Hope and Children

It has been over a year since we said goodbye to our son. Many things have happened in the course of a year; life has not slowed down. We have experienced ups and downs. One thing has remained the same since our journey with Jordan: an appreciation for the blessing of each day. Losing a son gave us a profound understanding that our lives are not permanent. We believe that we have everlasting life through Christ Jesus, but "our" lives on Earth are not permanent.  That shouldn't come as a suprise, but we tend to live and act as if we can live forever by our own strength and protection. 

Someone asked us a profound question yesterday that many may be afraid to ask. "How do you take joy or look forward to having children in circumstances that are not ideal for having children?" An extreme example of this was a Jew raising a child in a Jewish concentration camp. In our experience, it was going through with a pregnancy with little chances of survival. We were fortunate enough to face the reality of that question and come out on the other side of the experience stronger in our faith. Why is that? Hope. We had the blessing of understanding God's nature and taking hope in Him. Take the following quote as an example.

Then they brought little children to Him, that He might touch them; but the disciples rebuked those who brought them. But when Jesus saw it, He was greatly displeased and said to them, “Let the little children come to Me, and do not forbid them; for of such is the kingdom of God. Assuredly, I say to you, whoever does not receive the kingdom of God as a little child will by no means enter it.” And He took them up in His arms, laid His hands on them, and blessed them. (Mark 10:13-16 NKJV)

Jesus did only what He saw His Father in Heaven do. He did not turn away the children. In fact, He rebuked anyone who would do such a thing. Life is not permanent. Where are we to store our treasures? Our family chooses to store our treasure in the Kingdom of Heaven. We do that by building our relationship with the Heavenly Father and investing in other people; especially in the lives of children.

Something very basic, but very beautiful happened in the little time that we had with Jordan. A mother and a father received their son with excitement, hope and love. We held his hand. We kissed him. We prayed with him and dedicated him to the Lord. Believe us. God was with us and although we may not entirely realize how now, those things were building up treasures in the Kingdom of Heaven. As for the actions of our son Jordan, an infant, he gave us far more hope for the future than we could ever have given him.

We are so excited to share two pieces of very exciting news. The first is about Ian's parents. Ian was the little boy who passed away the day before baby Jordan. His parents have had an extremely rough road trying to bring healthy children into this world. Not yesterday morning when they welcomed a little boy, Christopher, into their family. We are so excited for their family and thank God for Christopher. Congratulations to them! Also, we are expecting to welcome a little girl into our family in March! After three sonograms, everything looks very good. We couldn't believe it when they told us it was a girl. We eagerly await her arrival and thank God for His many blessings.

Happy Easter & Jordan's Autopsy Results

Like the final chapter of an amazing story, we had the opportunity to discuss Jordan's autopsy results with a neonatologist from CHOP today. We had looked forward to hearing the results because we wanted to know the full story - what was going on inside Jordan's body that prevented him from surviving? In the back of our minds, there was a fear that maybe the results would point to a mistake or lead to more "what if" scenarios. Ultimately, we knew we had to press through those fears because we wanted to know the truth.

The peace that has held us through this entire journey was with us again today. Thankfully, Jordan's autopsy only confirmed what we already knew: Jordan was very, very sick. The size of his hernia was quite large, which allowed so much "stuff" up into his thorax. The severity of his condition was significant. The pulmonary vessels were maligned - not able to grow and develop as they were intended to - making the pulmonary vessels thick. They compared the alveoli to a tree that had been pruned. Without the alveoli being properly developed, the gas exchange becomes quite difficult. On top of this, Jordan was still suffering from pulmonary edema. The normal lung mass of a child his size is around 60grams. Jordan's was 120grams at death. That's significant when taking into account that his left lung was so small. Clearly, the anatomy of his lungs left him very sick.

Jordan's heart also began failing. It was working extra hard to push blood downstream into the lungs. The normal weight of the heart is 25grams and his was 35. The right ventricle in particular was inflamed. They are unable to see organ tissue on an X-ray and were unable to see just how sick he was.

The doctor confirmed that Jordan's autopsy matched how he acted during his final days. She also mentioned that they wouldn't have changed anything given their current procedure and technology. We tried everything we could to give Jordan a fighting chance. The amazing thing is that he took that opportunity and ran with it. They again mentioned how tough Jordan was to fight through everything he faced. He was much sicker than he let on. He never gave up and always fought for life.

