Sunday, November 4, 2012

The Power of a Wish

If you could have one thing in this entire world, what would it be?  If you could have one moment in time free of worry and stress and grief from all of your day’s turmoil, what would you wish for?  When you find yourself enduring the very toughest times and each day you search for the slightest glimmer of hope, where do you escape to in your mind?  What would you trade for one week away from whatever it is that ails you?  I am sure that each and everyone one of you reading this has had moments in your lives when you simply wanted to run away, when the stresses seemed to be overflowing, and all of the negativity in life seemed to be winning.  Yet, few of us have ever had to go through the struggles that Carter has had to face in his short life.

As you may know, Carter was born with Hypoplastic Left Heart Syndrome; a condition that would have proven fatal in the very early days of his life if not for a lifesaving open heart surgery within just a few weeks of being born.  He then had to undergo a second open heart surgery at approximately 6 months of age, the second in a three step process as a solution to the Hypoplastic Left Heart Syndrome.  Carter was slated for his third procedure around the time that he would have turned 2.  However, it was determined that his condition was such that the third procedure was not an option, and instead he was put on the heart donation list.  On February 7th 2012, he received the gift of a new heart.  Just 2 days later, he turned 2.  Since that time Carter has been in recovery and is doing quite well.  The first six months post-transplant are the most dangerous because of a weakened immune system.  Carter made it out of that danger zone and continues to live each and every day as a blessing.  And he is a true blessing to everyone that has the privilege of meeting him.  This two year old boy can melt any heart with a smile, and his eyelashes steal all the ladies’ hearts.

Not long ago, Carter’s family was contacted by the Make-A-Wish foundation of Washington,  Once Carter was stable enough, they wanted to grant him and his family a wish.  When they asked Carter what his wish was, that thing that could make it all better if only for a short time, his answer was that he wanted to meet SpongeBob!  Poof!  Wish granted.

The Make-A-Wish Foundation made it all happen.  They flew Carter, his mom, dad, sister Madison, and brother Clinton to Orlando Florida from Seattle Washington to meet SpongeBob.  But they didn’t stop there.  It started with a kickoff celebration in Seattle where the whole family was invited to participate and Madison and Clinton as well as Carter were treated like superstars.  It was at that point when the family realized the extent of the wish that was being granted.  They would spend a week in Orlando with passes to Sea World, Universal Studios, and Walt Disneyworld Resorts.  In addition to all of this they put the family up in a villa at Give the Kids the World,, where they could be around other families in similar situations and celebrate in the simple joys of seeing their children enjoy life and dance without having to worry about lab results and the next doctor’s appointment.  Every detail was taken into account, from transportation to and from the airport, escorts through the security at the airport, as well as the Seattle Firemen and Policemen coming out to wish Carter a good trip.

While in Orlando they all got to meet the Disney, Universal, and Nickelodeon characters.  Mickey, Shrek, the princesses, and so many more!  Carter’s favorites were the princesses (remember what I said about his lashes…lady killer!)  Of course there was SpongeBob!  Carter will tell you that was his favorite part, but his mom will tell you that he was frightened of all of the characters and would only go near them if Mom or Dad was holding him.  Everywhere they went that week they were treated with amazing care and support.  They even got to be in one of the parades down Main Street at Disneyworld!  They got time alone with all of the Disney princesses to play tag, and got brought up on stage to Dance at Disney Studios.

Melting Hearts
What amazes me about the entire story is not that everyone treated Carter like a superstar, but the extent that they went through to make sure that his parents had a stress free weekend, and that Madison and Clinton were treated like superstars too!  Carter’s condition is one that the entire family is experiencing and this wish was granted for each and everyone one of them.

Stars of the Parade with Donald
Carter’s mom said that the greatest blessing that Make-A-Wish provided was the gift of a stress free, worry free week where they could enjoy a vacation with the entire family and feel for just a short time like there was no looming stress or fear of transplant rejection, or lab results waiting for them when they returned, or the possibility of Carter coming down with the flu and ending up in the hospital for weeks at a time.  For a while, just a short while those fears were gone.  And they got to see their children’s faces light up when they met their heroes, SpongeBob, Stitch, Cinderella, and so many more.

I am so amazingly moved and thankful to the Make-A-Wish foundation, Give the Kids the World, Universal Studios, Nickelodeon, Disney World, and all of the volunteers and donors who make these kinds of miracles happen.  There are so few truly happy stories in the world that I needed to share this one for Teresa, Erick, Madison, Clinton and Carter.  You are all an inspiration to me and many more.

