out from the day's events...

Tomorrow morning we go in to see Trista's cardiologist for her clinic appointment and EKG. I hope to post tomorrow night with details on how her heart is doing. We hope to also see ENT to re-check her ears.

Happy 4th of July!

2009-07-04T20:41:00.008-04:00

Even though it's rainy and miserable here AND we had to postpone our party....
it's still 4th OF JULY and that is reason to CELEBRATE!

Yes, they are sitting next to a watermelon. Hey...it's a summer favorite, right? :)

I hope everyone had a wonderful 4th. I'm so happy to live in freedom - I HEART AMERICA!

More Antibiotic!

2009-06-30T16:54:00.002-04:00

I took Trista to Children's yesterday for the ENT docs to re-check her ears and as we expected, the antibiotic that she was on wasn't killing the infection. Apparently, she doesn't respond to the "Pennicilin" family, so they switched her to Omnicef to see if that will do the trick. So far, we haven't noticed a difference, but we will give it another couple of days. If this one doesn't work, we will be looking at getting the tubes put in ASAP.

No word yet from the GI docs about her probe test results. Should be sometime this week.
Here she is snoozing in her swing today...so comfy!

I head back to work on Thursday which will be a huge adjustment for all of us. I know Trista will be well taken care of by her grammy, but my heart aches not being with her full-time. She's our million dollar baby (literally), so we definitely need the good insurance that I get at my work. It will be fine, just really hard at first. :(

Everything else is about the same - just enjoying the summer and the beautiful weather today!

Happy 4 month birthday, Trista!!

2009-06-27T10:37:00.003-04:00

Trista- you are FOUR months old today!!!!

What are you up to these days?

You have learned to grab - you are most interested in your own hands

You smile when I talk to you and when I smile back at you

You turn to look at us when you hear our voices. Especially for mommy

You are so incredibly long

You weigh 9 pounds, 7 ounces and are in the 3rd percentile still

You are wearing 0-3 months size clothes and a size 1 diaper

You still like to eat about every 2.5 to 3 hours. You still get up in the middle of the night, but usually only once

You like to watch your big brothers when they are acting goofy

You are really starting to like your swing. It puts you right to sleep!

You like to ride in the car (most of the time)

You still love your bath and just chew on your little hands

Your little head is getting stronger and you can hold it upright for a good 15 seconds

You really like to arch your back like you are about to try and roll over

You've just recently found your voice and you like to talk, talk, talk

In the past 4 months you have been admitted to Children's Hospital 5 times

You are such a snuggle bug and love to be looking over mommy's shoulder

You are still on the Alimentum formula, but we hope to switch you over to something cheaper sometime soon :)

You still sleep in mommy and daddy's room in your bassinet right next to Mommy. Mommy cannot even imagine putting you in your room right now!

You have been able to stay home with Mommy for these past 4 months. Next week, Mommy will return to work and will miss you terribly!

You have pretty blue eyes and strawberry blonde hair

In the sunlight, you look like you have totally red hair

You are starting to get some rolls on your arms and legs which I LOVE to see!
Mommy calls you "Sunshine", Talan calls you "Trissa" and Daddy calls you "Baby Girl"

You are our miracle and we have never felt as blessed as we have since we've had you! Happy 4 month birthday!

Home Sweet Home!

2009-06-26T15:48:00.009-04:00

We're back home - whew! The rest of the test was pretty uneventful (which I am thankful for). We should have the results of her test within a week. Scott and Talan came by to visit with us for a few hours which was awesome. We really needed some company! :)

Daddy and his little angel

The proud big brother!

Me and my 2 angels!

Trista went to sleep around 8:30 last night. Sounds great, right? Nah - then she got up at 11:00pm refreshed and ready to hang out. So, we watched some Michael Jackson tributes then finally went to sleep somewhere around 3 or 4am. Can you say exhausted??

Around 10am they pulled the tube out and I was able to get her dressed and ready to roll.

While we were in the hospital, Trista kept tugging at her right ear. I mentioned this to the nurse practitioner and she suggested I contact her ENT doc when we got home. As soon as we walked in the door, Trista started crying like crazy and pulling at her ear again. She's been on this set of antibiotics for 1 week now. So, I called her ENT doc to see what they had to say. They are concerned that the antibiotic isn't working and that she needs something stronger. At first they wanted me to come back to Children's to have her seen this afternoon. I was at my wits end and asked if there was any way he could prescribe something over the phone since we had just come home from a 24 hour stay there. He agreed and now I am off to get yet another antibiotic. They want to try this over the weekend and see her on Monday.

