Sunday, February 13, 2011

CHD Awareness Week - Day 7!

Heart Babies that we Love!

We appreciate everyone who stops by here to read our story, but we have other friends who need the support as well.  Below is a list of our friends (in no particular order) who happen to be going through similar trials as us.  Please pay them a visit and remember them in your prayers.

Bowen (HLHS) -

Liam (TOF) -

David (HLHS) -

Ethan (TGA) - or

Maribeth (HLHS, adult) -

Grace (HRHS) - or

Jameson (HLHS) -

Jacob (several CHDs) -

Emily (several defects) -

Also, don't forget that we have updates just for Tucker at his page,

Thanks again for the support this week during CHD Awareness Week! I will be updating again tomorrow with some new pictures from this weekend.

With love & Heart Hugs!

Trent, Dena, & Tucker

Saturday, February 12, 2011

CHD Awareness Week - Day 6!

7 Reasons We Are Happy to Be CHD Parents

1.  Because God loved, blessed, and trusted us enough to have a special baby with a special heart!

2.  Because his heart is half the normal size, which means we get to love him twice as much.

3.  Because through this process we have found out what great family and friends that we are blessed to have supporting us.

4.  Because we have made lots of new friends in the CHD community.

5.  Because through Tucker, we have been able to share an amazing story about God's unending love and the miracles that can occur with him!

6.  Because we are guaranteed to never have a "normal" or "routine" day.

7.  Because every time we see his scar, we are reminded of what a miracle and blessing ALL babies are to their parents!

To ALL parents who read this page: It is SO important to get your kids checked for CHDs, regardless of their age. Most defects are diagnosed at birth, but many aren't caught until later in life and that can be a dangerous prospect! Most athletes who die from sudden heart failure are found to have an undiagnosed CHD. Also, how many babies who die of SIDS actually had a CHD that was missed.

Don't know how to get your child checked? The easiest way is to use a pulse oximeter, which can be found at any doctor's office. It is a totally non-invasive test and only takes a few seconds. If you are expecting, you should INSIST on having your baby checked with a pulse oximeter immediately after birth and then again after 24 hours. If they had done this for us, Tucker would have been diagnosed much sooner. Tell your OBGYN to put it into your birth plan.

Here is some food for thought: The painful heel prick test that's standard for ALL newborns, checks for Phenylketonuria, affecting 1 out of 10,000 babies. Congenital Heart Defects are more lethal and afflict 1 out of every 100 babies, yet the simple, non-invasive, non-painful diagnostic tool, the Pulse Oximeter, which can help detect many CHDs, lies unused in the nursery.

Thank you to everyone who came out to the Blood Drive today, we had a great turnout!

With love & Heart Hugs!

Trent, Dena, & Tucker

Friday, February 11, 2011

CHD Awareness Week - Day 5!

7 People Who Helped Save Tucker's Life

1. First and most importantly, our amazing God and our lord and savior Jesus Christ (Philippians 4:13).

2. Mary, the lactation consultant in McKinney who first noticed something was wrong. If it hadn't been for her keen eye and quick thinking, we would have been discharged from the hospital and Tucker would have died in his sleep that night.

3. Dr. Reyes, the on-call pediatrician in McKinney who caught the murmur. Even though he is not our pediatrician anymore, we are still very thankful for Dr. Reyes, because he was the first person to recognize that the problem was with Tucker's heart.

4. Dr. Lucena, the neonatologist in McKinney who decided to send Tucker to Plano for further testing. If Dr. Lucena had decided to keep Tucker in McKinney for even 30 minutes longer, he would not have survived.

5. American Medical Response ambulance team, specifically Glen and Misty, for being so careful during transports to two different hospitals. Also, Misty kept us updated while they were working on a diagnosis in Plano and she was the first to tell us that something was horribly wrong. She could have waited and let the doctors tell us, but she knew that her gentle, motherly way would be better for us.

