Funeral Notes for the People that have asked:)

Well, I have been trying to decide in what ways that I would continue our blog. I have decided to continue it in the most powerful and positive ways possible. I know many mothers of Leukodystrophy families follow our blog daily. I hope that when God calls other children home, our blog will give the strength and courage to not be angry with God. I hope it will give them the ability to realize how blessed we are! After all, how many people are blessed with an Earth Angel? I had many friends remind me that last week was the first time I’ve let negativity bother me. I am proud to say that this is part of the grieving process. I am also proud to say that I will no longer allow the devil to get in the way of my HOPE for Hayden. The blessed loving group of friends and family care so much are all that matter. God is giving us so many signs of Hayden. I cannot wait to begin sharing our new journey with each of you!

I have had so many text messages from friends and family that were not able to attend Hayden’s service. We had a song wrote for Hayden. I will try to figure out how to upload it plus the slideshow soon. For today, I am going to share our preacher’s notes from the funeral. Hayden’s funeral was spoke truly from the heart. Brother James Nichols and Guy Burke made it the best and most beautiful ceremony ever. I have heard this over and over.

We began the service with Blessings by Laura Story. Bailey sang it so beautifully. I promise she actually sounded like Laura Story herself.

Hayden’s Aunt Meg, my sister in law spoke a poem without tears about our love for Hayden.

Opening Poem:

You never said you’re leaving

You never said goodbye

You were gone before I knew it

And only God knows why.

A million times I needed you

A million times I cried

If love alone could have saved you

You never would have died

In life I loved you dearly

In death I love you still

In my heart you hold a place

That nobody could ever fill.

It broke my heart to lose you

But you didn’t go alone

For part of me went with you

The day God took you home.

Message:

Today is filled with a hundred questions. Some of these questions have obvious answers. Others are mysteries beyond our understanding. Questions like:

-Why do bad things happen to good people?

-Why did God allow Hayden to be born sick?

-Why did God take him to heaven so young?

-Did I do enough to help him while he was alive?

-Did his life impact others as much as it impacted mine?

I may not know the answers to all of these questions, but I can answer the questions regarding Hayden’s impact on others. Lauren, his mother, shared with me that although Hayden never spoke or walked, that he touched lives all over the world. He received words of courage and encouragement from: All 50 states, Canada, United Kingdom, New Zealand, Japan, Russia, Australia, Germany, France, The Philippines, India, Italy, and Zimbabwe

And in addition to these, Hayden had over 75, 000 viewers of his blog. That’s what I call impact! It was this kind of impact that made Hayden a missionary of sorts, whose reach went far beyond his home in Greenville and far beyond the family that loved him so dearly.

And while he could do very little for himself, Hayden actually “did more” in 14 months, than some people do in their whole lifetimes. Did you know that Hayden… was dedicated to the Lord her in FBC. He met celebrities. He received a letter from Laura Story, song writer of the song Blessings which Bailey sang in the service. He experienced over 10 trips to the beach. The beach had a calming effect on him. With his mommy’s help, he did countless arts and crafts. He had a mama and daddy that loved him more than they love their own life.

Hayden was a very lucky and blessed little boy. And today, his blessings continue because today he is not bound by sickness. Today he can hold his head straight. He can walk the streets of gold. He can talk to the Lord. He can laugh and smile.

About that place called Heaven, here’s what the Bible has to say about it:

“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away (Revelations 21:4)

So you see, Hayden is alright. In fact, he is better than alright. It’s not he that hurts and suffers and grieves. Those are feelings of a fallen world. A world filled with sickness and pain. A world filled with disappoints, crushed dreams, and dashed hopes.

This is our world. Lauren, Brent, family, this is your world. It’s your life right now.

You guys have spent the past 14 months centering you life around Hayden--- His wants, his needs, his everything. And now that Hayden is gone, what do you do?

After Nathan had gone home, the LORD struck the child that Uriah’s wife had borne to David, and he became ill. David pleaded with God for the child. He fasted and went into his house and spent the nights lying on the ground. The elders of his household stood beside him to get him up from the ground, but he refused, and he would not eat any food with them. ON the seventh day the child died. David’s servants were afraid to tell him that the child was dead, for they thought, “While the child was still living, we spoke to David but he would not listen to us. How can we tell him the child is dead? He may do something desperate. David noticed that his servants were whispering among themselves and he realized the child was dead. “Is the child dead?” he asked. “Yes,” they replied. Then David got up from the ground. After he had washed, put on lotions, and changed his clothes, he went into the house of the Lord and worshipped. Then he went to his own house, and at his request they served him food, and he ate. His servants asked him. Why are you acting this way? While the child was alive, you fasted and wept, but now that the child is dead, you get up and eat! He answered “While the child was alive, I fasted and wept. I thought who knows? The LORD may be gracious to me and let the child live. But now that he is dead, why should I fast? Can I bring him back again? I will go to him, but he will not return to me.”

