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.