6. Dr. Tim Thomas, our pediatric cardiologist, for catching the true culprit and sending us to Medical City. He knew immediately that something was seriously wrong and made quick decisions that helped save Tucker's life. Since then he has become as much of a friend as a doctor to us. We thank God everyday for Dr. Thomas and his wonderful wife, Andrea!

Dr. Thomas with Tucker and Heart Friends

7. Last, but certainly not least, Dr. Eric Mendeloff, the amazing pediatric heart surgeon that fixed our baby's heart. Dr. Mendeloff is a master of his craft. He can repair hearts that are only the size of a strawberry and work on blood vessels that are only millimeters in diameter. He is also special because he is not like any other surgeon that I have ever met, and I worked in a hospital for 3 years. He is not arrogant, he listens to his patients and parents, and he uses his time and his money to support our group, Amazing Little Hearts...he is our "Rock Star"!

Dr. Mendeloff and Tucker

There are many more people who played a part in helping to save Tucker's life, not to mention all the people who helped us through the roughest of times and kept us sane!  We could not have made it without the love and support of all of our family, friends, and co-workers!

Thank you for keeping up with us and this blog and please take a minute to write something in the guestbook and/or share this site with someone else.

Our last event for CHD Awareness week is tomorrow. We are having a blood drive and party at Medical City Children's Hospital tomorrow afternoon.  The blood drive will be from 10am - 4pm and the party will be from 10am - noon. Please join us and help support our kids. Also, the blood supply in Dallas is dangerously low, so if you can donate, we REALLY need you!!!

With love & Heart Hugs!

Trent, Dena, & Tucker

Thursday, February 10, 2011

CHD Awareness Week - Day 4!


Ask for help!  It is hard to ask people to help you, but it is absolutely necessary. This and the next one were the hardest for me & Dena. It goes against everything we are taught to ask for help, it shows weakness, etc. There are thousands of excuses, but you can't do it alone! 

2.  Accept help that is offered!  People want to help and it is okay to take them up on the offer. In situations like this, people feel like they need to do something for you, let them! Whether you let someone bring you dinner, let them clean your house, let them do your laundry, let them give you money, or simply let them pray for you...accept it gracefully and humbly. They will appreciate and you will feel better!

3.  Join a support group.  You can do this only when you are ready. Some are ready before others, we wanted the support and friendship immediately. Amazing Little Hearts is a great support group in the Dallas area, you can send me a message for more information!

4.  Ask questions!  Ask lots and lots of questions. Make sure that you understand what is happening with your child. This is one of those times where there are NO stupid questions! If you need a doctor to draw pictures for you...ask, if you need a nurse to re-explain something...ask, whatever the question, miscommunication, or misunderstanding, asking a question can usually solve the problem.

5.  Speak up!  You know your child best. Sometimes you have to follow your gut and speak up. Doctors play a huge role in our children's lives, but they don't know everything. If something doesn't seem right to you or someone is not listening to you...SPEAK UP! If they won't listen, find someone who will!

6.  Appreciate your doctors, nurses, etc.  They are taking good care of your kids. They want what is best for your kids. Remember that they are people too, they have bad days, they make mistakes, they have real lives outside of the hospital or office. Make sure you tell them thank you, send them a card, tell their supervisor how good they are, be patient!

7.  Appreciate each and every day with your little one!  Some parents are not as lucky and don't get to have their kids with them, if you are in the CHD community, you know this is true! We all have friends who have lost their angels, so don't let the little things make you lose sight of what is most important! It is especially important to remember this when things get tough!

I want to leave you with another CHD poem:

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.

A man and a woman embrace…
Their baby is in surgery…
They long to see her face…
They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
The tiniest hearts are repaired.

A child’s growing fast…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Her child seems so strong.

Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
A family says goodbye…

Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Make time to tell someone you know…
“I’ve been changed by a heart defect”.

Author - Stephanie Husted

With Love & Heart Hugs!
Trent, Dena, & Tucker

Wednesday, February 9, 2011

CHD Awareness Week - Day 3!