There are three things this passage teaches us:

1.       When our children are sick, we are to do everything we can for them: Lauren and Brent, you guys did everything possible for Hayden. You gave him more of a life than any of us could have imagined possible. You sought out the best medical care for him. Don’t ever question whether you guys did enough for Hayden. You guys did all you could, and then some, for him!

2.       In the midst of hardship and sorrow, run to the Lord and rest in the Lord: King David fasted and prayed for his child. These are both biblical terms that tell us David was running to the Lord for help and trusting in the Lords plan. I know for a fact that you guys prayed for Hayden. And as you have poured out your hearts to the Lord, he has heard you. I know that these past 14 months have been a time of personal spiritual growth as you’ve run to the Lord for help, comfort, wisdom, strength, and peace. Don’t let this be the end of that growth. Over the next many months, your relationship and trust in the Lord are going to be vitally important. So run the Lord in your sorrow and anger and disappointment.

3.       As horrible and as painful as losing a child is, you have to keep on living: Notice that David didn’t crawl in a hole and hid from the world. Now that Hayden is with the Lord, You guys have to go on living. I’m not saying you have to forget him, because you won’t. You will never forget him. But your life shouldn’t stop because Hayden is gone. Hayden would not want that. And the Lord doesn’t want that. So in the weeks ahead, after the dust has settled and the pain has softened some, it will be time to begin the routine of life again. It will feel strange at first and you’ll even feel a little guilty. But that last thing Hayden would want is for his death to derail your life. Blessings don’t derail our life. Blessings make them better. And Hayden was a blessing to us all. So keep on living… for his sake.

To our friends and family:

We cannot thank each of you enough. You have not just “forgotten” about us in the past 14 months. You have been a part of each of Hayden’s blessings and memories. We are thankful that so many people cared and loved our Earth Angel. We know he has changed our entire group of friends. Hayden loves each of you. The memories are everlasting in our hearts.

To Blair Batson:

Our words would never be enough. To Dr. Boyte’s Palliative care team, you have hearts of gold. You always encouraged us and gave us the hope we needed to keep on going. Jodee, for allowing his death to be calming and peaceful. For leaving your family to stay with us throughout the night. All the nurses of 2c for being a friend, a fighter, a comforter, and a care taker. I respect each of you and your jobs. I know you must have the largest hearts in the world. I thank you for this. To the child life team, we loved the hugs, teddy bears, and the list goes on. To Katy and the Speech team, for helping us learn how to use different feeding methods. Thanks to you, he is in heaven a healthy chubby 30lb baby. To Dr. Davis and neurology, for never giving up hope and for always trying new medicines for our angel. When your jobs get tough, remember you are impacting lives in ways that you could never imagine. I know often parents think that it is the “nurse and doctors” faults that they are destating etc. NO NO NO! Yall are the ones doing everything possible to give our children the best quality of care in the world. I cannot thank you enough for EVERYTHING YOU DID! Miracles happen at Batson because of each of you! We will always support 2c and Palliative care!

One week of an Empty Home

Well, Well, Well it has been a week since the last time I fed Hayden and gave him his meds. 9:00 is a very important hour of bonding between us. It is a full moment of being busy with meds, feeds, tube cleaning, singing, suctioning, and the list goes on. This was also the hour of the morning phone calls to all the ones that dearly loved him. They would get worried if I did not call by 10. All these are missing voids in our life at the very moment.  

                I believe we are coping well with the fact that Hayden is giggling, smiling, running, and talking. He keeps telling me, “Just Breathe Mommy Breathe.” I went to his grave twice yesterday. Once, I wanted to go just alone. I cried out to him about my feelings. I cried out to him about how crushed I was. In the meantime, two friends pulled up and encouraged me through my mental breakdown. One friend is a friend I see weekly. The other is an example of true friends that you just don’t see that often. She called and texted all the time even though she was “not good with words” and has dealed with her on sadness. He woke me up in a dream last night. He said do not worry about your feelings mommy. Your friends need you to give them big ole’ hugs from me. He said the fortunate knew and loved me. They are more blessed than the richest man in the world. He said don’t dare worry about the least fortunate and naive. They are less blessed than a person that is homeless. He said mommy and daddy, I love you so much. I pictured him on Earth. He was crying and in pain. He was seizing. I woke up with a smile on my face. I love my little buddy in Heaven that is near one week seizure free!