This Easter weekend took on even more significance now that we have experienced the death of our son. If it hadn't been for our undeterred faith in what the Son of God accomplished in His death and resurrection, we would have been lost in a sea of chaos. Our appreciation of what our Father God and His Son accomplished in preparing everlasting life has grown leaps and bounds. During our phone conversation today, CHOP commented on how well we have rebounded in this time of loss and have already begun to use this experience in a positive way. The truth is, we simply loved our son and we knew what the Son of God did for us on the cross. We always had faith that Jordan would have a home in Heaven, even if he didn't make it here on Earth. We fought as hard as we could to give him an opportunity to live a life here. But, we always knew that no matter what the outcome, he would have a home.

The price that our Savior paid paved the way for us to have hope. Hope that no matter what happens in this lifetime, you can't take away eternity with our Father in Heaven. Our faith in what was accomplished on the cross seals our fate. Thank You God for everlasting life. Thank You for forgiveness. Although sometimes we are stripped bare and feel like we have nothing left to hang on to, we always have Christ...

Happy Easter everyone!

Baby Jordan was in the Hays Daily News

From the Hays Daily News
3/25/2012

Tragedy leads parents to lend help to others

By KLINT SPILLER
kspiller@dailynews.net

Michael and Brandi LaFond experienced tragedy last fall when their infant son, Jordan, died.

But they didn't let it drag them down.

Instead, the LaFonds said the incident strengthened their family and faith. They found hope and a way to find a silver lining to the situation. Because of that, the LaFonds are partnering with the American Red Cross to have a blood drive in memory of Jordan from Tuesday through Friday at the Red Cross blood donor center, 208 E. Eighth.

"You think everything has to work out to have hope in something," Michael said. "We really learned by going through this that's not the case."

Michael & Brandi LaFond. Picture taken by Raymond Hillegas ~ Hays Daily News.

Jordan was diagnosed with a birth defect known as congenital diaphragmatic hernia on June 1 while they were getting a routine sonogram. CDH is a rare condition where a baby is born without a diaphragm, causing the rest of the organs to push against the heart and lungs, which can lead to a child's death.

Brandi was 20 weeks pregnant at the time, and they were expecting to see the baby for the first time and learn the sex of their child. They weren't expecting that news.

"We were shocked," Michael said.

At first, they thought it might have been a mistake, but after getting a second opinion, they knew it was true. They immediately got to work, researching the condition and finding hospitals that are the best at treating the condition. Though they considered a hospital in Kansas City because it was starting up a CDH unit, they instead chose Children's Hospital of Philadelphia, because of its doctors' extensive experience with the ailment.

"We tried everything we could to give him the best shot we could," Michael said.

They lived in Philadelphia with a host family from Aug. 18 until Oct. 18, when Jordan was delivered, and from Oct. 20 until late November at the Philadelphia Ronald McDonald House. Though it didn't work out, Brandi said she appreciated the extensive help everyone provided while they were there.

"Our host family was very giving," Brandi said. "When my parents came up to visit us, they lent them their own car and allowed them to stay there, too."

After Jordan's birth, he was moved from a ventilator to an oscillator and then to a machine that works for the heart and lungs.

"It was so hard to see my baby hooked up to all of those machines," Brandi said.

Because of his lack of a diaphragm, Jordan's liver grew and pushed on his heart and lungs.

"Infants (with CDH) who don't have their liver up have a 90-percent chance of survival," Brandi said. "With the liver being up, it pushes it way below 50 percent."

To correct this, surgeons put an artificial diaphragm from rib to rib and moved the organs back to their proper places. Michael said the experience was draining.

"I've never been involved in anything my whole life where in one day, you can go from extreme everything is falling apart to everything is OK," he said.

However, the damage to the heart was too much, and he died of pulmonary hypertension.

"(With pulmonary hypertension) the blood pressure in the pulmonary vessels is really high," Brandi said. "It puts pressure on them, so the right side of the heart works harder. Eventually, the right side of the heart gives out, because it is working too hard to pump the blood through the pulmonary vessels."

Jordan died Nov. 21 at 34 days old.

"The amazing staff at CHOP gave Jordan a chance at life, and it gave my 3-year-old son Caleb a chance to say 'goodbye,' " Brandi said. "We are thankful for everyone who tried to help Jordan survive."


