In the News ...

This picture was featured in yesterday's Tulsa World, Satellite section. The American Heart Association held a Congenital Heart Defect (CHD) awareness event at a recent TU Tailgate Party. Abuelo's catered the food and provided a balloon artist (hence the ladybug balloon). This year's Sweethearts and Mavericks interviewed the families as part of an ongoing project. If you want to know more ... click here to read the full article.

New Haircut!

Claira's 3-year-old big sister, tried out her new hair cutting skillz ... on Claira! After dangerously short bangs and a few spikes on top, we decided to help out the new "doo". A good friend shaped it nicely into her new adorable ... face-framing hair style. Very cute, thanks Dawn!

Happy Halloween!

She really was feeling a little "raggedy" that day. She's been running a fever since Thursday ... so she didn't trick-or-treat much. She went to a few houses after her Children's Motrin high kicked in, but that was it. Otherwise, she stayed home & helped hand out candy.
Don't you want just want to reach in and squeeze her?!

Another miracle ... except not so "Ordinary"

Many of you may remember Claira's heart buddy Manning (click here for previous post) who has been waiting for a new heart for the past few months. He has had several ups and downs, including being taken off the heart list due to intestinal problems. He had been intubated since April due to complications from a heart cath, and his heart was failing. Manning and his family had been sent to St. Louis to await his new heart, which put even more financial strain on the family and limited their time spent together.
Manning received his new heart on September 27th, let me share their experience with you through his mother's words from the hospital CarePages website (this is lengthy, but worth the time) . . .

Posted Sep 27, 2008 7:03pm
At 11:54 AM James and I received a call from the transplant coordinator that their was a possible heart donor for Manning. A few hours later we received news that it looked like a good donor for Manning and the heart was accepted. We met with the heart surgeon at 4:30 PM and he explained to us the process of the heart transplant surgery and that he will be taken to the OR at 6:30 PM. The heart transplant surgery takes about 7-8 hours normally. Manning was just taken to the OR and we gave him kisses goodbye. James and I are currently waiting in the OR waiting room and the nurse will give us updats every 1-2 hours. Thank you for all your prayers and support. We needs your prayers currently as he has getting a big journey ahead of him.

Posted Sep 27, 2008 9:12pm
At 8:56 PM the OR nurse came in and reported that Manning's chest is now open and the donor heart is in the air. Dr. Ghandi is retreiving the donor heart and it is minutes away. Dr. Huddelston will be Manning's heart transplant surgeon and the only information he could tell us is that the donor heart came from a 2 yr old child. Please pray for the family of this child. We feel so blessed that they made the decision to help others during their time of suffering. That is an amazing gift to give. James and I are very emotional at this point.

Posted Sep 27, 2008 10:27pm
At 10:16 PM the OR nurse came in and informed us that Manning's heart is now out and they are getting ready to sew the new one in. The nurse also took some pictures for us of the heart that I will be posting. Please keep praying for Manning, the donor family and the medical staff. James and I have so many different feelings and emotions we can not even describe it.

Posted Sep 27, 2008 11:59pm
At 11:52 PM the OR nurse came in and reported that everything is going well and his new heart is beating. He is still on the heart bypass at this time but will be finishing up the surgery in 1 to 1 1/2 hours. The nurse will give us the final report in 1 - 2 hours. James and I are very anxious to see our baby.

Posted Sep 28, 2008 1:12am
At 1:01 AM the OR Nurse came in and reported that they are currently sewing his chest up. She says that Manning is doing good and the surgery went well. She says the doctor will be out to see us in about 30 minutes and we should get to see our precious baby in about 1 hour. It has been a long day but James and I are so ready to see Manning. Thank you all for all your thoughts and prayers. Please keep praying. This process is very involved and there is so much more to go through. We are just so grateful to the family that gave our child this opportunity to live his life.