A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep
Have faith in your dreams and someday
Your rainbow will come smiling thru
No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true

Prince Charming

The Family with SpongeBob

Tuesday, August 7, 2012

Carter- 6 Months Post Transplant

Today marks a very significant milestone for Carter.  Six months ago, he received the life giving gift of a new heart.  In these short six months Teresa and Erick have been very careful to ensure that Carter's sensitive immune system was not affected by outside germys and goopies (technical terms).  Carter's immune system is still weaker than that of most healthy two year old boys, and his doctors continue to closely monitor blood levels, heart rate and other indicators of potential trouble.  His visits to Seattle Children's Hospital are fewer than they were in the early months, but they still continue.  Each day, week, and month that passes is a gift for Carter and is another day where he gets to play with his friends and family.  Thank you as always for everyone that is following Carter's story.  He is a true inspiration!

Sunday, May 27, 2012

Carter Update-- A Little Over 3 Months Post Transplant

On February 7th this year, Carter received the life saving gift of a heart and underwent heart transplant surgery.  And on the 29th of February he was released from Seattle Children's Hospital and allowed to go home to begin his long recovery.  It has been just over three months since his surgery, and nearly three months since he has been home.  Teresa and Erick continue to redefine what is normal for their family.  Because of Carter's sensitive immune system, they had to take their other two children out of school to reduce the risk of introducing germs into the household.  This meant that Teresa and Erick simultaneously took on the responsibilities of home care for Carter and home schooling for Madison and Clinton.  In spite of the new challenges that appear nearly every day, Teresa, Erick, and the entire family are so very blessed to have Carter at home.  Carter continues to have to make frequent trips to Seattle Children's Hospital to monitor his condition and to manage the ever present risk of rejection of the transplanted heart.  He has his ups and downs, good days, and bad days, but every day is a gift!  Teresa and Erick try to stay positive, but have learned that even though the transplant surgery was successful, they will have to fight for Carter's health on a daily basis.  In spite of these ongoing challenges Carter is a happy boy who is having fun with his brother, sister, and his cousins.  Teresa and Erick want to make sure that anyone that follows this story know that they are so very gracious for your continued support and prayers.

Wednesday, February 29, 2012

Home Sweet Home

Carter has reached another major milestone!  Today, he was released from Seattle Children's Hospital.  How absolutely amazing.  Teresa, Erick, and Carter are now at home with Madison and Clinton for the first time since early January.  Carter has had major surgeries in the past and been able to return home before, but this time he goes home with the opportunity to fully recover instead of waiting for the next surgery.

While everyone is overjoyed at this major step, it is important to understand that Carter is still in the early stages of recovery and is very susceptible to illness and infection.  Teresa and Erick have undergone significant training from the experts at Seattle Children's to teach them about Carters many medications, strict timelines for administering those medications, Carter's diet requirements, and cleanliness standards for the home.  Basically they have been told that their home has to be an extension of the hospital to ensure that the has a safe and healthy recovery.  This is so serious that they had to take Madison and Clinton out of kindergarten and preschool because they can be exposed to too many risks that can be brought back to the home.  Also for this reason they are under strict restrictions on visitors to the home.  Teresa and Erick know that so many friends and family want to see Carter, but please know they have to be very protective of him and his fragile health at this point.

As always, your support has been a true sense of strength for the entire family!  Thank you so much for all of your continued prayers and support.

Also, as a reminder, we are still auctioning off handmade baby clothes from  Please see the blog entry from February 27th for more information on the auction and photos of the clothes that are being auctioned off to support the Carter Fund.

Monday, February 27, 2012

KristyJane Baby Clothes Auction to Support Carter Fund

Carter continues to recover day by day at Seattle Children's Hospital.  Today he even got to go on a little adventure outside.  His growing strength is inspirational.

The support that Carter and his whole family have received from friends and family has also been very inspirational.  This week, we have been blessed with a donation of beautiful handmade baby clothes from Kristy Lombardo.  Kristy is a family friend, and is originally from the same small northern California town where my family is from.  Kristy donated her time and skills in the design of these adorable outfits to be auctioned off to support the Carter Fund.  If you are interested in any of the outfits pictured below please send an email to me at and the amount that you would like to donate.  The outfit will go to the highest bid that is sent in by midnight March 8th.  The winners of each outfit will be notified on March 9.

1) Specially Designed Heart Awareness shirt and bib (1-2year)
2) Whale Onesie and Bib (12mo)
3) Bird Onesie (9-12mo)
4) Green Star Onesie (6-9mo)
5) Dark T Onesie (6-9mo)
6) Twitter Onesie (6-9mo)
7) Scull Onesie (12mo)

For more information on Kristy's designs you can go to her website,

Stylish. Practical. Fun
Handmade Baby Gear

Wednesday, February 22, 2012

2 Week Post Transplant

It is a little over 2 weeks since Carter had his transplant.  We are so very happy that he is out of the ICU and is on the regular ward floor.  He was able to see Madison and Clinton this last weekend, but unfortunately Clinton was sick so his weekend trip was cut short.  He couldn't be at the hospital with Carter when he was sick, and he couldn't be at the Ronald McDonald House because of the families and children with sensitive immune systems.  These types of restrictions are unfortunately going to be a part of everyday life for Carter and his entire family.