                We have received over a 1,000 facebook and text messages this week. I have not responded as it is not possible to respond to this many messages. For the people, that  wrote letters and said your not good with words. This made me smile to know how much you care. For the friends that have been “babysitting” us, you’re our world. For the moms that have experienced death, yes you are the only ones that can relate. I must say Hayden was so delicate. He had so many precious years ahead of him. I have to admit he had the prettiest lips in the world.  We love our friends and family so much. Hayden had more people in his life that loved his little body than would ever love us in a lifetime.

                I cannot imagine the people that will be saved in Jesus’ name because of Hayden’s great testimony. If you are one, I would love to know. Hayden’s legacy is just beginning. We will be doing something in February for Rare Disease Day. I know it is a great excuse to get to wear jeans to workJ we will be having a huge fundraiser, dance, meal, and silent auction for Batson. Girlfriends of mine, we are going to paint a mural for the halls of Batson. It is okay, I cannot paint either. I promise you Hayden will watch and lead us through this. Washington School will be selling wristbands that say HOPE for a football game. All the proceeds will go the Hayden’s third home.

                Please pray for us today. No more feeds. No more meds. No more baths. No more kisses. It is all gone until we meet again. It is just the hardest thing to cope with in the world. I hope that nobody I know ever has to face these difficult challenges in the world. I hope that each of you have the ability to be reminded of how precious life is. I hope you continue to keep all the sick kids in your prayers. The children’s hospitals are full of sick kids. Yes, you think it’s bad because it’s a Monday which means a full week of work. You could be holding your child’s hand as they scream while nurses look for that perfect vein. This is the only thing holding me together. The fact that Hayden is no longer needing deep suctioning, oxygen, CPAP, needles, vein finders, ultrasound machine, chest compression, meds, feeding tubes, fundo and gtube surgeries, eeg, ekg,monitors, spinals and the list continues. NO MORE NO MORE! He is running and playing. I thank God each day for such a precious blessing. If you are in the less fortunate group and never had the ability to follow his story from the beginning, I encourage you to do so. You will see how awesome, blessed, beautiful, and amazing he was. If Hayden’s story doesn’t change your life for ever, I will be highly surprised.  Nothing can ever change our LOVE for our baby boy.

                Brent and I have had many slideshow and Hayden song request after people heard it at the service. I am not very computer savvy so it will take awhile. Mornings are always tough because I should be doing meds, feeding, bathing, and suctioning. Luckily after the few hours of morning, we begin to have a good day until dark. A lot of this has to do with Him sleeping with his body touching mine every day for 14. 5 months except 4 times that he stayed with grandparents. Hayden’s service was beautiful. The yellow and bright flowers made us feel his presence. The fact that my sister in law spoke without a tear in her eye. The fact Brent and I developed the courage to kiss him one last time, close the casket, place the flowers on it, and walk away in front of 500 plus people was his presence. We had so many signs throughout the week. Our song was Blessings. “What if Blessings come through rain drops”: We definitely experienced this with a steady rain at the cemetery. All that was done and said was genuinely from the heart.

                Grace Community Hospice donated a tree to us in memory of Hayden. We have found surrounding ourselves with family and friends are vital. We decided to invite them all over to plant Hayden’s tree. Yes, we did read the directions. No, I am very bad with keeping plants alive. Luckily, Hayden’s three buddies watered it enough to make it float. I have always heard, “You can never water it enough at the beginning.” Well, they definitely took care of this for us. The day was beautiful. The sun was shining down on us.

                Chloe, Anne Marie, and VIncenzo will always be close to our hearts. The reason is because they would tell anyone that their best friend was HayHay. They all are worried. They are all missing him. Chi Chi has been so quiet and calm. Until he sees something that belongs to Hayden. He will then run around looking for him. We LOVE this. We NEVER want these three children to forget about their buddy in Heaven. They have the most amazing guardian angel of all. Lisa took the girls to the cemetery to pick flowers. They miss Hayden. They are so glad he is now well. Some children have to learn too much at a young age. These children are definitely going to be mine and Brent’s second kids. I might not be able to spoil Hayden but I am going to be spoiling them rotten. Sweet Mallie is questioning her buddy too. She is so glad he is not sick. She is just very concerned that I might not have given Jesus all the proper feeding and medicine instructions. She does not want him hungry. Chloe says Yes momma, I am glad he is well but he didn’t have to go. I could have made him well for the angels.  Sweet Suzi Paige was heartbroken. She brought a cross to his tree last night. Some just have to learn so much at such an early age.

                Below are pictures from our tree planting ceremony. We are so proud that all of the friends and family that have stuck by our side were able to be a part of this special moment. I wish I would have had time to invite the whole Hayden clan of supporters. Unfortunately, my house would not have held a tenth of them. Enjoy the pictures. Pray that Brent and I keep our tree aliveJ

Our wonderful family minus Jacob who had to go back to college:)

 Chi Chi says UHHHHHHH

 Great Friends

Hey HayHay thanks for making your presence in this photo

 I miss HayHay. When you miss him come see his tree, Can I kiss his tree? A huge hug and kiss to the tree was given.

