Blakelys TEF Journey

Our courageous daughter Blakely Fay Larson & my husband Tylerand  I have started a special fund for Blakely to help with medical costs which have been building up since Blakely was born with many procedures, hospital visits and surgeries and special medications. Blakely has just overcame an intensive surgery which required for all of us to travel to Boston Children's Hospital from Kansas City early this month. After being advised from her doctors at Kansas University Medical center, they found they were unable to fix the problems Blakely had and recommended we get her to Boston. We found a wonderful Doctor at Boston Children’s who specializes in the surgeries Blakey needs. This program was specifically created for TEF kids. Blakely was opened up again on her side on December 5th.  She holds 3 special scars from her surgeries, all located on her right side. The surgery included Blakelys airway to be opened as was colapsed, the trachea to be straightened as it was kinked and narrowed, her original connection that she had a 2 weeks old to be repaired and a pouch removed from her esophagus. The condition is called Tracheoesophogal Fistula (TEF) along with tracheomalacia And laryngomalacia. With TEF a baby is unable to swallow from the mothers womb and when the baby is born they also have troubles breathing. It is also defined as the esophagus which connects the mouth to the stomach, is shortened or closed off (dead ended) at some point along its length. If not repaired a baby cannot eat food by mouth. These kids carry a bad cough which projects that they are sick, however this is their normal. There are a few types of this condition and Blakely had Type C long gap. After surgery we will be staying in Boston for Roughly 4 weeks of recovery and follow up tests. This surgery was extremely serious but had to be done for Blakely to live a normal life. She spent 61 days in the NICU upon birth and has battled hospital visits every 2-3 months ever since she was released from the NICU from getting sick so easily and I have had to receitate her twice.  The in depth details will be posted as I will give chapter by chapter of Blakelys Journey and how it all began to where we are now, I will include it within the comments as well as it will be streamed on FB.. We are hoping that you will consider making a donation to the cause, no matter the amount, and for those who want to help but can’t donate right now, please continue with your prayers & thoughts in any denomination. Our biggest hopes and prayers is that our angel will get to come home all healed and in time for Christmas. God bless you all!

“By the grace of God, I am what I am.”
— 1 Corinthians 15:10

BRAVE BLAKELY FAY

Let's start from the very beginning...... January 2015...... it all started with a side pain. Something that just felt off. I went into the doctor to get checked and waited for the results. The doctor let me know everything was fine. However, my blood work had come back and I was given the news that I was going to be a mommy. The doctor had decided to go on with further results as they had a concern for an ectopic pregnancy. After many tests, God answered our prayer; and our baby was in the right spot. Hearing her heartbeat for the first time was better than anything I had experienced before. My husband and I decided that our living situation in Seattle would be better if we moved to kc so our daughter could grow up with her grandparents around and all the family around. Best move we ever made. On our move home to kc , I was 6 months pregnant, driving a long haul of 26 hours split up within 3 days. As we were traveling I kept having the most uncomfortable back pains. It was getting pretty unbearable. We got to rock springs Wyoming and hit the most ugly storm I've ever seen. The sky was pitch black, rain so hard you couldnt see a soul around you. We stopped there and I was immediately sent into the ER. The nurses checked me and found that I was having full blown contractions. At 6 months along it was terrifying. They gave me a few different drugs to stop the contractions, however none were successful. The doctor finally came in and recommended a drug called procardia which is meant to treat chest pain. Lucky, it was a success and stoped my contractions. I was left with a bottle of those to take with me to make our trip home. Back on the road we went the next day and finally made it to Kansas.

On August 4th, I left early for work that day. I had a afternoon appointment with my Obgyn. I had an hour of time to kill so I decided to go up the road to Walgreens to get my dad chocolates and a card to feed his sweet tooth for his Birthday. I started to feel like I had peed my pants. So I waddled along to the bathroom and continued my shopping. Soon after, I felt it again. I decided it was best to get going and get in the car so everyone doesn't witness That. As soon as I checked out and went to sit in my car, my water broke. I drove to the ER to get checked in as it was that time. I called my husband and just cried telling him it was still too soon. 6 weeks early than my due date. As I got placed up in a room the weather shifted very quickly from bright and sunny, to a very angry storm, very similar to the one we experienced in Wyoming. I felt like each storm in both situations was God trying to tell me something. That he will never leave me, nor forsake me. Our lives also have eternal significance. No man is an island. Life is not just about myself. These storms have given ample opportunity for me to understand that life is about something bigger than we are. God was speaking through those storms and I'm glad we were listening. I laid in the hospital bed for 2 days and then On August 6th, 2015, Tyler and I had a beautiful baby girl. Blakely Fay. She was 4lbs, 8oz, and arrived at 11:51pm just in time to share my grandfathers birthday.