7 Ways You Can Help Fight CHDs
  1. Donate Blood - Any time! Almost all CHD warriors need blood or blood products at some point during their treatment, most need it multiple times. Find out ways to donate with Carter Blood Care. Or donate on Feb 12, 2011 at Medical City Children's Hospital from 10:00am - 4pm! Amazing Little Hearts will be there, join us! Many people donated blood for Tucker when he was in the hospital the first time, but this is needed constantly, so donate blood as often as they will let you!
  2. Donate Money - Research for CHDs is severely lacking, but the group doing the most for our kids is the Children's Heart Foundation. You can get more information about the Children's Heart Foundation and make a donation at  You can also donate to two local organizations that are doing great things for local CHD kids:  Amazing Little Hearts and the Chloe Duyck Memorial Fund
  3. Support A Group - like Amazing Little Hearts! Amazing Little Hearts CHD support group works very hard to take care of our CHD families and kids we do many things throughout the year, like providing necessities and meals to families who are on a prolonged hospital stay and donating toys for the kids to play with while in the hospital. Find out more information about how you can support ALH at:
  4. Become an Organ Donor - Check your driver's license. Is Organ donation noted? If not, sign up here. Click on 'Becoming a Donor'.
  5. Educate Others - Tell everyone you know about CHDs and share our story and others' stories.  CHDs are devestating, yet many people don't know about them.  If you are expecting or know someone who is expecting, get the baby's blood oxygen levels checked immediately after birth and again after 24 hours.
  6. Support CHD Families - If you are reading this, then you obviously play a role in supporting us and Tucker. You can find links to other CHD families in our "Resources" section. Make sure you leave us a message in the Guestbook when you visit, encouraging words are always great!
  7. Find Another Cause - While CHD research and awareness are very important to us, there are many other noble causes out there. If there is another cause that is near and dear to your heart, support it!
Thanks for visiting us this week and thank you for helping us spread awareness for CHDs.  If you can possibly make it out to donate blood on Saturday, we would REALLY appreciate it!

With love & Heart Hugs!

Trent, Dena, & Tucker

Tuesday, February 8, 2011

CHD Awareness Week: Day 2!

7 Facts about CHD's
1. CHD's are the #1 birth defect and the #1 cause of birth defect related deaths.

2.  About 1 out of every 100 babies born each year has some type of CHD. About 4-8% of those children will have Tucker's defect, Hypoplastic Left Heart Syndrome.

3.  This year approximately 4,000 babies will not live to see their first birthday because of CHD's, which means that nearly twice as many children will die from CHD's in the U.S. this year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD research.

4.  Though research is still ongoing, at least 35 CHD's have now been identified.

5.  Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months or even years after.  In some cases, CHD's are not detected until adolescence or adulthood.  (Remember that Tucker almost died because his diagnosis was not made sooner.)

6.  It is a proven fact that the earlier a CHD is detected and treated, it is more likely that the affected child will survive and have less long-term health complications.

7.  CHD's strike children without regard for health of the mother/father, economic level, ethnic origin, gender, geographic location, or religious belief.

And one extra:  The American Heart Association directs only $0.30 of every dollar donated toward research.  The remainder goes toward administration, education, and fundraising efforts.  Of that $0.30 that goes to research, only $0.01 goes toward pediatric cardiology research for CHD's!

Thank you for taking the time to read my posts this week.  This is a very special week for us and it means a lot to have you guys visiting and writing in our guestbook.

Please join us in praying for a new CHD family.  We were introduced to Vince & Alexis this weekend and they just found out that they will be having a little girl with HLHS.  They are a young couple dealing with this tough news and trying to make sense of it all.  Please lift up Vince, Alexis, & baby Scarlet!

With love & Heart Hugs!

Trent, Dena, & Tucker

Monday, February 7, 2011

CHD Awareness Week, Day 1!

This week is Congenital Heart Defect Awareness Week! Each day I will post something about CHD's and how they have affected our lives.  Please support Tucker and his friends by sharing these things, sharing the link to our page, and by posting encouraging words in our guestbooks.