 Might as well have a little fun in the dirt.

 Let the watering begin

 The guys

 The girls

 My Green Thumb Husband:)

I love my nephew.

 Our tree.

More water

 More mulch

 Near Flood Zone

 Thank you Keri! We love the cross!

Suzi added a cross to his tree. A pleasant suprise when we go home last night.

not much to say

Wow, I promised to continue to blog. I promised to Hayden that I would continue his legacy. I want a cure for rare diseases, more support for the hospital, more positive attitudes, and to help families of tragedies. I have so much to do that my mind is spinning. I have so much to share that I don’t know where to start. I am trying to remember breathing for the moment.  Do I go back to school to be a nurse? A counselor? Do I write a book about coping with death? What about a children’s book? Do I begin a fundraiser for the hospital? What do I do?

Hayden was our angel. Not many people understand what we encountered on a daily basis. Most “new” moms get to complain about no free time, no sleep, ahhh no time to their selves. Well Hayden had to be suctioned 10- 20 times an hour, fed via tube every 3 hours; monitor went off throughout the night. If we went anywhere I would have to take 02, suction, and many more supplies. Only our close friends experienced the challenges Hayden had. The “face book” friends and followers just don’t have a clue. I am dealing with anger. Why? I do not know. Hayden is so much better. Hayden is pain free. Hayden needs no more needles. OMGOODNESS! He is walking!  I cannot get over the friends that betrayed us. I cannot get over the people that leave when times are tough but come back when times are at the worse. Why is this? I do not know. Why is it hurting my soul so bad? I mean the people that stuck by our side are the most amazing people ever. Why am I dealing with anger of the people that chose the better end of the deal? The people that chose to expect me to come to them vs. coming to us. I am guessing this is the devil trying to put us down. No it is not going to happen. I refuse. We have the BEST Friends in the world. I do not care about anybody in the world except for the friends and family that stuck by us for the entire 14. 5 months.

Our friends have already been visiting Hayden. They have been over hours each day. They are amazing. We are blessed. I have learned so much through this past weekend. I hope that I can continue to help the sick. I hope that I will never betray friends in tough times. I hope that I can be as awesome as our amazing friends. I am so sorry viewers but our group of friends is the best. No questions asked.

How are we doing? Well do you want me to be honest or lie? Well I am going to be honest. I smiled as I threw away his medicines and feeding tubes. I smiled as I mailed off a shipment of supplies, diapers, wipes, and a prayer cross to another Leukodystophy family. So yes I have smiled. Our friends have been by our side. We have been enjoying some good afternoons. We have had fun. Until they leave. I love my husband but it is not the same. We are a team with Hayden. We are missing our main player. I am devastated. My heart is crushed. I  feel like going on a shopping spree. I feel I deserve it. Yet, I don’t want anything for myself. I want my baby back. I want him in my arms. I want that one last artwork. I want that one last kiss. Just Breathe Mommy Breathe. Life is back to normal for all around us. Brent and I well were just chilling. We are in shock. We are devastated. No life is not good. No I have not talked to many people. No I am not okay. I lost my world last week. I want my world back.

I will begin a blogging series on HOPE, FAITH, COURAGE, & LOVE. I will continue to share moments from the funeral and tree planting ceremony. We are going to get through this. I believe in MIRACLES AND HOPE. I believe Hayden received both. He is talking, smiling, running, jumping, and playing. I bet that blonde Hair looks like silver silk. Thank You Lord for allowing us to be the parents to the most amazing Earth Angel in the world.

The words of encouragement, the donations to Batson, the food, the love, and the friendship are amazing. We could not have done any of this without you. I am asking you pray that I get over the negative worries of the betrayed. I ask you pray that we forget worrying about that, my heart is aching. Pray that we only worry about the friends and family that cared. I pray that you ask God to lead us in the correct direction. Whether it is to go sky diving, jump off a mountain, go back to school, or just to continue being Hayden’s missionary. I beg that you pray for strength. I just want to hug and hold my little baby one more time. I just want to Breathe without tears. At this moment it is not happening. Thank you to our friends that have not taken off their hope bracelets. Hayden received so much hope. I love you baby boy. The Mississippi Delta has truly shown their support throughout the past five days. Ya’ll rock!

Coming soon….. The beginning of our new journey with the planting of Hayden’s tree…..

Sleep well, hug your loved ones, smile, enjoy, and remember to live each day as your last. I woke up last Wednesday with no clue it would be Hayden’s last. Please remember life can change quickly.