Helping Red Cross

During his short life, Jordan needed 5,440 milliliters of packed red cells, 829 milliliters of platelets and 1,840 milliliters of frozen plasma. Brandi said it made her learn firsthand the importance of the American Red Cross.

"With Jordan being on ECMO and getting multiple blood transfusions, we just realized how important giving blood is," she said.

Because of that, Brandi reached out to the American Red Cross in Hays about having a memorial blood drive for Jordan. They made it so it would coincide with CDH Awareness Day on Saturday. Catherine Younger, an American Red Cross donor recruitment representative, said her organization was happy to work with the LaFonds on the event.

"Any time you can put a face with the need, it kind of hits the heart a little bit," Younger said.

Donors can make an appointment by calling (800) RED-CROSS, but walk-ins also are welcome.

Blood Drive in Memory of Jordan

Passion is often ignited by an encounter or an experience with a personal, life altering event. We had never heard of CDH until June 1, 2011. Now, it has forever changed our lives. There is no known cause for it. There is no known cure for it. There is little research for it. There is little awareness about it. Yet, about 1 in every 2,500 infants are diagnosed with it. Of those diagnosed, 50% do not survive. Breath of Hope Inc., an organization created to bring more awareness to CDH, has proclaimed March 31st to be CDH Awareness Day.

In the spirit of bringing awareness to the community of Hays, yet realizing not everyone will have a passion for nor an encounter with CDH in their lifetime, we have decided to host a Center Blood Drive in memory of Jordan. Every two seconds, someone needs a blood transfusion - a victim of CDH or not. But, only a fraction of the population actually donates blood. Giving blood saves lives. One person donating blood can save up to three people. We never understood ourselves the importance of donating blood nor the significant role that the Red Cross plays in facilitating the provision of blood to those who need it until Jordan’s life hung in the balance. The twenty-six days that Jordan was on ECMO, he was given multiple blood transfusions daily. Without blood donors, our 34 days with him would have been drastically shorter. The need for blood is great; the children’s hospital where Jordan lived his 34 days ran out of blood and the Red Cross had to make a special delivery. Please join us in a blood drive to help promote CDH awareness and to aid those in need of blood. For your convenience, appointments can be made in advance by calling (785) 625-2617.

If you don’t live in the Hays area, you can participate by visiting your local Red Cross and give blood in honor of CDH Awareness, Jordan, or a friend or family member who needed blood in the past or who will need it in the future. If you plan on giving blood and this is your first time to donate, please visit the following link concerning facts about blood donation, increasing your iron count when you donate blood and blood donation eligibility questions (click here to visit the Red Cross). If you have any more questions about donating blood after reading the information from their site, please call the Red Cross directly at 1-866-236-3276.

Below are some interesting facts from the American Red Cross:

• On any given day, 38,000 units of red blood cells are needed for hospital patients in the United States.
• One in every 10 people entering a hospital will need blood.
• Approximately 38% of the population is eligible to donate blood. Of those eligible to donate blood, only a small fraction have actually given blood.
• In the U.S., someone needs a blood transfusion about every two seconds.
• The average adult body contains 10-12 pints of blood. A newborn baby has about one cup of blood in his/her body.
• There are about one billion red blood cells in two or three drops of blood.
• Red blood cells must be transfused within 42 days.
• There is no substitute for human blood. It cannot be manufactured.
• Almost everyone will know someone who needs blood.
• Blood is often needed for traumas, heart surgeries, joint replacements, organ transplants, premature babies, leukemia and cancer treatments, and much more.
• People in car accidents who suffer massive blood loss may require transfusions of more than 50 pints of red blood cells.

If you would like to give monetary donations to the Red Cross or organizations that promote CDH, please visit the following websites:
-http://www.redcross.org
-http://www.cdhsupport.org/
-http://breathofhopeinc.com/
-http://globalcdh.org

Jordan's Legacy - In Memory of Jordan Joseph

This was the final blog post from our journey that we wrote specifically to be read at Jordan's memorial. We were honored to have Rev. Jerre Nolte from the First United Methodist Church in Hays read this as a special guest.  Now, we would like to share it with friends and family.