Posted Sep 28, 2008 3:14am
At 1:45AM Dr. Huddelston came in and informed us that the transplant went well. He said that Manning had alot of scar tissue that made it a little challenging but is not uncommon. He also reported to us that with the cross matching Manning has developed antibodies in his blood that would increase chances of rejection so he will have to be on a machine that exchanges his plasma which is a more aggressive anti rejection treatment. There are some risks and concerns with this but it is not uncommon.The doctor says that the most critical time after transplant is the first 6-12 hours. Once we get over that hurdle then we will focus on getting him off the breathing tube which may be challenging since he has been on it for the past 5 months, decreasing his pain and sedation drugs which will be a challenge since he has been on so much and feeding him which may also be a challenge with his past issues. At 2:00 AM we were allowed to go back to the CICU to see our baby. He looked so good. His O2 sats are 100, his fingers, toes and lips were pink, and his eyes were open. He already looks like a different baby.Manning, James and I have all had a long day. Peyton was the first one we told about his brothers transplant this morning. He is so excited and is ready for us to all be home together. I was so happy to have James here with me because he was actually planning on leaving Sunday morning before we got the news. Everytthing worked out well. We are going to rest now and I will post a new update in the morning. Thank you all for your continued support, thoughts, and prayers.

Posted Sep 28, 2008 1:02pm
Manning looks really good. He does not have much swelling and he is really pink instead of blue. I keep looking at his skin because I am so amazed by his color. Many transplant moms have described to me that they have a feeling of giving birth all over again after they see their baby for the first time after transplant. I have to say I feel the same. He looks so good I just want to pick him up and hold him but of course I can't. Manning still has many struggels to overcome. James and I had to give consent for Manning to be placed on a pheresis machine that is used to take his plasma out and put new plasma in. He has to be on this machine because he has developed antibodies in his plasma that could cause him rejection issues. There are some risks to being on the machine but it would be a much greater risk if he rejects his new heart. This process takes 3 hours and he will have to do it for the next 5-7 days. His heart also went into junction rythem because of the swelling of the heart and now he is on a pacemaker.These two situations does not happen with all transplant patients but is not uncommon either. This morning since we have been here he is having some problems with low blood pressure that they are treating with medication. James and I are so happy but still very worried as Manning still has a long road ahead of him. Please continue to pray. Please remember Manning is in critical condition and is still struggeling to fight for his life.

Posted Sep 29, 2008 2:10pm
Overall Manning is doing well. He had his 2nd day of Pheresis and is tolerating it well so far. He is still on the Pace Maker that is on the outside of his body. They tried to take him off of it but his heart went back into junctional rythem. James and I just can't get over how pink he is. We keep looking at his hands and feet because they have color. They were able to decrease some meds and of course they have already started him on the antirejection meds. They have also turned down the settings on the vent. Manning is of course still on the ventilator and is paralized and sedated. They will try to lift the paralytic off today and see how he responds to it. He is running a bit of a temp so they have a cool rag on his head and have turned down the temp in his room. James and I just feel so happy and so thankful. When we received the call fron the transplant coordinator Saturaday morning we were just on our way back to our apartment to put up some groceries. I remember looking at the phone number and I knew the prefix was from St. Louis. I looked at the time and it was 11:54. She told us that we had a possible donor for Manning. I was in complete shock and it did not seem real. She told us to get to the hospital within 30 minutes. When we dropped our groceries off at the apartment we heard the church bells ringing from the Catherdral Basilica. James and I would often go to the Cathedral Basillica to pray for Manning to receive a heart. James said, do you hear those church bells? He said, Manning's getting his heart and a little angel is getting their wings.Now every time we hear church bells we will always think of the day Manning got his heart. We are so thankful to the amazing family who gave our child the gift of life.

A few days after his transplant, she was able to hold him for the first time in months. He is doing well today ... and will be going home soon.

Claira is Two!

On October 8th, Claira officially became a 2 year old ... well, she's been practicing for a few months. She's strong, healty and very, very much ... herself!