Carter continues to have his ups and downs but is improving everyday.  Just the other day he went for a walk around the ward!  He continues to get more and more active and is returning to his smiling happy self.

Meanwhile, Teresa and Erick are being tested to learn all of the medications that Carter will have to take on a daily basis.  As part of the anti-rejection routine, Carter will have to be regularly medicated throughout his lifetime.  For now we all continue to be thankful for the daily blessings and pray for his continued improvement.

Friday, February 17, 2012

Carter on the Move

It has been a little over a week since Carter's surgery.  Everyday brings new blessings.  Last week we were overjoyed at the pink color in Carter's skin indicating a healthy blood and oxygen flow throughout his entire little body.  This week we get to celebrate the fact that Carter is unplugged and unrestricted from connections and tubes providing him with constant medication and/or feeding the doctors and nurses with stats and vitals 24x7.  Of course, on occasion they still need to utilize his PICC line to administer medication when needed, and check his vitals regularly, but he isn't constrained to the bed anymore.  That freedom coupled with his increase in energy and strength meant that just yesterday Teresa and Erick were able to take Carter on a walk around the hospital unit!  Watch out, Carter is mobile!  Everyday he is growing stronger and is recovering steadily.  He is still in the ICU but there is increasing hope that he won't be there much longer.  Along with daily progress there are also minor areas of concern, but those are to be expected.  The goal is to slowly reduce those areas of concern and continue to allow him to grow back to full strength.  By the time he leaves the hospital he should be stronger than he has ever been. 

Thank you as always for your continued support and prayers.  And on a final note, I personally pray that Teresa and Erick soon realize how mobile Carter is and that he starts getting into everything and being as rambunctious a toddler as he can be. I hope his parents get to realize him in the "Terrible Twos"... getting into everything and running all over the house with endless energy!

Saturday, February 11, 2012

Carter Looks Great in Pink!

So much has happened in a month!!!  Of course the pinnacle of Carter's journey was last week when he received his new heart.  If you have been following along you know by now that he received a new heart last week and went into transplant surgery that same night.  For the past few days he has been in the Intensive Care Unit recovering with his family.  He has been pretty heavily sedated and has been groggy and kinda slow to wake up.  But I am very happy to let you all know that starting yesterday he has been waking up and today he is awake and Teresa and Erick are able to hold him!  He is eating and drinking on his own and doing great.  Hopefully he will be out of the ICU in a day or so.  For now they are trying to keep him relaxed and quietly recovering without too much stress.  Some family and friends have been able to come and see him and as always Teresa and Erick are so thankful for the support!

The most exciting thing for Teresa and Erick is to see their little boy without the previously ever present blueish tint to his skin.  Before the transplant Carter was always struggling to get enough oxygen to his body which left him always looking a little cold.  He always had a slight blueish color to his skin, especially in his extremities such as his toes and nail beds.  But now, they have a PINK, warm baby boy.  Here is a picture of this little miracle of life!

These are the types of moments that need to be celebrated!

Thank you everyone for his birthday wishes and your continuing prayers and support.  I will continue to keep you updated as Carter recovers.

Thursday, February 9, 2012

Birthday Wishes

Today is Carter's Birthday!  He has so much to celebrate today and all of his days to come.  Here are some wishes that have come in for Carter from friends and family.

To my Grandson Carter on his 2nd Birthday. You have received the best birthday present anyone could ever give you. All of us are so happy for you and love you so very much. I cannot wait to hold you in my arms again and read our book together. Love you so much little guy! - Grandma Robyn

Happy Birthday.  We love you and can't wait for you to come home. - Love Aunt Kim, Alexis, Jadyn, Ilijah, and Felix

Our Dear Grandson Carter, Happy Birthday!  We love you and will see you this afternoon!!! - Love Grandpa and Gramma Lori!!!

Happy 2nd Birthday to baby Carter, you are an inspiration too all of us.  God and his healing angels have blessed you with the gift of life, and we are grateful beyond words for that.  Faith can move mountains, thank you God for this miracle.  Can't wait to meet you one day little guy! - Your cousins Shae, Brenda, Andre, Eric and Nicky

HAPPY HAPPY BIRTHDAY!! You are the strongest, bravest boy I have ever met!  Have a wonderful amazing day! - Love Aunt Sam

Happy Birthday Carter! You are an amazing boy. Your courage and strength has inspired me beyond words. You are a miracle that will forever touch my heart! Sending my love and prayers to you on this wonderful day :) - Dan

Happy Birthday Carter - you are the most beautiful courageous and strongest 2-year-old.... You are a blessing to this world... I Love You Carter... again Happy Birthday and "MANY MANY MORE" !!! - Love your Aunt Tammy Laizure