When I held her for the first time she was perfect. We were so in awe of being parents and couldn't wait to begin life with Blakely. After giving her back to the nurses to do her weight and lengths, they noticed something was wrong with Blakely and that she had this odd cough and trouble swallowing. They took her back to the nursery and my husband and my dad walked back together to wait. When the nurses explained to them that something wasn't right with Blakely, my husband broke down as my dad comforted him. When my husband got back into the room, he told me something was wrong. I blew it off just thinking he was misunderstanding them and I told him everything would be fine. A nurse came in to the room shortly to explain that Blakely has TEF along with 3 holes in her heart. We had no clue what that was and never saw anyone else have this condition. She let us know that they didn't have a level 3 NICU and needed to transport Blakely as soon as possible to get her the care she needed. She also said there was a surgeon there that could connect Blakelys esophogus to her stomach. She was slightly familiar with this condition as she had seen one before so she knew exactly what it was when she looked at Blakely that she had TEF. I asked the nurse how this happened, she told us TE fistula is a birth defect, which is an abnormality that occurs as the fetus is forming in its mother's uterus. When a baby with a TE fistula swallows, the liquid can pass through the abnormal connection between the esophagus and the trachea. Also the reason why I was measuring big was due to the high amount of amniotic fluid that Blakey was unable to swallow in the womb, which the amniotic fluid is important in developing the baby's lungs. There is no exact answer as to what the causes are but we know there is an interest for us to find out why and how. I got to hold Blakely one more time before they took her and noticed she had a tube down her throat. She always had that tube in her throat all the way up until she was able to start eating by mouth from the bottle after her connection.

About 8 hours later they sent her to KU hospital in a small blue contained box. 10 hours later I left the hospital and we made our way to KU. Blakelys esophogus was connected when she was 2 weeks old. Blakely spent 61 days in the NICU. She fought a horrible infection, we believe was from the chest tube, had one failed chest tube, so a 2nd was added, had a blood transfusion, and issues with her lungs. She was intubated and extubated along with the surgery process. She struggled horribly to gain weight and it was a battle to get her to eat her bottle without vomiting it up. She had and still has horrible reflux which goes hand and hand with this condition.

After she was released from Ku, we finally got to take her home in Oct 2015. She had to come home with EPO injections that I had to give her to help with her hematocrit since she had a blood transfusion and would help her produce red blood cells. The EPO injections were the same thing lance Armstrong used to increase his endurance and stamina. Her first follow up appointment was 2 weeks later, so as my mom and I got her ready and in her car seat, I all of a sudden heard gasping coming from her. She had refluxed up her bottle and her airway was completely blocked. I raced to get her out of her seat, but I was losing her. As I pulled her out she was blue. I grabbed her diaper rag, laid it on the floor in the garage and laid her head on it to start doing CPR. I was getting no success with that so i turned her to her left side so she wouldn't aspirate in her lungs, grabbed her suction bulb and put it down her throat to try to pull out as much milk and mucus clogging her airway. I remember working so fast and not stopping that it felt like I had done it 100 times. I stopped and turned her towards me and she was white and stiff. She was gone. I just remember thinking how am I going to be able to bury my child? How could I live in a world that we created for Blakely to be in? My mom was on the phone with 911 in the background and all I remember was hearing the ambulance from afar. I remember sitting there on my knees in my garage holding my lifeless baby and hearing God yelling at me loudly to suction her one last time. I grabbed the bulb and went as deep in her throat as I could go and pulled out so much milk. She jolted in my arms. But was still very still. I got up and put her ear right up against my heart to hopefully rhythm hers with mine. And then it hit me. I ran out to the drive way turned her head outward, and a huge gust of wind blew right in her face and she took a breath. Blakely came back to us. The ambulance and fire trucks showed up seconds after her breath. We were readmitted for a few more weeks then took her home again.

A few months later, Blakely got very ill, which required yet another admission. Every 2-3 months going forward, Blakely was admitted into the hospital for getting sick so easily and it became quite dangerous. Last winter, my husband and I were driving and noticed some moaning coming from the back seat. As I turned around to look she was blue and had once again choked on her Milk from her reflux. We pulled over on the side of the road as I administered CPR along with the other steps I took on the last scare. I begged her to just breathe and I couldn't believe this was happening again. Thank God, we got her cleared and in an ambulance back to Ku. I have had to resuscitate Blakely twice. It was the most horrible and scary feeling I have ever had in my life and probably will always be. I cannot express enough the amount of fear and pain that still lives inside me over those two moments. I still have horrible visions of the way she looked when I tried saving her. It still haunts me.