Peacefully in Heaven

Wow! I started this blog awhile back. I started it to allow each of you to follow our journey. I have loved blogging as it has helped clear my mind. If any of this is misspelled or doesn’t make sense please understand. I knew when I began blogging that one day would be the hardest blog of all. This is going to be by far the blog that I have dreaded. Before I start, On Tuesday, I blogged about to Earth Angels. I blogged about praying for them to receive a miracle in surgery. They did well and we are so blessed that they are continuing to do well. I barely mentioned Hayden in that blog. I was considering us so blessed. Hayden was cooing, smiling, and doing great. We were heading to Destin at two on Wednesday. Life was great!

Our awesome hospice nurses came to check him Wednesday morning. He had an increased heart rate. We decided to go to Gillespie’s office for a quick x-ray before leaving for vacation. No fever, No green secretion just our healthy little earth angel. We received the x-ray results to find that Hayden had a small amount of pneumonia. We said well let’s get him to Blair Batson. They can fix it! They are our heroes. We started by car to Batson. He began DE stating into the 40’s. We pulled into Indianola. They are simply amazing. The doctors and nurses were awesome. They swiftly got the helicopter from UMC. In the meantime, Hayden was down to 2 -4 breaths a minute. We were screaming just breathe Hayden breathe. He would breathe. Wow our fighter loves us! The helicopter got their only one parent could ride. I had a feeling that Brent would not see him alive again at this point. I just felt positive he would die on the ride. I called my friends Lisa and Amy Oakes to meet me at the helipad. I figured I would need consoling as it would happen. Well, the helicopter ride was beautiful. He was breathing 14 breaths a minute. We got to Batson. The x-ray looked better. We began to treat pneumonia. All of our family was there to love Hayden. Jennifer Rutledge (a photographer) happened to be on the hall snapping photos of another family. She snapped some of us. I told her I would call her again when he was well.

The family left around 9:30. By 10:30 we were calling family to turn around. We needed them here with us. Our amazing nurse Jodie came back to the hospital to be with us. Hayden’s oxygen began dropping. Man oh Man he was sleeping peacefully. His hands were wide open. At this moment, it was time to make the decision of an external ventilator (CPAP). We chose it. I could not let him go. I could not stop fighting. I started regretting that decision as I knew Hayden would never walk nor talk. He would continue seizing here on Earth. We told Hayden to go home. Enjoy walking and dancing. Play ball, jump high, and encourage us to keep fighting for kids just like him. I held him as he took the most peaceful last breath. Brent held him as his peaceful heart stopped.

Hayden’s soul went to heaven. He is partying like an angel. I am pretty sure God looked at him and said Well-done son, I am proud of you. Hayden was a missionary that could not walk nor talk. He allowed us to talk for him. We were so blessed to be the parents to a missionary that impacted families in over 20 countries around the world. Life is a blessing. Each day is a memory. Love your family. Cut out the drama. Cut out the hatefulness. You never know what moment will be your last. Trust me it can happen in the blink of an eye. Healthy and Beach bound with his awesome Uncle Todd and Aunt Lauren at noon and within 13 short hours he receive his wings.

Fly high baby boy. Mommy and Daddy are hurting and are now having to remind ourselves to breathe. We are so thankful that you celebrated Aunt Kelli’s birthday a week early. We are so sad that we are going to be celebrating your homecoming on her birthday. It kills my soul. Promise me, you will look after each of us tomorrow. Promise me, you will show us constant signs of your love. I am going to miss being your mommy on Earth. I can promise you, I will always be your mommy and you will always be my number one. You will always be Daddy’s little boy. We Love you to the mom and back and man oh man; we have fun days ahead when we get to heaven!

Funeral Arrangements:

First Baptist Church

Greenville, MS 38701

Visitation 930-11

Funeral 11

Graveside immediately following

Donations in Memory of Hayden:

Blair Batson Palliative Care

C/O Amanda Alliston

2500 N. State Street

Jackson, MS 39216

Want to smile? As Brent and I past Oakes Toyota today, we watched a blue balloon fly off of a car into the skies. Mary Elizabeth Oakes (Ava Grace’s Aunt) and Hayden are now buddies in Heaven. They were letting Ava Grace know that they love her, care for her and are fighting for her miracle.

Wow! It has been a long day. I am sure many people have a lot of things that they would LOVE to complain about. Yes, I am guilty of the same thing. I have found myself complaining a lot over the past 48 hours. Hayden has had some rough moments. He has been “snoring” really loud. His breathing has been rough. He has been crying a lot at night. We have had him hooked up to the monitor all day. Luckily, his oxygen and heart rate are staying normal. We had a blue spell yesterday. Thankfully, Hayden’s awesome nurse was sitting here with me. Thankfully, WE ARE HOME! WE ARE HOME! We are able to go and do as we please with him.  We are NOT IN THE HOSPITAL like so many families across the world. Some people are not as fortunate as us at this very moment. If you had time to pull up my blog, I hope you have time to join me in pray for Hayden and two special babies. Often, we find so much time to complain and fuss. We sometimes forget how fortunate our lives truly are.