Jordan's Legacy
One tough nut - that does have a nice ring to it. Little did we know how popular that phrase would become over the course of a few weeks since its posting. Yes, Jordan's story became much more popular than we had ever anticipated. The website was created as a means of communication with family and friends and, ultimately, as a gift to give to Jordan when he was old enough to understand. We are fortunate to have so many caring friends and family. It was an honor to share our son's battle with them. It is a written account, meant to be a reminder of the unwonted circumstances Jordan would have to face as he fought for survival.

Jordan surprised us all though, didn't he? Even the medical professionals were caught off guard on many occasions. Jordan was big and strong. He never let on how sick he really was. At his core, Jordan had a pure and simple desire for breath, for life. No setback ever took that away from him. We never truly expected Jordan's life to end the way it did. We have asked ourselves, "Why is that?"

Through Jordan's tribulations and loss, we received a gift - a profound new understanding of hope. Hope can be many things to many people. But, Jordan taught us that a true sense of hope is not based emotions. No, emotions are not an anchor of the soul. Life gives us more drama than could ever be captured in writing. Jordan's life revealed that true hope can, in fact, guard our very thoughts.

"You will keep him in perfect peace,

Whose mind is stayed on You,

Because he trusts You."

~ Isaiah 26:3

Our hope for Jordan was based on trust in God. Trust that His word is true and accurate. Trust in the promises given to us. God never specifically told us that Jordan would necessarily survive. We do feel that we were promised a fighter though; and Jordan fulfilled every bit of that promise. We could not conjure up false hope for Jordan based on what we were seeing with our eyes or feeling within our hearts. Our peace came from the Lord and the natural love for Jordan that he stirred within our hearts. At the end of the day, we were Mommy and Daddy, and we loved our son. Our family fought through each day with peace and great expectation of the Lord.

Jordan never uttered a word, nor even a cry. Thirty-four days is but a blink of an eye in most lifetimes. Yet, he taught us more in those precious days of life than most can teach in a lifetime. The simple, yet powerful impact of love. The ability of a common hope to pull us together in difficult times. The mysterious and powerful healing nature inborn within the human body. The importance of prayer, fasting and worship.

Baby Jordan inspired so many, from so many different backgrounds with his story. Strange to be talking about a legacy as parents of an infant who only lived 34 days. But, those 34 days could fit more volumes than some lifetimes.

You will be greatly missed Jordan, and cherished forever. We will confidently await in hope on the day that we will be reunited with you. Big brother Caleb summed it up best when he asked us where baby Jordan is and it was explained to him that he went to see Jesus. With pure excitement that only a child can summon, he exclaimed, "That's awesome!"

In Memory of Jordan

Today marks two months since our baby boy passed away. In many ways, it feels like it has been much longer than that.  We can't express the impact Jordan's life had on each of us. The most important aspects in life are more basic than all of our complex plans - so simple, yet so hard to stay focused on with our busy lives.  Although we already had a great appreciation for Caleb, our firstborn, our appreciation for him has grown tremendously.  He provides us strength and a thankfulness for each day.

God has continued to provide for us through the generosity of others and by meeting other needs in tremendous ways.  Our local hospital even waived a payment that Daddy had been paying for his own health expenses.  Families provided meals several nights a week during our first month back home.  What a blessing it was to look forward to home cooked meals that we didn't have to prepare! People continue to amaze us with their love and support.

Jordan is brought up in conversation daily.  How much we miss him... How much it hurts that he's not here with us... How thankful we are for the 34 days we had the honor to spend with him.  Caleb talks about baby Jordan frequently. "Baby Jordan is in heaven with Jesus?" "Can we go see him? That would be amazing!" "Can we go to the hospital and play with the balls and see baby Jordan?" "Are you sad because you miss baby Jordan? Well, I'm sad too..."

It turned out to be quite the chore, but Brandi was able to donate all of her milk through CHOP.  It is nice to know that someone will be able to use it.  We know of at least one mom that we got to know at CHOP who got to bring her baby home this month.  We are so excited to hear a survival story about a baby overcoming severe CDH.

We love Jordan greatly and will always treasure the moments we had with him.  We will never forget him.  Others have told us that the pain lessens with time.  For now, we are just thankful that we have each other and are thankful for today.

Daddy made a video for Jordan's memorial service that we would like to share.  Although only a few family members could join us in Philadelphia on this journey, Jordan's life inspired so many people. Our hope is to share the precious few moments that we will cherish forever.