Blakely still continues to gets sick all the time, she has this barky cough which was her norm but we fought such bad reflux with her that she had many moments of coughing up blood. Those were major scares to us and my husband and I were always facing such fearful situations with her. It was becoming so scary to us that we were begging for a miracle to happen for her life to be beautiful and without any pain or discomfort. She has to sleep at an incline due to the severe reflux and still continues to do so. There is still a fear of her airway constricting again. We have always struggled with the worry of keeping Blakely well and it became hard to keep her away from other kids as we knew how bad Blakely wanted to go play and be like the other kids. Blakely has never been able to eat like you and me. She has always had problems choking on foods, and only could have soft items like avacdados, smoothies, scrambled eggs, and yet would still choke. It was a struggle taking her out in public over the fear of her choking and people around us not understanding. With her getting sick all the time and all the choking we decided that her GI doctor needed to do an Endoscopy to see what was going on.

The findings were not what we expected. She had a major structure in her esophagus where the connection was made which was why all the choking was happening and it also contributed to her getting sick since bacteria was harboring in that small space. This doctor sat us down in a private room and let us know he was not comfortable with doing the surgery and that this wasn't his expertise. He mentioned we needed to go to Boston. When we heard Boston we knew it was more serious than we thought. A few days later, I decided to get all the details worked out, see if Boston could get us on the books for some tests and surgery and luckily they had an opening in December. So, we got Blakely on her first plane ride paranoid that she would get sick along our travels since she is so susceptible. Luckily we made it through without an illness. Her first test was to check her heart which was all good. Her second test was a CT scan on her airway. And her third test was an endoscopy and bronchoscopy. We had almost 3 appointments per day along with 2 procedures all in one week. The findings all came back after her endoscopy and 4 of her surgeons sat us down in a private room. They explained to us that Blakelys airway was almost collapsed, her trachea was very narrowed, her esophagus was also narrowed along with a pouch that had grown off of the esophagus, her original connection was not good and they would need to repair it, and that she had also had a hiatal hernia which was a contributing factor to the reflux. All along we though it was just a narrowed esophogus. Boston found so much more. We were devastated. We knew this surgery was going to be intense and long and we were a nervous wreck. Brave little Blakely underwent an extreme surgery on Tuesday December 5th. Right before they started surgery, I was able to walk in the operating room and hold her as they masked her as she fell asleep in my arms. That was so hard. We waited in the waiting room for 10 hours for the surgeons to complete this surgery. It felt like a lifetime waiting. When we got to see Blakely for the first time after surgery in the ICU, she laid in a 48 hour coma paralyzed. This is one way you never visualize seeing your child. A little under 48 hours, They began to remove the paralytic and we watched Blakely cry with no sound. The breathing tube in her mouth really bothered her. She had a successful extubation and began to be able to look around and we could hear her voice again. Blakely holds 3 beautiful scars on her right side. People have asked me, are you afraid of what her scars will look like? I say no. She is a testimony to God and those are the scars she suffered to be where she's going to be in the future. Her scars and wounds are the place the light enters her.

48 hours later we were moved down to the floor for recovery and got her chest tube removed Friday December 8th. She has been in a lot of pain and they have been administering her the appropriate pain meds. Her esophogram was moved from Tuesday to today which will require Blakely to swallow a barium which will show them how successful the surgery was and If there is any leaking where they connected her. We have come home for Christmas but go back on December 26th for the week for her procedure the 29th. Please pray for a good report so we can continue to recover successfully and that this surgery will have been a success from what we see on this next procedure. This condition is lifelong and she will be followed by Boston every year to make sure all her surgeries are still holding up. We see the light at the end of the tunnel and will continue to do everything we can to fix Blakely inside. Brave Blakely Fay gets to share her testimony to all and we are so blessed to have a brave strong little girl.

The doctors have plans to see Blakely multiple times which will require lots of flying back and forth to Boston. Not what we hoped for, but we know she is in the best care.

My husband and I wanted to share this as soon as we found out about Blakelys condition, but we decided to keep it within the family. We weren't quite sure how to cope with it all, and finally decided that Boston was the time to finally share her story and testimony to get awareness out and surrender ourselves to God in every way. Thank you all for so much love and support over the last few days.

Please share Blakelys condition so we can get as much awareness out about this condition as possible. We would love for them to research more and continue to grow their program so all TEF babies have a fighting chance of a healthy life. If you want to support Blakely, Her gofundme web address is below:

https://www.gofundme.com/blakelys-tef-journey