Last month her SoonerStart speech therapist, Julia, gave her the all clear ... she's talking and eating like a pro! She says "A-tay" (OK), "Ebbles J" (Dad's nickname for her big sis) ... and if you ask her name she points to herself and says "ME"!
She's gained "fluff" and is in the 10th percentile ... up from 5th percentile at 18 months old.
She's beautiful and perfect! Always has been and always will . . .

In Loving Memory

Katelyn ...

August 23, 2006 - September 8, 2008

Katelyn was one of our "Mended Little Hearts" who lost her struggle with CHD after a recent heart surgery. Our thoughts and prayers are with her family today.

Bishop Kelley Partnership

(Check out this video Gavin's Mom put together.)

Make video montages at www.OneTrueMedia.com

The Bishop Kelley football team has partnered with Mended Little Hearts of Tulsa. Bishop Kelley requires their students to provide a specified number of service hours before they can graduate. Their coaches, one of which is Bailey's Dad (see post below), felt MLH would be a great way to help their players and our kids. These boys come to our meetings and help entertain the little ones, they were our lifeguards at this summer's pool party, and will be organizing and assisting in an upcoming fundraiser. Last night during half-time, each MLH child was escorted onto the football field by a player, while their names and CHD were announced. Most of the kiddos are little bitty, so a parent went as well. It was so fun for us, and I think the players were very respectful and touched as well.

(I'm not sure who's pictured here ... I just love the way the players are stooping to talk to the little ones.)
When it was Claira's turn, she and I walked hand-in-hand with Steven, her very own football player. All of the players were paired up with a child, except for two. Manning's (see post below) and Emma's; Manning was unable to be there because he is in the hospital waiting for a new heart, and Emma watched from above as she left this world several weeks ago at 3 months of age ... her player walked in her memory. It was touching to see the expression on his face, as it was obvious he understood the importance of his role last night. One other baby was escorted by his big brother, who was suited up in his Tulsa Memorial uniform.

Miracle Network Radiothon

The K95 Cares for Kids Radiothon is underway! The radio station is broadcasting live from the St. Francis Children's Hospital in efforts to raise money to bring more specialized care to the Tulsa area. Families have been invited to share their medical stories on air with hopes that someone will be touched and donate.

Claira's story will be aired on Wednesday, July 23rd sometime around 2:00 or 2:30 pm Central time. If you are not local, you can listen online. Visit K95FM.com then click the LISTEN LIVE! link to connect to their online radio streaming. Thank you for always taking an interest in Claira and our family. We hope to use our experiences to help other families in the future.

Welcome Home Bailey!

Not long ago, another "Mended Little Heart" came into our lives. Bailey was born with 2 hearts defects that were painfully similar to Claira's. Jenny and Brandon (Bailey's precious parents) and I met at a recent MLH support meeting. We exchanged phone #s and discussed the similarities at length. Bailey was beginning to show signs of a slowing appetite and Jenny worried she might have to go through the same eating difficulties as Claira. Gratefully, Bailey's cardiologist chose to hurry things along ... s0 at almost 3 months of age, Bailey's heart was repaired on June 27, 2008. Mom reports she is doing fantastic and is making up for lost time! Way to go Bailey! And kudos to Mom and Dad (Jenny and Brandon). We certainly know what a ride this has been for you guys.

It seems somewhat unfair for Claira to have had such a difficult time, and I've found myself asking what I did wrong. The answer is nothing. Prayers were said and prayers were answered. Perhaps God's will was for one family to experience and learn only to help another family in turn. In this way ... Claira's Journey is complete.