Happy 2nd Birthday to the most brave little boy I know! I love you Carter and I hope you're home soon celebrating with your whole family!!! - Tasha, Cory, Garrett, and Chandler

Happy Birthday Carter!!! - Love Uncle Tod and Aunt Em

Happy Birthday buddy!!  We love you so much.  You are such a wonderful part of our lives and we are so happy God gave us the privilege to be a part of your family. You are so special and we can't wait to share many more birthdays with you. - Love you always, Uncle Seth, Aunt Tana, Logan, Jackie, and Willis

Happy Birthday Carter with many more to come! - Love Uncle Brian

... and MANY MORE!!!! From the bottom of my heart, Happy Birthday. - Love Aunt Melany

Wishing you, Carter, a very Happy Birthday. My prayers for you and your family always. I love you very much! - Aunt Julie

Sweet Carter, you are such a wonderful blessing.  Even before you were born you had my heart.  I am so thankful that you are in my life.  Thanks to you I have a renewed and stronger faith in God, greater than I ever had.  I don't think I could ever put into words how special you are.  You are a miracle, a very beautiful miracle.  You are the greatest blessing.  God must have an amazing plan for you!!! I love you so very much.  I miss you terribly.  I pray for you always and I'm so excited and filled with unspeakable joy that you were given a new life.  You are truly an inspiration!!!! Happy 2nd Birthday sweet boy! - Aunt Elisa

Happy Birthday Carter! Your a little beauty mate. A true champion! - Love always, Jason, Alison, Imogin, Judah and Shylah

Happy Birthday Carter!! I love you so much.  I miss you too much.  I've been wanting to see you forever since the day I left Washington.  I can't believe my baby cousin is turning 2 years old!!! I remember being with you when you were barely 5 months old just a baby :) Happy Birthday love.  Just remember I will always love you :). - Love Samantha Salazar

Dearest Carter, Happy Birthday to you little precious one.  You do not know me but I am your mommy's cousin Devin.  Although we have never met I want you to know you have been in my thoughts and prayers for the past two years.  I am just tickled pink that you have been given the gift of life.  I am sorry you had to go through everything you did... you are a strong little buddy and I can't wait to someday meet you!! To a new life!! - Love your 2nd cousins, Tim, Devin, Tristin and Trevor. xoxo.

Happy 2nd Birthday Carter, having family around the world means you get to celebrate your birthday a little early :) Carter you are such an amazing young man you have touched so many people all over the globe!  Your strength courage and fighting spirit blow me away! your cheeky dimpled grin is so adorable I love you xoxoxox.  We all wish you the happiest of Happy Birthdays.  Happy Birthday to you Happy Birthday to you Happy Birthday dear Carter Happy Birthday to you hip hip hooray hip hip hooray hooray!!! - Trish

Happy birthday wishes for the toughest, bravest, most loved and blessed little man I know. When you grow up you get to tell people that when you were 2 you got a new heart for your birthday. God bless you Carter. Your cousin Lisa loves you bunches. - Lisa Marie

Happy 2nd Birthday Carter, you are such a strong boy and we love you so much! - Love Abbie,Sarah,Jack and kids;)

Happy Birthday Carter! You are the strongest little man ever!!! I love you! - Sarah Hasch

HAPPY BIRTHDAY CARTER. You are the strongest little man... Many many wishes and hugs and kisses!! - Stephanie Mabrey

Happy Bday to a precious angel!! Sincerely with love. - Kindra and Family

Happy Birthday Carter.  So happy to hear about your new heart and wish you you many more birthdays :) - Don Dewey

Happy Birthday Carter!!! UR a blessing to the world. - Dustin Lees

Little Carter, you have no idea the affect you have had on people.  Even people that have never met you.  You must have an amazing purpose in life! You are a miracle that gives hope and builds faith in everyone around you.  Happy Birthday to an angel here on earth! - Angela DeArte

Special Happy Birthday wishes to Carter. - Raymie and her mom Karen

Happy Birthday Carter and many many more.  We love you. - Mark and Jolyn Credell

Happy Birthday!!!!!! Carter hoping you having an amazing day! - Randy Mason

Happy 2nd Birthday!  Hope your day is AMAZING!!  Praying for you every day! - Love, The Hane Family!