First, please keep the Oakes family in your prayers as Ava Grace is going to undergo another surgery. She is the prettiest little Earth Angel. I held her last week! I must admit it was the best feeling in the entire world. She has fought so hard for her precious life. Her family has never left her side. She will be undergoing surgery tomorrow. She is having a VP shunt placement from her ventricles in the brain to the abdominal cavity. She has enlarged ventricles. Hopefully, this will stop the swelling. I have full faith that the Drs. at Blair Batson will take awesome care of her. I know that she will recover quickly. The problem is mommy and daddy. Surgery is such a fearful thing for parents. Please pray for sweet Ava Grace and her awesome family. Please continue to pray for her so that she can continue to grow, get stronger, and come home in the future. She is beating odds that nobody ever expected. HAYDEN IS PRAYING FOR YOU! STAY STRONG.

Next, a few days ago I saw a Facebook prayer request. I saw another request yesterday. Both of them were for the same family. I immediately found their page and began talking to the mother. I felt that I must share our story. She feels that her life is over. That she will never be the same. No, her life is not over. Yes, her life has changed because she is now the mother to an awesome, strong, and adorable Earth angel. This adorable Earth Angel will also be having surgery in the morning. The family from Tupelo is undergoing surgery at LeBonheur. I so enjoyed talking to Gunnar’s mom. I have full strength that their family will find a strength given by God that they never expected. I reminded them that when Hayden had his diagnosis, I hit the bathroom ground screaming HELP, HELP, MY LIFE is OVER. I screamed WHY? WHY? WHY? Not US. Not Hayden. I quickly reminded her that I quickly was able to realize that I am so BLESSED to be Hayden’s mom. He has made us realize how precious life is. I HOPE that if you are reading this you will pray for Megan and her husband. Please pray that they gain the strength to fight for Gunnar. Please PRAY THAT GUNNAR shocks all the Doctors tomorrow! Please pray that it is simply a scare. Let’s pray that the Cystic Fibrosis is the only issue that they will have to deal with. Please Lord; do not add anymore cyst, tubes, IV’s etc. to this baby’s life.  Please pray for this awesome family to stay strong as the Doctor’s take extra good care of their baby.

The Following Post is from Megan (as you read it you will shed a tear, you will be reminded how precious life is, and Hayden and I HOPE that you join this family in FAITHFUL PRAYERS):

From Megan......I have sat in the family room here at LeBonheur on the 8th floor where we are staying with our sweet baby crying tears I have never cried. Today has officially been the hardest day yet. I apologize for the long wait between updates, but I simply had to come to terms with everything on my own first before I could even begin to think about being strong, much less wrapping my head around it all. We are taking it one step at a time. We need our prayer warriors now more than ever. I've never felt so broken, so helpless, so tired, and so desperate for prayer in all my life. The only thing I can do to help take away some of the pain is to write, so here I am.

This morning the doctors came in and Gunnar was lying on his back and he was breathing as he has been for the past couple of weeks…loud and scary. His oxygen was fine, but we learned today that doesn’t mean that he is getting everything he needs. Dr. Schoumacher listened to his lungs and said, “It is definitely coming from his upper airways. His lungs sound perfect today. ” We were so happy to hear at the time that at least his lungs sounded clear today. Then he flipped him over and the loud breathing slowed down immensely. Dr. S looked at us and said, “Hmmm…this is a clue.” You could tell a million light bulbs were turning on inside his head, and you could most definitely tell that this threw in a whole different shaped puzzle piece into the mix. He quickly ran through everything that would be coming up test-wise throughout the week on Gunnar and left the room after answering a few of our questions. He looked as though he was on a mission.

Not long after my mom had planned to come with me so that I could go to the bank downtown leaving Gunnar with his PopPop, BB, and his daddy for a little while. As we were walking out the door we saw Dr. S and his assistant physician down the hall on the computer. I assumed they were working on someone else’s case, so Mom and I proceeded to the closest elevator. Both doctors stood up and held their hands up to walk back to our room. We walked back, and this is when we received the news.