Visit Bailey's blog "The Beauty of Bailey" for more info on her heart journey.
http://baileysbeautifulheart.blogspot.com

Paying it Forward

Saturday I had the opportunity to travel to OKC to visit Manning and his family at the PICU in the Children's Hospital. Not long ago, 9-month old Manning was admitted to the PICU due to complications from a heart cath that was to determine the date of his second open-heart surgery, the Glenn. During the procedure an artery was punctured which led to a series of complications (for more information click on the "Manning" link on the side bar). It is also important to know that Manning's grandfather passed away the day before this began. For nearly 7 weeks, Manning's Mom and family have been rotating shifts at the hospital to ensure there is always a loved one at his side. Manning's parents live more than 2 hours from the hospital, and since Mom drives 45 minutes a day to work it is almost impossible for her to be with him daily. The insurance that is paying for Manning's care is provided by Mom's employment, so there are few options. Susan (MLH of Tulsa Coordinator) and I brought gas cards, cash for tolls, snacks, restaurant gifts cards, a soothing cd, and toys for Manning and big brother ... all donated by friends and members of Mended Little Hearts.
Manning's Mom was overwhelmed and worried she couldn't thank us enough. We both understood how she felt and told her the same thing everyone told me last year ... everyone knows we are in need and no thanks is necessary. I realized our experience with Claira last year has almost come full circle. I am now in a position to give back the support we received last year by supporting other families who are now struggling.
After our visit we met Brayden and his family. Brayden was born with Hypoplastic Left Heart Syndrome and had his first surgery at 5 days of age. He, however, has many other struggles with his new little body (for more information click on the "Brayden" link on the side bar). Brayden is blessed to have 2 very attentive and intelligent parents who are facing this challenge with a positive attitude.
I know both families would appreciate continued prayers on Manning and Brayden's behalf. These "heart babies" are very brave, and I believe they have much to teach us.

Another walk to remember . . .

We had a great time ... again! This time we were actually on time (I know, I know hard to believe for our family.)

We first met the other "Mended Little Hearts" at the Survivor tent, where Claira was given a red heart to identify her as a survivor (Mom got one too, because ... well, I was Mom!).

Alot of the kiddos there had repaired hearts, just like Claira. A few still were waiting for more procedures and even additional surgeries, like Ethan who is expected to have his third (and hopefully final) surgery next month.

It was so amazing to feel the support and understanding from so many different people. Many of the people there were simply trying to make a new, healthy start.

We wore our shirts with pride and made signs to let everyone know who we were walking for. I have a challenge for all you friends and family out there ... we want to have a huge group of "little survivor" supporters next year for the 2009 Heart Walk! Oh, don't you worry ... I won't let you forget. It's great exercise too!

T-shirt Order Deadline

Many of you have already ordered and I'm thrilled! For those of you who are interested in a shirt, I will need your information by Thursday ... that's tomorrow folks. I'm sorry about the rush, unfortunately the Heart Walk is just around the corner and we need to give our printer time to make them. If any of you ever need shirts for a project or a team, I would highly recommend this company. Jamie, my contact, is donating the cost of printing ... which is what allows us to give so much to the American Heart Association. Thank you Jamie!

American Heart Association Heart Walk

It's time again for the annual AHA Heart Walk. Last year's walk (what I call a Walk to Remember) was a healing experience as our family was preparing for Claira's surgery. Kaylee and T.J. gave up an chance to compete with their band in a city-wide contest, so that they could walk with us. Many of you reached out to our family and came to walk, donated to the Heart Walk website or donated to AHA by purchasing t-shirts ("Bless Her Heart").
We plan to continue participating in this event as long as possible. While Claira is repaired and healthy, many other children struggle with numerous surgeries. I believe there will come a time, through research funded by organizations like AHA, when children like Clayton will require only one surgery because of medical advancements. The medical community has already achieved so much, but there is so much more to learn.
If you would like to help Claira reach her fundraising goal, you can go to her American Heart Association Donation page ... or you can choose to purchase a t-shirt for $10.00, and we will give the remainder to AHA. The shirts are pink with brown baseball sleeves ... the print, in sports style, reads "SURVIVOR" with "Team Claira" underneath. Last year we sold over 100 shirts, and was able to donate over $500.00! The staff at Roosa Elementary wore the shirts on the day of her surgery to show our family their support. If you would like to order a shirt, please E-mail your request to eastmanpartyof7@yahoo.com. (I need to place the order the first week of April).