Thanks for all of your prayers and messages. It truly helps during the ups and downs we have faced throughout Trista's journey. For now, I am ready for a nice and relaxing weekend!

Happy Friday, everyone!

Probe Test Update #1

2009-06-25T11:06:00.007-04:00

Here we are - it looks all too familiar! Trista has done awesome. Me, on the other hand, not so great. It was so hard to see her put through all of this again. Just brings back lots of emotions. Here's our new 'digs' for the night! :)

She was of course the star of the show as soon as she stepped foot in the hospital. They know Trista around here and always look forward to seeing her. Here she is 'talking' to the PCA. Of course, this was before they inserted the probe so she's still happy.

This is the guy that did the deed...he was the one who really made Trista mad! The probe was very similar to an NG tube, but much stiffer and thicker. They had a hard time getting it in - it took 3 tries.

So the tube that is in her is also hooked up to this blue machine. Whenever she makes a "reflux look" like gagging, arching, etc. I have to hit a certain button. This monitors what we're seeing an how it coincides with what the probe is showing.

After about 1.5 hours of non-stop crying, she finally relaxed and I was able to snap a shot. She's so wiped out from all of that crying! Trying to keep her from pulling out the tube is a full time job!

I was able to put her in her stroller and take her for a walk which was nice. It put her right to sleep.

That's it for now. I hope to post some more later on tonight.

Not looking forward to tomorrow...

2009-06-24T21:29:00.002-04:00

Just in case you can't read the onesie it says "Party in my Crib 2 a.m."! Perfect for Miss Trista...we always seem to be 'partying' it up around that time every morning!

Well, tomorrow is the day. Back to Children's for yet another overnight stay. She had a really, really bad day today with her reflux so this is good timing. I am really dreading this trip. It's not that it will be all that painful for her, but she's older and it just seems harder now to see her go through things like this. I'm sure she will do great (like she always does) and I will be the one crying holding her hand. UGH!

I plan to take my laptop with me so I hope to be able to send out some updates tomorrow. Until then, I wanted to leave everyone with some ADORABLE pictures of Trista today. Enjoy!

Now, I know I am biased but seriously...could she get any cuter?? :)

PH Probe Scheduled

2009-06-23T19:07:00.002-04:00

I heard back from Children's today and they have scheduled her PH impedence probe for this Thursday. Yes, this Thursday! It doesn't give me much time to prepare, but I really wanted to get it done before I return to work. Did I mention I am dreading the whole 'going back to work' thing, but I am so thankful I work for such a great company that has bent over backwards to be flexible with me. They really are the best!

Here's the scoop. We have to be there at 8am - they will insert the probe which will go into her nose and down to the lower esophogus. Again, this measures the amount of reflux so they can better treat her. This will be monitored for a 24 hour period. She will need to be there all day and spend the night. We should be released on Friday morning.

I don't have any new pics today. We were pretty busy with a trip today to the Aquarium with Trista, Talan, Alec and Jacob (Alec's little brother) then straight to the pool to cool off. They all had so much fun and they were all so good! I'll post some new pictures soon when "life" slows down a little bit!

Say a little prayer that all goes well on Thursday. I'll keep everyone updated.

Heart Hugs!

Long Day

2009-06-18T22:12:00.003-04:00

Today seemed like the longest day EVER! Pediatrician in the morning and then GI downtown in the early afternoon and ENT in the evening. Whew! I'm ready for bed!

Here's the scoop on the GI issues. They have switched her over to Protonix instead of the Prevacid to see if that helps. Sometimes this drug is more effective in treating babies. It's worth a shot at this point! They are also going to move forward with the PH impedance probe which is a cathedar that they will insert through her nose that will sit in her esophogus to measure the amount and acidity of her reflux. This will require an admission at Children's, but should only be for one overnight. After that test, we should have a better idea as to the degree in which she will need to be treated.

Now on to the ENT appointment. When we first got there the doctor tried to examine her ears, but was unable to due to how tiny her ears are. So, we had to go into another room where they had to strap her down (literally) and take a real good look at her ears with this crazy looking microscope thing. She was not happy about that at all and she let everyone know about it!

After examining her ears, the doctor gave me "the look" - ok, I'm getting kind of used to "the look"...nothing really surprises me anymore with her! He couldn't believe how bad her ears looked. He was dumbfounded that she was even able to function with the amount of infection and bacteria in her ears. Not to mention the fluid! TONS of fluid! This is most likely the reason she is experiencing hearing loss. So, the fix is heavy doses of more antibiotic (I am now on a first name basis with the Pharmacist at Kroger - ha!) and tubes in her ears. We can handle that. She will have to be under anesthesia for the procedure so the doctor would like to wait and see if she will be needing the GI surgery first - that way they could do them both at once. If she ends up not having the GI surgery, they will go ahead and put the tubes in anyway in a couple of months after the infection has cleared up. The doctor really thinks that having the tubes will correct her hearing problems. Thank you, Jesus! You've once again answered our prayers!