Dr. S and Dr. H called in several other ENT doctors with them to revisit the DVD that was created during Gunnar’s bronchoscopy last week to see if there was anything that would cause him to be breathing better on his tummy. It was then that they discovered a tiny shadow on his windpipe. They said the shadow should have been much darker than what it is showing if the airway was clear. The ENT doctors agreed and they are now speculating and feel most confident that Gunnar has an extremely rare subglottic cyst blocking over 50% of his airway. On Wednesday, he will be put to sleep, and the ENT doctors will be doing what they called a rigid bronchoscopy to confirm there is a cyst. If there is indeed a cyst, Gunnar will be given a tracheostomy. The trach will stay in for weeks until it is healed. Once healed, he will go into surgery to begin the first step in removing the cyst. They told us he will be put to sleep around three different times at different times to remove the cyst laparoscopically over a certain period of time. The trach will stay in at least the first year of his life if not longer because they do not want Gunnar eating or anything through his mouth to stay clear of where the cyst was to allow it to heal. He will have a G-tube put in his tummy throughout this time for us to feed him.

Trach + CF = exposure to germs and infections that is even that much scarier to think about right now. The thought of possibly not hearing my baby’s coos and cries the first year of his life is devastating. What is even more devastating is that this has nothing to do with everything else going on. Dr. S said, “Unfortunately, this baby has one of many different problems going on right now…on top of having a chronic illness with Cystic Fibrosis.” This cyst is a completely new finding. While having the rigid bronch on Wednesday, we still have to address his lungs and heart. His left lung as mentioned before is being compressed by something pulsating (around the heart) against it making it that much harder to breathe normally. Well, today we found out that when they reviewed the DVD that Gunnar’s left lung is not just compressed 80% but more like 90%.

In addition, we have to continue treating the staph found in one of his lung cultures with antibiotics.

Also, we are still trying to determine whether Gunnar is aspirating his feeds which will be done in a long, more in depth swallow study which will possibly be tomorrow. We first heard this morning he would have this done at 2:00 today, but that was rescheduled once the possible cyst was found. Instead we were taken down to radiology to have a esophagram completed as the doctor’s wanted to rule out a vascular ring which we found out he does not have; however, they did detect something was pushing against his esophagus (“large indention”) which they think is either a large mass or an enlarged heart which will have to be fixed with surgery. This is what is also causing his lung to be compressed as well whatever it is. This is totally separate from the cyst and upper airways issue. Watching his tiny body being strapped down tightly to a board with his tiny arms being placed above his strapped down forehead…yeah, let’s just say it was not an experience we ever wish to relive. He cried, I cried...just plain tough.

All of this was told to us in that one little doctor room visit when we got pulled back to the room. Talk about a lot to take in for one day. This mommy and daddy are exhausted. Our request today is that you simply DON’T STOP PRAYING. We are not going to accept that this cyst is present until it is confirmed on Wednesday. They said if it is not a cyst it could be a number of things, but they feel most confident it is. Please pray this is not a cyst and our baby will not need a trach or a G-tube inserted in his tummy. I am crying out for help…and the only thing I know to ask for is prayer! After all, it is the most powerful thing you can give us right now. Please, I am begging you. PRAY. Prayer changes thing and miracles happen every day. Even the ENT doctor said we may be proven completely wrong when we go in there and to pray nonstop. Man, does it feel good to know that our doctors are believers! No one is touching my child that doesn’t believe. I am asking that each of you get on your knees and pray for my child. The doctors are praying for Gunnar, the nurses are praying for Gunnar…Gunnar will be healed!

Speaking of nurses, we have been so blessed. A special soul entered into our life when stepped foot into this hospital this morning. Her name is Lindsey. Lindsey has been through a lot including a car accident when her family was told she wouldn’t live. Even more…Lindsey had a trach. God placed Lindsey in our lives today for a reason, and I just know that reason was to help comfort me in knowing doctors do not know everything.

GOD IS OUR PHYSICIAN, OUR FATHER, OUR EVERYTHING. Only God knows His plan for Gunnar’s life. It takes one tiny minute, maybe less to share my post to your timeline. I want everyone that knows you, knows me, and knows Gunnar to PRAY. Spread his name all over this country. We need prayer and this family BELIEVES! Don’t spend a single second praying for me…pray for my child. Josh and I will be okay…we will get through this. Is it tough? Yes, it is a nightmare. I feel like this time in our life to enjoy our newborn baby is being taken away from us. BUT…you know what? We can’t think like that. Gunnar is a blessing! He was given to us for a reason, and we must celebrate! Celebrate that God is doing BIG things in our lives and give him all the glory for everything He doing for my baby.