Happy Birthday Carter!!!! I want you to know that we love you and are so proud of you. You have been such a trooper thru out your whole process. I can't wait to watch you grow, run, and love life. Happy Birthday buddy enjoy your day and give mommy a big hug. - Kristen Croy

Happy Birthday Carter! You are a very special little boy and I keep you in my prayers daily. - Teresa Finkenkeller

Special Birthday Wishes to Carter. Happy Birthday to you with all our love. - Karen and Raymie

Happy, Happy Birthday Carter...Wishing you a wonderful day and a wonderful life little man..God has bless you with the greatest gift ever, enjoy your new beginning...Love and Prayer's coming your way always. - Roberta Simon

Happy Birthday Carter!! I have never met you but you hold a special place in my heart and it makes me so incredibly happy that you got your miracle!!!! Here's to many, many more Happy Birthdays!!! - Amber McClure

Happy Birthday Carter! Although I have never met you, just by hearing the wonderful stories and the events you have been through I can tell you are a strong and precious little boy who holds a special place in many hearts including mine. I'm so happy God blessed you and your family with the greatest birthday gift of all, a new beginning! I hope you have a spectacular birthday and many more to come! - Adrena Byers

Happy Birthday to the strongest little guys in this world. Happy birthday Carter. - From the Long family! Amber Stone

Happy Birthday, Carter!!! - Lydia Keeler

Happy Birthday Carter!!!!!! Now your heart can keep up with your spirit!!!! Still praying for you!!! - Lynette Gallagher

Happy Birthday, Carter! Much love. - Kotschwar's


Happy Birthday Carter.  May all your dreams and wishes come true.  You will forever be in my prayers and in my heart.  Many, many heartfelt birthday wishes to you.  With many more to come.  - Connie, Chano and Julian

Happy Birthday Carter. We may not have met but thanks to your awesome Aunt I have came to know you and became one of your biggest fans. Your enduring strength inspires me. - Jamie and Erick

Happy 2nd Birthday Carter!! Your an amazing little boy, hope your birthday is filled with love, laughter and celebration! Wishing you a year of healing and happiness. - The Swinney Lyme Kingdom :)

Happy Birthday baby. - Kareena

Happy Birthday lil Carter! U are truly blessed! Have  a great Birthday! - Isidro Ramirez and Family

Tuesday, February 7, 2012

A Sigh of Relief

It is done.  Carter is out of surgery and his heart is beating at 100% for the first time in his life.  He is in recovery and with family now.  Thank you all again for all of your support and prayers.

Here is to a quick recovery!!!

Monday, February 6, 2012

A Moment to Reflect

Tonight amid the news of the amazing blessing of a donor heart for Carter there is so much emotion.  The full spectrum of emotions are present: first, sheer excitement at the opportunity of a healthy life for this beautiful boy; secondly, concern for Carter going through this invasive transplant surgery; and finally, deep sadness and eternal gratitude for the family that just lost their angel yet made the honorable choice to give the gift of life to Carter.

This weekend Carter was in the Intensive Care Unit while his medication levels were adjusted.  Sometime Friday night or early Saturday morning, Carter decided to pull out his own PICC line and it had to be replaced early this morning.  Carter has been sedated for most of today and was weakened by the procedure to replace the PICC line.  Over the past few days his heart failure has been increasing and has been in obvious discomfort.  The timing of this donor heart couldn't be better.  Over the past few weeks he has been getting weaker so there is some concern over this upcoming surgery.  While we are all so very thankful for the gift of this healthy new heart we ask that you please understand that your prayers and support are still needed through this surgery tonight and as he recovers in the next days and months.

Teresa and Erick and our entire family are immensely, deeply blessed by the gift  that a family has given to Carter.  Since we learned that Carter needed a heart transplant it has been very difficult for all of us to comprehend and come to peace with the fact that while we prayed for a heart for Carter that we knew that there would have to be the loss of another life.  We mourn for the loss of the angel that is blessing Carter tonight and pray for the family as they go through this difficult time.

We also are thankful and pray for the skills of the surgeons, nurses, and all of the hospital staff that will take Carter into their care.  We pray that they care for him as if he were their own and that the Lord watch over them.

Your outpouring of support is amazing and gives us all strength.  At this time we ask that in lieu of flowers or gifts, that if you are moved to do so that you please send any gifts to one of the recommended charities listed along the right hand side of this blog.  Carter cannot have flowers in his room, and there is very little space for toys.  Thank you so much for all of  your love!

In all of this emotional turmoil, I turned (like a good Episcopalian) to the book of Common Prayer.  I found these prayers to be comforting and I hope that they offer you the same.

For those we Love
Almighty God, we entrust all who are dear to us to thy never-failing care and love, for this life and the life to come, knowing that thou art doing for them better things than we can desire or pray for; through Jesus Christ our Lord. Amen.
For the Care of Children
Almighty God, heavenly Father, you have blessed us with the joy and care of children: Give us calm strength and patient wisdom as we bring them up, that we may teach them to love whatever is just and true and good, following the example of our Savior Jesus Christ. Amen.

As more news is available I will be sure to keep you all updated.

Thank you all for your prayers and support. 

A Blessing Received

Tonight at 8pm Pacific Time, our prayers were heard.  It has been confirmed, a donor heart has been found for Carter!  Thank you for your prayers and support.  While this is an amazing gift, we still ask for your prayers because as soon as tonight Carter will be going into heart transplant surgery.  We will share more information as soon as it is available.