The Day Has Come - Jordan's Memorial

A wave of mixed emotions has engulfed us this morning. The day is here: Jordan's memorial and burial. It will bring closure for us to walk through this day. We are looking forward to the memorial tonight at 6pm out at Celebration. Northwestern Signs and Designs donated beautiful prints of photos of baby Jordan. The video that Daddy put together for Jordan turned out nice. Several friends, especially Jayna, helped create a beautiful display of items that have special meaning to us. It is amazing how everything we needed for the memorial has been provided one way or another. God's provision has been a theme to us throughout this journey. It has continued throughout planning Jordan's memorial.

We look forward to meeting all who can attend.

Celebrating Jordan's Life

Although not physically present, so many people knew about Jordan's battle for life. The memorial will hopefully be a beautiful memory of his life. We will have the opportunity to share Jordan's Legacy, a post intended for his site but we saved it for the memorial. There will also be a short video and Celebration Community Church was generous enough to accommodate us. Our hope is that everyone leaves having the opportunity to have been as close to him as possible. Jordan is greatly missed and was such a beautiful baby boy. We are proud that he is our son.

Planning for the Memorial

Plans are falling into place as we look forward to the memorial this Thursday at 6pm. Baby Jordan touched a lot of people and we want to make the memorial special. As hard as it's been, we find that it helps us emotionally to work through some of the material. It reminds us of Jordan and our journey together.

It is simply amazing that we were connected with the pastor that we had blogged about while in Philadelphia. He has been wonderful at helping us gather our thoughts and emotions during this difficult time to plan the memorial. It is a small world after all. So many people are either working hard to prepare or are offering assistance. It has been truly a blessing to see how many people are willing to help.

Memorial Services for Baby Jordan

Services will be held at 6:00 p.m. Thursday, December 1, 2011 at Celebration Community Church in Hays.

5790 230th Avenue
Hays‎ KS‎ 67601
United States

Hays Memorial Chapel Funeral Home is handling the arrangements. All who would like to attend are invited to mourn with us, as well as celebrate the life of baby Jordan.

Home At Last

Our arrival home wasn't dramatic. We rolled in under the guise of night. By three in the morning, traffic was sparse. It was strange to walk into our house after all this time. Our first comment to each other was that it looked better than we remember. Caleb barely slept at all on the way home because of his anticipation. His reaction upon seeing our home for the first time in months was priceless. He slowly took it all back in as he began remembering his own toys and bed. Every room was inspected and named before he could calm down to go to sleep.  "This is Caleb's room.  This is Mommy and Daddy's room.  Here's my toy box with all my toys."

Although hard to comprehend that Jordan cannot be with us, we are very glad to be home. Many thanks to everyone who helped purchase food and stock our refrigerator and pantry for our arrival. That was very thoughtful and helped more than you know.

Bad Dreams, Blessed Memories

As if this journey wasn't hard enough to endure by itself, dreams sneak up and make it all the more difficult. When Jordan was still in the hospital, Michael had a dream that Jordan was released, even though he still required the occasional hand-bagging. We all went out to enjoy a celebratory meal. Then, like a monster sneaking up in the night to say "gotcha", Jordan started gasping, begging for air. Michael desperatley tried to hand-bag Jordan back to life, but couldn't. It was too late.

Michael awoke, startled and heart racing. Seems like such a silly dream but, given the circumstances, it took a good ten minutes to calm down again. Dreams still plague Daddy - sending him back to the hospital to experience familiar sights and sounds from the last month. It happens when we're awake too. The sound of a restaurant's heater kicks on and sounds like the steady rhythm of the oscillator. Aromas remind us of the smell of Jordan's baby skin.

Other parents of babies with severe CDH at CHOP had similar experiences. It is such an overwhelming and tragic experience. Hard not to walk away with some sort of trauma. What do we hold on to that will counteract these bad dreams? Blessed memories... The deep peace Brandi felt during labor and pregnancy. Jordan opening his eyes and looking at us for the first time. His big, warm infant hand clenching our finger - showing us how strong and determined he was. The unexpected peace he felt when we embraced him in our arms for the first and last time.