In prayer and In His Grip Always,

Gunnar’s Mommy -Megan G. Herndon

Lastly, thank you for checking Hayden’s blog tonight. Please continue to pray for our precious son Hayden. Please add sweet Ava Grace and sweet Gunnar to your prayers. Together, we can see miracles occur in all three of their lives. We must believe in miracles to receive them! Lastly, Facebook friends follow their progress on “The Gift of Gunnar” facebook page. Let’s show this family the love and support that they deserve. I am so thankful that God chose these awesome parents to take care of his awesome Earth Angels. I must say I watch Hayden seize daily. I get frustrated and angry. I cry and lose strength. When I see families undergoing surgeries, I am reminded life could be much worse. Take one day at a time. If it is a bad day, take only a half of a day at a time. If work or school makes you angry, remember life is a blessing. Tomorrow is not promised. Enjoy each moment. Make each day a special memory. Thank you for 14.5 months of faithful prayers and love for our family.

We survived another fun filled weekend! Hayden enjoyed Friday night with his Nana, Papa, Jacob, Andrew, and of course Brent and I. We took him to Lost Dog for some yummy pizza. We then went to the lake with friends on Saturday. It was 85 degrees. We definitely enjoyed ourselves! Sunday, Hayden was kind of “scaring” us. He was breathing at an odd pattern. He slept most of the day. His Aunt Whitney came to the rescue to watch him while I went to Wal- Mart. WOOO Thank You Lord for helpful friends.

We had a party to plan! Hayden is so blessed to have so many awesome friends in his life. I can tell you that he is loved by so many. The bond that some of our friends have with Hayden is amazing. I can promise you one thing; you know you have genuine, caring, and kind-hearted friends when they don’t leave your side during difficult times. In fact, they get that much closer to your side! Hayden woke up so excited about the PARTY. I believe he thought it was for him. I kindly explained to him that he has 2.5 weeks left until he is 15 months. He promised me that he would be patient. We cooked and waited on Hayden’s “Aunt” Kelli to get here. She had NO CLUE that a lot of her friends and family would be waiting here on her. We had a grand time. Hayden and Cash were swapped from person to person as everybody enjoyed baby time. We laughed, ate, and enjoyed each other’s company.

My nephew never wore this outfit so Hayden glady borrowed his outfit. So precious on him! I love the high button outfits. He was excited and looking forward to party time!

"Aunt" Leathe came two hours early so she could sneak a lot of loving.

 He was so excited to see his friends! Hayden loved all of the love that Brianne had to share!

 Happy Birthday Kelli! We are so thankful to have friends that loves our child like you and Clayton do. Thank you for being a shoulder to cry on, a friend to laugh with, and a loving person to our child.

 I LOVE that all our friends are still wearing their hope bracelets! All the guys are still proudly wearing them. We must admit it warms our heart:)

Even 31 year olds can eat cake and blow out candles. Hayden was still slightly confused as to why we were singing to her vs him. He thinks ALL parties are for him! He did get a bit of the ice cream though:)

 Sweet Jordan has texted many days to check on Hayden. Her encouraging words have been very helpful on bad days. I am so thankful that she was able to meet Hayden! I know he loved her!

 Hayden was thinking really hard about what to give Aunt Kelli for her birthday.

We thought about gift certificates. We thought about clothes. HMMM? What should Hayden get her? We finally decided that the best gift of all would be his feet on a stepping stone. Yes it made his Aunt Kelli cry big crocodile tears.  She loves Hayden so much. I got some pretty ugly looks from his Aunt Whit and Aunt Lauren. I believe they were jealous! Looks like we will be making more stepping stones for Christmas gifts this week! I am so blessed to have such caring friends. Hayden is so blessed!

I found the following quote on somebody’s Facebook this morning. It truly reminds me of my life. I have learned who cares. I have learned who loves. I have learned that most of our friends are closer to us now because of their love for Hayden. I feared at the beginning of his diagnosis that we would lose friends young and old because they wouldn’t know what to say or do. I feared they would just run away.  Luckily, almost all of our friends have become more like family because of their bond with Hayden. Our friend’s text daily to encourage Hayden to have a good day. Each friend is a blessing to our life. Each friend has become more like family. They have all encouraged us more than we could have ever imagined.  They have cared for us on the good days but more importantly the bad days. I am so thankful for each weekday and weeknight that our child gets to share with our awesome friends. YALL ROCK! THAT’S EXACTLY WHY HAYDEN LOVES EACH OF YOU SO MUCH! LOOKS LIKE WE WILL BE ORDERING MORE STEPPING STONE KITS TODAYJ EACH OF YOU DESERVE ONE!

Hayden has seemed pretty peaceful in the past few days. His hands have been opened more often. He has even been smiling. We are still seizing. Fortunately, only around 6 times a day. Yesterday, he was seizure free until 6:00p.m. We almost had another 24 hour day! This is a huge little miracle. Hayden has been using the restroom on his own. This is huge too! Normally he gets constipated before going to the restroom. All in all he has been feeling good. He is officially 30 lbs. Can you believe it? He is one growing little Earth Angel!