We also ask that you send prayers to the family that was so kind as to give this blessing.

Thank you and God Bless!

Friday, February 3, 2012

Heart Awareness Day

Today is National Heart Awareness Day.  Teresa and Erick have received pictures of family and friends from all over wearing red to support Carter and his cousin Ilijah who were both born with a Congenital Heart Disease.  They have received pictures of Carter's newest cousin Willis in Red and even Steph and Josh from Australia are wearing red today!  Thank you everyone for your continued support.

As far as little man, Carter, his BNP levels continue to be very high despite the round of diuretics to reduce the amount of fluid on his heart.  The doctors and nurses have all been working very hard to keep his levels within reasonable thresholds but today they came to the decision that they have to increase the level of Milrinone that he has been receiving.  Milrinone is a medication that strengthens the contractions of the heart and reduces the resistance against which the heart pumps.  It increases the amount of blood pumped out of the heart with each contraction.  (Thank you Dr. Steve for the description.)  While they are increasing the medication Carter has to be admitted to the Intensive Care Unit.  We hope that he is only in the ICU while they are administering and managing the increased levels of Milrinone and that he will be back in the regular pediatric ward in a day or so.

Carter continues to be in good spirits and has been enjoying the visit from his Grandma Robyn.

For the remainder of today please spread awareness for heart disease and pray that Carter is out of the ICU as soon as possible.

Wednesday, February 1, 2012

Week 3 Update

I can't believe that it has been three weeks that Carter has been in the hospital.  I am sure that it seems much longer than that for Teresa, Erick and of course Carter.  

Carter is doing as well as can be expected.  He is stable and is still a very happy little boy.  He still needs constant medication to control his vital organs.  His liver continues to be enlarged, and his BNP levels are higher than the doctors would like.  BNP levels indicate the level of heart failure, suffice to say, Carter's levels are really high.  For the most part they are managed through medication, but recently they have started to climb.  This has the doctors a bit concerned and they continue to monitor these levels and are working diligently to get the right mixture of medication to care for these factors.

Teresa and Erick try to keep him active by taking Carter for walks around the hospital halls.  He gets winded pretty easily because of the physical exertion but they need to keep him moving around as much as possible.

Carter has enjoyed quite a few visitors including is Grandma Monica who came over from Eastern Washington, his Aunt Kim and cousin Ilijah, and many others who have stopped by to wish him well, and cheer him up.  Carter loves to laugh and play and loves time with his friends and family.  Thank you to everyone who has been able to stop by the hospital.  It is a blessing to Carter and Erick and Teresa!

The family as a whole is getting used to this new "normal" and settling in to somewhat of a routine.  It is clear that they may be in this situation for a long time so they are trying very hard to make sure that they are able to give Carter all of the attention and care that he needs while ensuring that Madison and Clinton are well cared for and get special Mommy and Daddy time.  This past weekend they were able to go to the Seattle zoo with Erick and his mom, Monica.  I have also heard a rumor that Daddy Erick has a special date to the Daddy-Daughter dance coming up at Madison's school.

Thank you as always for your continued support and prayers for Carter and his entire family.  Their strength is enhanced by the love and support of this very large network of friends and family.

God Bless.

Tuesday, January 24, 2012

2nd Week Update

It has now been two weeks since Carter was admitted to Seattle Children's Hospital. We have a good news update from the most current post, Carter is eating on his own and all foods and liquids are staying down! That is a major improvement over where he was just a few days ago. This means no yucky feeding tube for now and a decrease in the need to be admitted to the Intensive Care Unit. This means that Carter's days are as "normal" as possible, he can play, have visitors, and go on walks when he feels up to it. He is doing as well as can be expected and is in relatively high spirits. He has gotten some visitors in the hospital and that really boosts his spirits. Even family that can't physically come in to see him have been able to video chat with him. Carter LOVES to hold Teresa's phone and see who is talking to him. I personally made the mistake of showing him a Hershey's Bar and a Coke while we chatted last night. That apparenly upset him because he wanted some. Sorry Teresa and Erick! As always, your thoughts, prayers and support are greatly appreciated. God Bless.

Saturday, January 21, 2012

Ups and Downs

The last couple of days have certainly had their ups and downs for Carter.  His mommy and daddy are both reporting that Carter isn't eating but that his belly is bloated and he keeps throwing up.  The nurses and doctors are taking steps to determine if he is sick with a bug of some kind or if it is something else.  As of right now they are convinced that it isn't a bug but that perhaps he is "backed up".  Regardless of the cause, he is losing valuable weight and is currently being given fluids through an IV and if he doesn't start eating tomorrow they will most likely have to give him a feeding tube.  Because he hasn't been eating his kidney levels have increased and his BNP levels, the indicators of degree of heart failure, were up as well.  Since they put IV fluids in him those levels have decreased and are manageable again.  Teresa and Erick are certainly learning that each day will bring new frustrations but also need to remember that each smile is a blessing.  