Life has a rude way of nudging people forward. Reality comes crashing in, thrusting you back into every day events. It never even crossed our minds that we would have to plan a memorial for Jordan. His body is not expected to arrive in Hays until tomorrow; possibly the same time as us. The memorial will be in Hays; however, a date and time have not been set. It will be difficult to enter our house, to see the baby room without our baby. We are thankful for everyone's support and wish to see everyone who would like to visit. But, it will take time to adjust. We have a lot to do and our focus will immediately go to planning the memorial. There will be much more time and closure after the memorial.

Swimming in Effington

It's funny that he even remembers, but big brother Caleb has been asking to go swimming ever since we arrived in Philadelphia back in August. Daddy finally granted him the request and booked a hotel in Effington, Illinois with an indoor swimming pool. Caleb had a blast and thanked us all evening saying, "That was lots of fun!"

Let's just say he's going to enjoy being the center of attention again.

Thanksgiving

Thanksgiving. One of our favorite times of the year. Typically, it is a time set aside for rest, enjoying the company of those we love and giving thanks for our blessings. In reflecting, this may be the first Thanksgiving either of us haven't spent with our families. Our Thanksgiving Day plans this year included attending the big Thanksgiving Day dinner at The Ronald McDonald House and spending some time with our host family. Our hope was that Jordan would be doing well enough that we could take a break from the hospital. It was not in our plans to be driving home today.

As we traverse the long stretch of road between us and home, we can't help but feel lonely. We all miss Jordan greatly. He was a precious little boy and our time was cut short. Today, we have a deeper understanding of Thanksgiving. We thank God for those special 34 days we had with Jordan. We are thankful for His provision for making this trip possible. If it wasn't for our time at CHOP, our time with Jordan would have been much shorter. We are so thankful for Caleb. The time we spend together as a family is so precious.

Although this is not a happy Thankgiving for our family, we are filled with a deep sense of peace. Hoping that all of our family and friends have a peaceful Thanksgiving.

Somerset, PA

It took all of what little energy we had left to pack for the trip home. We had packed for three different seasons and picked up some items along the way. It's a wonder that all four of us fit in one small room for so long.

Our whole trip was planned around bringing an infant home. We all miss his presence. Everything from packing to leaving town was difficult knowing that Jordan - the reason we came - would not be traveling with us.

It took us all day to finish packing, but we were ready to hit the road anyway. We made it to Somerset, PA - almost to Pittsburgh. We have a long drive ahead of us.

A Message from Friends of the LaFond Family

I want to thank all of you for your support of the LaFond family.  In this time of need so many of you have offered to help and inquired as to how you may stand with them during this difficult time.  I would like to thank Michael and Brandi for allowing me to post this message on behalf of their local community of friends in order to communicate some ways each of you can be of support to them.

They truly cherish your comments and words of encouragement.  Continue to post comments to this blog or use email or facebook to let them know how this journey has impacted you and that they are in your thoughts and prayers.

As you might imagine, this situation has taken a toll on them financially.  In addition to the many medical bills and the costs associated with being away from home, Michael has been away from work which has impacted their regular level of income.  There will also be costs associated with the memorial service and getting Jordan back to Hays.  I would ask you to consider how you and your family can help meet this need.  Your checks can be sent to:

Jordan LaFond Benefit Fund
c/o Bank of Hays
1000 W 27th
Hays, KS 67601

You can also contribute using your credit card.  Just click the "Donate" button on the right side of this webpage.  Your support in this area would certainly help to ease the pressure of the financial obligations they face.

For those of you in the Hays area, we have started a list for individuals who are interested in providing the LaFond family a meal.  Please email Heather Jamison at hljamison@gmail.com or call her at (785) 259-6773 if you are interested.  She will coordinate scheduling and other details.    

As more details regarding the memorial become available, additional information regarding their needs will be posted to this site.  Please check back regularly as further details will be posted soon.  

All of the individuals who are part of the LaFond's local community of friends greatly appreciate your consideration and support.

Sincerely, 

Daron Jamison

Going Home

As we left the hospital for the last time, it was hard to comprehend that we would never return. No more trips to the hospital to spend time with our son. Our lives were turned upside down and inside out to be here for our little man. Now that Jordan has move on, we just want to go home.

Even Caleb knows that it's time. He wants to know where his friends are and where our "blue house" is... Caleb will soon be able to find comfort in his familiar routine.