Well, that's a re-cap of the day. The kiddos are sleeping so I better take advantage of it and get some shut-eye myself!

Heart hugs to all!

More belly issues...

2009-06-17T13:29:00.003-04:00

Sorry I haven't posted in a while - it's been very busy around here! Here is an update on Trista...

Starting on Friday of last week, she was having an unreal amount of dirty diapers. Now we expected the dirty diapers to increase with being on the Azithromiacin, but not nearly this much! Literally she would have 10-12 in a matter of hours. Starting Saturday we stopped the Azithromiacin all together. It is just getting ridiculous and her little backside is all sore from the amount diaper changes! Thank goodness for Triple Paste - it's expensive, but it has been a lifesaver!

Soooo...we head back to GI tomorrow to see what is next. Total bummer because we thought this was going to be the solution for her. She also has her appointment with the ENT docs tomorrow evening to see where we are with her hearing loss. We are hoping it was just some fluid built up and nothing more serious. Pray for good news tomorrow! I'll try to update tomorrow night after all her appointments.

Here's a couple new pics of Trista today and another of Talan hanging outside by our pool with our neighbor, Madison. SO glad it's summer time!!!

Our 9-pounder!

2009-06-10T20:05:00.004-04:00

This morning was a little rough because Trista had 6 dirty diapers in a matter of 4 hours. That was concerning to the GI doctors (they didn't want it to move too fast through her system) so they asked me to bring her in for a quick weight check. Much to everyone's surprise - she now weighs 9 pounds 3.5 ounces! WOO-HOO! Something is definitely stickin'!

Since the meds are starting to help with her reflux we are going to keep her on it for at least a month. We are trying to buy some time in hopes that she grows out of it. Fingers crossed!

She has really started smiling and coo-ing a lot this week. It is so sweet! She looks like a baby bird with her mouth wide open all of the time. Too cute!

Good Day & More Pictures!

2009-06-07T22:30:00.006-04:00

Today was a good day for Trista. It was her 2nd full day on the Azithromiacin and it seems to be helping. Since it causes the formula to move through her system faster, she has had a significant increase in dirty diapers, but we will take that any day over her refluxing constantly!

Trista was even able to sit out by the pool (in the shade of course)...and I was able to snap a few photos of her.

And here is her face when she is trying to talk to Mommy. Oh, I could just eat her up!...

We should know more tomorrow about how long she will be on this new medicine. She takes it 3 times a day, plus Prevacid twice a day and Zantac once a day.

I almost forgot - Trista is now up to 8 pounds, 12 ounces!!! We are finally over the 8 pound mark! She's slowly starting to get some "rolls"...a beautiful sight to see!

Plan B

2009-06-05T18:36:00.003-04:00

The new formula didn't work out well at all. Trista has a serious aversion to new tastes and she was not liking it at all. Plus, after 2 1/2 days it had not made a difference in the amount she was refluxing. So, we now have to move to Plan B which is to start the Azithromiacin. She will take it 3 times a day. They have not given us a timeframe of how long she will be on it. We have a call with them on Monday to discuss how long she will be treated with this. Again, it is an antibiotic that increases gastric emptying. They are hoping that the formula will move through her system faster and won't sit in her belly long enough for the reflux to happen. We'll see how this works. At this point we will try just about anything!

Make sure you check on the new Video posted about Trista's Heart Journey!

Heart Hugs!

New Blog Design and Trista Update!

2009-06-03T17:12:00.003-04:00

Well, here is the new blog design! Send me a comment and let me know if you like it...I am pretty happy with it! :)

Now on to Miss Trista - today is day #2 on her new formula (NeoCate) and we're not seeing a big difference in her reflux. It still happens as often as it did on the Alimentum and it's MUCH more expensive. We're going to give it a few more days and see what happens. If this doesn't work, we will be moving on to the Azithromiacin which is an antibiotic that increases gastric empyting. We'll see if they still want to also do the PH impendance probe that would measure the reflux. More to post later...she's starting to wake up from her "cat nap"!

Heart Hugs!

