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.