We will miss the company of our new friends in Philadelphia. Our host family, Paige and Jim, became our family in their love and support. The ECMO team at CHOP had no choice but to spend every day with us as they supported our son's life. They are exceptional at what they do and were welcome company. They were always willing to answer our questions and provide a sense of stability when things seemed out of control. The nursing staff that provided Jordan's care 24 hours a day; especially Kristen, who appeared to be Jordan's favorite. He had his best days of life when she helped with his care and she was there the day of his death as well. It was her caring touch that made that dreadful day as beautiful as it could have been for us.

We have nothing to hold us here anymore. Our plan is to leave Philadelphia today. It will take about three days to get home. The long drive will be therapeutic.

Jordan's site will continue to be useful. We are working on the details of a memorial and will continue to post updates as we can.

Our Little Hero

~ Jordan Joseph LaFond ~

October 18, 2011 - November 21, 2011

One Tough Little Nut

Even until the very end, Mommy and Daddy were pulling for Jordan, their tough little nut. A condition known as Congenital Diaphragmatic Hernia, or CDH, claimed our son's life. Although he was the biggest baby in the NICU and a tenacious fighter, pulmonary hypertension was too much to overcome. Jordan received the best treatment in the world for this condition at Children's Hospital of Philadelphia (CHOP).  CHOP was the only home that Jordan knew in his short life and the medical team became our family.  CHOP was fantastic and Jordan was in the right place.  Even the best doctors in the world cannot grow pulmonary vessels.

Big Brother Caleb Giving Jordan His Last Goodbye Kiss

Jordan is our hero.  Our little baby fought through every stage of treatment for over a month.  During the healing phase, when they try to wean life support, Jordan responded fantastically for the first 48 hours.  That is the ugly nature of CDH though.  Jordan lacked the amount of pulmonary vessels necessary for oxygenation.  CHOP can help heal lungs, but they cannot grow vessels.  Because the heart could not push blood to the lungs, the right side of the heart became too strong - mixing both oxygenated and unoxygenated blood.  It was a vicious cycle that proved to be too much.

Jordan fought to the very end.  He inspired his parents, family and friends along the way.  We could never give up because Jordan inspired hope in us.  The first and only time we ever had the privilege of holding our son was right at the end.  It would have been impossible to summon the strength to hold our precious child as he struggled for his last breaths, except that we owed it to him for fighting so hard.  Words cannot describe how much we will miss his presence, but we know that Jordan is not struggling anymore.  He has fought his fight and he inspired so many people.

So many people will be deeply affected tonight and in the weeks to come.  Please accept a warm hug and our deepest gratitude to all who prayed for Jordan.  Our family has taken great strength in those prayers.

Goodbye for now Jordan.  Thank you God for our son.  Until we meet again, we will take strength from having the opportunity to have known our little hero.

Baby Jordan's Last Day & First Time in Mommy's Arms

Jordan's Last Stand

Jordan did not respond to Flolan last night. His numbers have continued to fall little by little. They continue to modify the dose but they are running out of room. They will monitor him very close today. Jordan will need nothing short of a miracle to heal now. Both CHOP and Jordan haven't given up yet and neither have we.

Jordan's Second Honeymoon

"Hello. My name is Dr. Brian Hanna and for the next three hours, I will be your tour guide."

As Dr. Hanna introduced himself, we were both honored and terrified that he drove an hour and a half to be here. We have heard that Dr. Hanna is considered to be the best pediatric cardiologist in the world. For at least the second time as parents, we received a quick tutorial plus a bonus sketch about our son's insides (we had this done with Caleb regarding a condition). The lesson hit like a tidal wave. We've just had instruction on the cardiovascular system by a world renown doctor. The lesson: our son has extremely severe hypertension. For the last two days, we have experienced Jordan's second honeymoon. This is the phase where the patient fools everyone into thinking they're doing okay when, in fact, they are suffering from pulmonary hypertension.

Jordan is very sick. They are waiting to see just how sick. The hope is that Jordan has enough blood vessels to relax in his lungs so they can grow and heal. The concern is that he does not have enough pulmonary vessels to relax and perform the exchange of oxygen. On a chart comparing blood pressures to the number of blood vessels, he showed us a scale ranging from "oh my God" to "normal" and circled "oh my God" for Jordan. The most important indicators they watch now are acid, urine and low blood pressure.

It is going to be a long night of tweaking and very close monitoring.