Meet Clayton . . .

Clayton is a precious little guy that has already survived 2 major heart surgeries, with 1 more to go. He has Hypoplastic Left Heart Syndrome, where the left side of the heart (the hardest working part) is underdeveloped. Years ago this was a death sentence, but with medical advances this little guy is thriving and looks beautiful!

We met Clayton and his mother last week in Oklahoma City after our "photo op" with the Governor and other Mended Little Hearts members. In the brief time that we visited, I knew this family was special. Clayton has an older brother named Colin who was born with the same defect in 2004. He spent 7 1/2 months of his little life in the hospital, and went through 4 surgeries. Colin passed away at 8 months of age, as his little body couldn't recover from the many surgeries.

I have felt such a connection with Clayton's Mom; she too wants to someday become a nurse to help children such as ours. Clayton has a website, click here if you want to read more about this amazing family.

Mended Little Hearts Group

Finally, a Tulsa chapter for Mended Little Hearts! Mended Little Hearts is a national organization that is dedicated to "connect families in crisis with others who have survived the shock of learning a child has a heart defect/heart disease, navigated the maze of medical decisions and procedures and mapped out a plan for the future." Our family is excited to be a part of this newly formed support group. I have already found comfort in visiting with other Moms who understand the fears and the need to over-protect that goes with these experiences. If you know a family that could benefit from their help, click here to get contact information.
Tom, Claira and I will be traveling to Oklahoma City next Tuesday where we will join other Mended Little Hearts for a picture with Governor Henry who just recently named February 7-14 "CHD Awareness Week".

Happy Hearts Day!

I have hope that someday...
When my son understands...
I'll sit him on my lap... and then...
He'll ask me of God's plans...
In my sweetest daydream...
He'll lift his shirt up high...
And ask mom am I different?
And then he'll ask me... why?
I'll get the chance to share with him...
The long journey before...
And tell him that he's very brave...
And God has plans in store...
I'll tell him of the battles...
That children like him face...
And how we must remember...
To always lean on grace.
That I have learned of courage...
Through the lives of those we've known...
And I am ever certain that...
We never walk alone.
That everyday's a miracle...
And life is to be treasured...
That hope and faith have brought us through...
And these things can't be measured.
That other's are in heaven now...
(Their live's tend to remind me)
That even when I run away...
Somehow...son...God will find me.
And when life seems too hard to bear...
(And signs become easy to miss)
Brave little souls seemed to whisper...
Have faith...you'll get through this...
Some might say...your heart's not strong...
And there are some things you'll just never do...
But...you can do most anything...
That you put your mind to.

I have hope that someday...
You'll do the same as me...
Your child will come running...then...
You'll set him on your knee...
And lift your shirt...for the hundredth time...
When your child says tell me again...
Tell me about your special heart...
And all of the the places you've been...
Tell me about the heart hero's...
The one's that they just couldn't save...
And how your mommy told you that...
They were so very brave.
I imagine that you'll smile then...
(As you smile all the time)
Then hold your child closely...
And say...Once upon a time...

Mother's can wish for such things...
They help the heart to cope...
Perhaps...it's even possible...
With faith and love and hope.

New "Mickey" button

Please use caution before you scroll down ... the following image may be sensitive to young viewers.

Claira's Mic-Key button was removed by divine intervention ... okay, okay ... it was yanked out (accidentally!) by her big sister Madalyn. She was pulling her out of the crib and because she's a little short she had to slide her over the railing. Pop! It came out! Immediately after they both fell to the floor and Claira started crying. Her Dad ran in to check on them both but had no idea the tube was gone ... we all thought she was crying because she hit her head on the floor! Hours later it was discovered when I was getting her ready for bed. While gracefully fighting a severe meltdown I called the surgeon and he said ... (you can look at the picture now)



Let's leave it out! Yes folks you heard me ... no more Mic-Key button, no more tube! In fact after her last visit with the cardiologist she has no significant heart issues whatsoever! Oh happy day!