2009-05-27T20:45:00.003-04:00

We continue to struggle with Trista's reflux. She is on both Prevacid and Zantac multiple times a day and she still experiences very severe reflux. After she eats, even up to 4-5 hours later, her milk still creeps back up. It is very painful for her and she struggles to breathe.
I talked to the GI nurse at Children's today. Since Trista is a "heart" baby, they have to take extra precautions when treating her. This is the process:

1. Try medicine (which we already have and they don't do a great job)

2. Do additional testing (look at her lower GI area to see if there is a problem)

3. Go back to the NG tube. It would essentially go in through her nose, bypass her stomach and empty out into the intestine. That way, her food would not be sitting in her stomach and wouldn't have a chance to move back up into her esophogus. This is more long-term.

4. Nissen Fundoplication Surgery. This is the absolute last resort and we want to avoid this if at all possible. From what the nurse told me, it is not something we want to put her through if it can be avoided.

The doctors had left for the day when I talked to the nurse, so she is going to consult with them to see what they would like to do next and call us back tomorrow. We would like to start with some additional testing and see what the results are before placing the tube back in.
We'll keep you posted as soon as we hear more.

A new blog design will be up and running late next week, so be sure to stop back by and take a look! :)

Heart Hugs,
Amanda

Happy Memorial Day!

2009-05-25T19:50:00.005-04:00

This was Trista's first Memorial Day and it has been a pretty rough one. Her reflux has been so bad today that it starts even when she is sitting straight up. I am pretty sure we are headed back to the GI docs at Children's this week to see what they have to say. Between the tears, I was able to snap a picture of her. She doesn't look too happy, but it's the best I could do!

Happy Memorial Day!

Happy Friday!

2009-05-22T21:21:00.006-04:00

Well, as you can see - Trista got to wear her first sundress today. Hair sticking straight up too! She had a good day today. I was able to take her out to lunch to see one of Grammy's friends, Marlayne. She also got a visit from Aunt Amber - she loves when Amber holds her!

As I type, she is crying in the living room while Daddy is holding her. This is definitely Trista's fussy time...6-10pm. So, if anyone wants to stop by and see her feel free to come around that time! You can hold her as long as you want! :)

Have a wonderful Holiday weekend! I know ours will be spent watching Trista's big brother, Alec, play in a baseball tournament. GO PIRATES!

2009-05-20T16:10:00.000-04:00

2009-05-19T13:25:00.000-04:00

Trista's First Blog and TOF 101!

2009-05-19T12:55:00.003-04:00

We thought it was time to start Trista's blog since many of you continue to ask about her. We are still wrapping our arms around everything she has been through recently with her open heart surgery at 12 days old. She is home and doing really well. We are still having issues with her severe reflux - the doctors are hoping she grows out of it...if she doesn't, surgery will be the next route to correct some of her GI issues.

She also had a repeat hearing test today back at Children's. The results are still showing some mild hearing loss in her left ear and moderate to severe in her right ear. This could still be due to some fluid build-up from laying for such a long period of time after her surgery. We now have to take her to an Ear Nose & Throat Doctor to see what they think. Just one more specialist to add to the mix! :)

I know her heart condition is still a little "fuzzy" for everyone, so I wanted to take a minute and explain exactly what she has.

What Is Tetralogy of Fallot?
Tetralogy of Fallot occurs in about 5 out of every 10,000 babies. There is no known reason for this. It just happens. Tetralogy of Fallot has four key features.

* Large Ventricular Septal Defect (VSD) - A VSD is a hole in the part of the septum that separates the ventricles—the lower chambers of the heart. The hole allows oxygen‑rich blood to flow from the left ventricle into the right ventricle instead of flowing into the aorta, the main artery leading out to the body.

* Pulmonary Stenosis - This is a narrowing of the pulmonary valve and the passageway through which blood flows from the right ventricle to the pulmonary arteries. Normally, oxygen-poor blood from the right ventricle flows through the pulmonary valve into the pulmonary arteries and out to the lungs to pick up oxygen. In pulmonary stenosis, the heart has to work harder than normal to pump blood and not enough blood can get to the lungs.

* Right Ventricular Hypertrophy - This is when the right ventricle thickens because the heart has to pump harder than it should to move blood through the narrowed pulmonary valve.

* Overriding Aorta - This is a defect in the location of the aorta. In a healthy heart, the aorta is attached to the left ventricle, allowing only oxygen-rich blood to go to the body. In Tetralogy of Fallot, the aorta is between the left and right ventricles, directly over the VSD. As a result, oxygen‑poor blood from the right ventricle can flow directly into the aorta instead of into the pulmonary artery to the lungs.

Together, these four defects mean that not enough blood is able to reach the lungs to get oxygen, and oxygen-poor blood flows out to the body. Tetralogy of Fallot must be repaired with open-heart surgery, either soon after birth or later in infancy.

