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.

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.

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.

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.

Carter's Story

On February 9^th 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 12^th 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 23^rd 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 26^th 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 10^th 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 98274Rev. Vicki Wesen 360-661-1553

St. Timothy’s Episcopal Church Memo: Carter Tillman Fund or Vicar’s Discretionary Fund 410 Jackson Street Gridley, CA 95948 Rev. John Harris 530-846-4147

Seattle Children’s Hospital www.seattle childrens.org

Ronald McDonald House Charities Western Washington and Alaska www.rmhcseattle.org