Also of note, this week the Seattle area received "record setting" snow.  I use the " " because anyone reading this outside of the Seattle area will be surprised that the city can shut down with 1 foot of snow, but trust me it can, and did.  This is frustrating for anyone, but it had unique frustrations for Teresa, Erick, and other family members.  First, gotta give a big shout out and awesome award to my sister Kimberly, who is helping Teresa and Erick out by taking Madison and Clinton during the school week so they can keep as normal a routine as possible.  This on top of caring for the four children of her own.  Well, with the snow, this week there was no school which meant that Kimberly had six lil' childrens runnin' round the house causin' a good ole ruckus.  Thankfully, the roads are finally all cleared and Teresa was able to make it home to Mount Vernon, and was able to pick up Madison and Clinton to spend the weekend with them in Seattle to visit Carter.  The doctors have told Teresa that they joy that Carter experiences when Clinton and Madison around is off the charts and truly does help with his health.

Here is wishing all of you happiness, health, and more ups than downs.

Tuesday, January 17, 2012

Laughter is the Best Medicine

For all of our friends and family that are spread all over this world, who wish that they could see Carter and give him a hug, do anything to bring him a smile, here is a video that will warm your heart.

Monday, January 16, 2012

First Week

So, It has been about a week since Carter was admitted to Seattle Children's to wait for his donor heart.  This week a lot has happened.  Teresa and Erick have been great about trying to keep everyone informed as to Carter's condition, but it can be hard to keep everyone up to date.  This week Carter was moved from the Intensive Care Unit to the regular hospital floor after he received his PICC line.  The PICC line is essential in his care because it provides a more direct flow of medications to his heart as opposed to a standard IV.  As can be expected he is being constantly monitored by the great Doctors and Nurses at Children's and his medication has changed a bit throughout the week to address different needs.  Currently I believe he is on 4 different types of medication to manage his heart rate and blood pressure as well as to manage his iron. 

Teresa and Erick were able to bring down Madison and Clinton for the weekend to visit their brother.  That was a huge morale boost for the whole family.  Teresa and Erick have also been allowed a room at the Ronald McDonald house.  This wonderful organization provides lodging for families who have to be with their child while receiving long term medical care.  Apparently, they have a nice sized room that will accommodate them as well as Madison and Clinton when they are able to be with them in Seattle.  They also have a kitchen and a refrigerator which helps to keep mommy and daddy fed on more than cheap hospital coffee and food from the vending machines.  Carter's condition is one that truly impacts the whole family!

I think that this week has been about settling in, getting used to being in the hospital for Teresa, Erick, Carter and getting Madison and Clinton on a routine.  So many people are helping out and Teresa and Erick are very thankful for everything! 

Your kind thoughts and prayers are always welcome.