CHD Awareness Week, Day 1:

7 FAQ’s
  1. What is a congenital heart defect? CHD’s are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant. Defects range in severity from simple to problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
  2. Who is at risk to have a child with a congenital heart defect? Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of CHD, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
  3. How many people in the United States have a congenital heart defect? Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 40,000 babies are born with a defect each year. Tucker has Hypoplastic Left Heart Syndrome (HLHS) and it occurs in 4-8% of babies with CHDs.
  4. Why do congenital heart defects occur? Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
  5. How can I tell if my baby or child has a congenital heart defect? Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.  The easiest way to know for sure is to have your baby's blood oxygen levels checked.  All new parents should ask for this to be done immediately after birth and then again after about 24 hours of life!
  6. How serious is the problem? CHD’s are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHDs in the United States each year as die from all forms of childhood cancers combined.  (author's note....Can you believe this statistic??  Another fact is that 5 times the amount of money spent on CHD research is spent on childhood cancer research!!)  Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
  7. Are things improving? Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.
CHD's are everywhere!  I cannot tell you how many people that we have met, that when they find out about Tucker, they know someone who has a CHD or had one themselves!  So, why do people not talk about CHD's the way they do about the other childhood diseases/disorders???

The fundraiser that we had at Durkin's Pizza tonight was awesome.  The owner of Durkin's said that they had never had that many people eat on a Monday night before and they had definitely never had that many people at a fundraiser.  The food is awesome, so you should check it out sometime.  We will probably be having some more events there in the future, so join us!

Don't forget to help us raise awareness!!!

With love & Heart Hugs!

Trent, Dena, & Tucker

Sunday, February 6, 2011

CHD Awareness Poems

CHD Awareness Week officially starts tomorrow.  I will be updating each day this week with some facts and pieces of our story.  Please help us honor Tucker and the other CHD Warriors and Angels by sharing our updates or linking people to our websites.

I thought I would kick off the week a day early by sharing a few poems about CHDs and such:
½ An Angel’s Heart
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared.

He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

A Mother’s Perspective
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 him…(I’d waited so long)
It’s knowing that I need to help him grow strong…
It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his 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 his nails look blue?
It’s cringing inside at what he’s been through.
It’s dozens of calls to his 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 him sleeping…
his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)
It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’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 him 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 a brave little boy who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow

A Father's Heart
A man walks through the double doors,
His eyes tell quite a story,
Although he has grown weary,
He still gives God the glory.
His child lives within these walls,
As many children do,
Look high up on the sign, you’ll see
That it says…ICU.
The nurses nod as he walks in,
And sets down all his things,
Although he knows what to expect,
Somehow it always stings.
He bends to kiss his sleeping child
His hands stroking soft hair,
And everyday the nurse can hear,
This tired father’s prayer.

Lord, please watch my child today,
And let him know your here,
Give him strength so he can fight,
And calm his every fear.
Wrap your arms around him,
The way I wish I could,
Remind him just how much he’s loved,
Remind him life is good.
I feel so very helpless,
Not sure what I can do,
I cannot even comprehend,
The things that he’s been through,
Give me strength to fight for him,
And help me understand…
Help me to accept your will…
No matter what the plan.
Lord, I know you’ll answer me,
And yes, I know you care,
Thanks again for hearing,
One father’s heartfelt prayer.
If someone stopped to ask him,
Are things going alright?
He’d feel no need to mention,
He didn’t sleep all night.
If we were given just a glimpse…
If we could see in part…
What thoughts and hopes are there to find
Within this father’s heart?
A father’s perspective…
My child has a heart defect,
Its “my job” to be strong,
And tell my wife things will be fine,
(And pray that I’m not wrong)
And still the bills need to get paid,
And things need to be done,
And it’s so hard just sitting here,
“I want to hold my son!”
I lean down as I watch him breathe,
“Keep fighting”, is my plea,
“I thought I’d teach you to be brave,
“But son, you have taught me”.
I hear the beeping of machines,
(They help my child live)
I wish that I could take his place,
(There’s nothing that I wouldn’t give!)
To have the faith and strength I need,
To hold back all my tears,
To say I know he’ll be okay,
Despite all of my fears.
I”ll only lose composure,
When no one’s here to see,
I will be the “strong” one,
As I’m supposed to be.
A daddy says,” Come to my arms,
I’ll chase all those monster’s away”,
I cannot change God’s plan for him,
But I can hope and pray.
A daddy needs to cry sometimes,
And God must see right through,
That ” tough daddy exterior”,
For He’s a daddy too.
~Stephanie Husted