On March 11, 2009, Trista had a complete repair to correct her heart defects. To do a complete repair, the surgeon closed the ventricular septal defect with a patch and opened the right ventricular outflow tract by removing some thickened muscle below the pulmonary valve, repairing the pulmonary valve and enlarging the peripheral pulmonary arteries that go to both lungs. So far, so good!

Will Trista Need More Surgeries?
After the first complete repair, residual problems may require the child to have more open-heart surgeries. It is very common for there to be 2 more open heart surgeries or possibly more. In Trista's case, she will most likely need another when she is around 15 years of age.

Heart Children "God's Special Gifts"

2009-05-18T12:38:00.000-04:00

When a heart child comes into the world the lives of many are forever changed
whether they knew before, after, or awhile after
to hear your child has a Congenital Heart Defect is hard to explain the fear, the worry, and faith often tested
strength may not always feel like enough
but proud parents they will always be
though they hoped was to have a healthy baby
one that can grow up without having set backs
one that when a child doesn't have to feel different or fear a thing
one that when a teenager doesn't have any limitations
one that when an adult doesn't have to have worry about the unknown
A parent of a child with a broken heart
comes to have a broken heart too
a heart not physically broken
but one that aches for their beautiful child
a child given to them from Goda child who came with a message
a child given as a precious, fragile gift
a child that will impact and inspire many
The odds are against them
the awareness needs to be spread
the support needs to be there
faith in God needs to be strong
Some parents may face their worst nightmare
their child becoming angels way too soon"How can this be?" no parent deserves this
it will NEVER, ever be fair
sorrow and pain, yet blessings too
only parents who walk this road
can truly understand how it feels
a hand to hold, God by their side for he had a plan
no matter how hard it is, God makes no mistakes
a legacy made and happy memories to hold
their child's life never in vain
their child's life was full of love
they will always be heart parents
they will always spread the message
Some parents watch their child hit milestones
see the happiness and see the sadness
they feel grateful and they feel blessed
the child is happy, but as they grow they know
they know they are different, special
when they get even a little sick, they feel scared
shots, pokes, check-ups, doctors
it is their life and they know it won't go away
"Will I grow old?" "Will I have surgery again?"
Oh the heart break at questions like these
but the answers are hard
many go like this:"Honey, God made you extra special.He loves you and is with you.know that he has a special plan just for you
and your family will always be here.I love you so very much!"Faith is a road that can be bumpy
these parents know
Others parents watch their child grow to be an adult
oh the joy, oh the happiness, oh the fear
and oh yes the worry is still there
but what does the grown heart child feel
A CHD adult feels thankful and blessed
they know God is with them
they have memories that are dark
that some may not even remember
they have felt pain that should not be felt
but they have love so stronga family that expands to even strangers
A broken heart adult has felt different at times
but feels like any other person
has felt worry and still has worry
lives to the fullest and takes things a day by day
had to grow up before their time
wants to spread awareness
wants people to know
Some are afriad to show their scars
others wear them as their badges of honor
some want to just be "normal"
others are content with the life they have
some need more support
others have all they could ever need
all have accepted their fate in their own way
Whatever the case, whatever the path
when a CHD child is born, the world spins
only those who have been the child
or have been the parent know
CHD's are not fair, but these children are extra special
their smiles literally come from the heart
but most of all they are...F-I-G-H-T-E-R-S~

By: Lauren Celeskey (Feb. 2008)Heart Child 21 years old

Trista's Heart Journey!

2009-05-17T19:51:00.001-04:00

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About Trista

2009-05-13T05:22:00.001-04:00

Trista Faith DeBruler was born on February 27, 2009 at 9:19am. Trista weighed 4.13 at birth. Around 20 weeks gestation, we found out through numerous ultrasounds that Trista had a serious heart condition - diagnosis was Tetralogy of Fallot. We were told Trista required open heart surgery around 4-6 months of age. On February 27th, Trista Faith was born. She was really tiny, but perfect. We were only able to hold her briefly before they had to transport her by ambulance to Children's. She did fairly well the first 5 days..then she had her first TET spell. It was only a few more days until she had her next TET spell and it was severe. We almost lost her. The doctors called us at 12am and told us to come right away. That was the day we needed to make the hardest decision of our lives. Open heart surgery at 12 days and only 4 pounds. Even with all of the risks, we felt we had only one choice and that was to undergo the full repair. March 11th was the big day. We call it Trista's new heart's birthday. She did great. She was put on a heart and lung machine and required 6 blood transfusions. She was able to come home on her 1 month birthday!