Thursday, January 12, 2012

Carter's Story

On February 9th 2010, Erick and I were blessed with our third child.  To continue what was an inadvertent trend, we named him a presidential name, Carter.  Our other two children are named Madison and Clinton, while we didn’t realize the presidential connection initially, by the time we were pregnant with Carter it became apparent and we decided to continue with the theme.  We were so happy to meet Carter and just as anxious as we were with Madison, our oldest, to take him home and introduce him to the rest of the family.  He was such a good boy.  He wasn’t very fussy, and slept a lot, but he also wasn’t eating.  After a few days my mother’s intuition started to wonder if he was too quiet, and if he slept too much.  His coloration also seemed to be a bit off.  So, we decided to take him to the hospital on the 12th of February.  I was convinced that I was just overreacting, but I wanted confirmation and assurance.  Never would I have imagined that after getting checked in and going through the normal hospital protocol and paperwork drills the urgency that all of the hospital personnel were working with Carter.  I was even more surprised to find that that he had to be immediately air lifted from our hometown of Mt. Vernon, Washington to Seattle Children’s Hospital, 60 miles away.  That did NOT give me confidence or the reassurance that I was seeking.
Erick and I were not able to fly with Carter on the helicopter to Seattle Children’s Hospital, so we had to make what seemed like the longest drive of our lives to Seattle to meet him there.  Once we arrived at the hospital we were briefed by the medical staff as to Carter’s condition.  It was then that we learned that he was born with a severely underdeveloped left ventricle in his heart, a condition known as Hypoplastic Left Heart Syndrome and Critical Aortic Stenosis.  The left ventricle is responsible for delivering oxygenated blood from the heart to the rest of the body.  Because Carter’s left ventricle and artery were so under developed he was receiving only 20% of the oxygen that his body needed.  He was admitted the the Neonatal Intensive Care Unit (NICU) of Seattle Children’s Hospital. 
At this point we were given our limited treatment options for our newborn baby.  The first was what is often referred to as “Compassionate Care”, basically we were offered the option to take Carter home, make him comfortable, and give him all the love that we could for the short number of days that he would be expected to live.  The only other option that we had was to undergo a three phased series of surgical procedures that wouldn’t repair his under developed heart, but would help to redirect the blood circulation. 
On the 23rd of February, when Carter was only 3 weeks old, he underwent his first open heart surgery.  He went through a procedure known as the Norwood procedure.  This life saving procedure allowed us to eventually take Carter home with us.  We knew he was very weak and that the Norwood procedure did not solve the problem entirely.  Over the next few months we made many trips back and forth to the hospital for check ups, and for other “minor” surgical procedures.  On the 26th of July 2010 Carter was healthy enough to go through the second phase of the surgical process, the Glenn procedure.  This was his second open heart surgery.  As you can imagine we were extremely nervous for Carter to undergo such an extreme procedure for the second time in his very short life.  Thankfully, he came out of the surgery as well as could be expected.  Over the next few days and months it became apparent that while the surgery was successful, there were remaining complications, and that Carter was not responding to the surgery as he should be.  We went through more “minor” procedures and many, many trips to the hospital.
Over these next months though, we got to really know Carter.  He has blessed our home and family in so many ways.  He has done things that doctors told us would not be possible.  Had his first birthday, took his first steps, and though his speech is slow to develop, he is communicating as well.  His favorite words are “No!”, just like any toddler, and “Ouch!”, which always breaks my heart.  He has a wonderful smile and loves to play with his big sister and brother and his many cousins.  He has a special connection with his cousin Ilijah, who was born just a few days after Carter, who also has a congenital heart defect and has since had a pace maker installed.  Ilijah and Carter love to play in Ilijah’s new ball tent.  Carter loves books and coloring and he loves to wrestle with his big brother Clinton.  While the rambunctious play makes Erick and me nervous, we love to see him live each day to the fullest and have fun with his family.  We are also very thankful that Clinton and Madison have not yet taught their baby brother to jump off of their beds.
We have adapted to “normal” life for our family.  This means: knowing infant CPR; introducing all of the emergency technicians in our small town to Carter so they can know the details of his care if called in an emergency; having Seattle Children’s Hospital on speed dial; and knowing how to administer feeding and breathing tubes if needed.  We have lived this “normal” life since the Glenn procedure while we waited to see if Carter would be a good candidate for the final surgical procedure, the Fontan.  This procedure is usually done when the patient is approximately 30 pounds.  However, right around Carter’s first birthday there were some complications and between February 2011 and March 2011 it became apparent that he would not be a good candidate for the Fontan procedure and that the only other course of action would be a heart transplant.
By June 2011 Carter was on the list to receive a heart transplant.  Since that time we have come to realize that the only thing that would make him truly healthy was a new heart.  We continued our routine of multiple hospital visits and checkups and so forth to ensure that he stayed as healthy as he could be but we were also advised that he would get sicker and sicker and that a time would come when he would have to be admitted to Seattle Children’s Hospital for constant medical attention while he waited for his heart.  Even though we were told that this day would come, and we have been preparing for it we were still shocked and saddened when that day came, January 10th 2012.  Just one month shy of his second birthday, Carter was admitted into the Intensive Care Unit of Seattle Children’s Hospital where he will remain until a suitable donor heart is found.  He has been moved to the highest priority on the transplant list, 1A. 
Erick and I have worked out a plan to ensure that Madison and Clinton get to keep going to school and maintain their normal day to day routine with the help of our family and friends.  We know that they are going through so much too.  We continue to be amazed at the strength of all of our children.  Erick and I have developed a schedule to ensure that one of us is always by Carter’s side.   But it is very clear that what was “normal” is going to change drastically!
All we can do at this point is pray that Carter receives a heart as soon as possible.  But even once he receives his new transplanted heart, he will have months’ worth of recovery time.  We know that we have a long road ahead of us and we thank you all so very much for your thoughts, prayers and wishes.  The outpouring of support from our family, and friends has been overwhelming.  We are truly humbled by the love you have shown for Carter and our family as a whole.  All that we can ask is for your continuing support and prayers.  However, if you are so inclined below is a list of charitable organizations where you can provide donations that support our family directly and indirectly.
God Bless,
Teresa, Erick, Madison, Clinton, and Carter

The Carter Care Fund
c/o St. Paul's Episcopal Church
415 S. 18th Street
Mount Vernon, WA 98274
Rev. Vicki Wesen

St. Timothy’s Episcopal Church
Memo: Carter Tillman Fund or Vicar’s Discretionary Fund
410 Jackson Street
Gridley, CA 95948
Rev. John Harris
Seattle Children’s Hospital

Ronald McDonald House Charities Western Washington and Alaska