I hope that these poems give you a little insight into our lives and our love for Tucker!

Don't forget the ways that you can get involved this week:

Monday, February 7 @ 4:30-10pm - Dinner at Durkin's in Allen, TX - A portion of all money made at Durkin's this night will go to our support group, Amazing Little Hearts, and will be used to bless other heart families that are in the hospital.  Durkin's Pizza is officially in Allen, but it is probably more like Frisco/McKinney.  The address is 8930 Hwy 121 in Allen and is at the intersection of 121 and Custer on the North side. Join us for dinner and help support the cause and raise awareness!!!

Saturday, February 12 @ 10 am - 4 pm - Blood Drive at Medical City Children's Hospital, Dallas - Almost all of the heart families use blood products at some point in their treatment.  Donated blood supplies are always depleted and this is one of the easiest way that you can support Tucker and the cause.  Come out and donate, see the new Children's Tower, and see some of our Heart Warriors!

You can also change your Facebook profie picture to one of the CHD badges here:

Thanks for all of the love and support this week!  Be sure to check back for updates and to share our page with a friend!  We hope to see EVERYONE tomorrow night at Durkin's Pizza!!!

With love & Heart Hugs!

Trent, Dena, & Tucker

Thursday, February 3, 2011

CHD Awareness Week/Month

One of the most important weeks of the year for us is quickly approaching!  February is CHD Awareness Month and February 7th-14th is CHD Awareness Week.

Since Tucker is Heart Warrior and CHD Survivor, this week has become a huge part of our lives.  We want to do everything that we can to help other CHD families and to spread awareness about CHD's so that maybe others won't have to experience the things that we have some day!

During CHD Awareness Week, I will be posting a new update each day with facts and important information about CHD's.  You can help us spread awareness, help us prevent these problems from happening to others, and help us raise money for research by sharing this information and/or linking people with this site and others or by attending the following events.

Here is a list of upcoming events:

Monday, February 7 @ 6:30 pm - Dinner at Durkin's in Allen, TX - A portion of all money made at Durkin's this night will go to our support group, Amazing Little Hearts, and will be used to bless other heart families that are in the hospital.  Durkin's Pizza is officially in Allen, but it is probably more like Frisco/McKinney.  The address is 8930 Hwy 121 in Allen and is at the intersection of 121 and Custer on the North side. Join us for dinner and help support the cause and raise awareness!!!

Saturday, February 12 @ 10 am - 4 pm - Blood Drive at Medical City Children's Hospital, Dallas - Almost all of the heart families use blood products at some point in their treatment.  Donated blood supplies are always depleted and this is one of the easiest way that you can support Tucker and the cause.  Come out and donate, see the new Children's Tower, and see some of our Heart Warriors!

Monday, February 7 - Saturday, February 14 - CHD Awareness Updates - These updates will be taking place on this site and all of our friends' sites.  Please help us spread the word and link people to the sites!

There may be other events that come up, if so, I will update as the information becomes available.

Wanna know how you can get involved?  The BEST way to help us this week and to spread awareness is to share the information that we will be providing...anyway you can!  Post it on Facebook, post it on Twitter, send it in an email, tell a coworker, friend or family member what a CHD is, how common they are, and how they can be prevented.  The more people who know about CHD's, the more lives we can save!

If you have any questions or need more specific information about CHD's, Tucker's defect, how you can help, where you can donate, etc., don't hesitate to leave us a message here, email us, or call.

With love & Heart Hugs!