Noah Robert Kiger
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Noah’s Story
Hello! Thank you for taking the time to see my page. Let me tell you about myself! When my mommy and daddy found out I was a boy, everyone was thrilled because I have 2 big sisters who were just wanting a little brother so badly! When my mommy was 7 months pregnant in August 1999, her OB doctor noticed in an ultrasound that she was carrying a lot of fluid around me. Her doctor sent her to a prenatal specialist who took one look at the ultrasound and said that he did not see my stomach. He then said he was certain that my stomach was not attached to my esophagus. He told my parents that I had a tracheoesophageal atresia or an esophageal atresia (to read more about this visit http://www.eatef.org/)
They also said that I may have many other anomalies, but everything else looked fine on the ultrasound. They brought in a genetic counselor to speak to my mom and dad. They were overwhelmed. NEVER did they think that any extra fluid could mean something was wrong with me! The prenatal specialist said that my mommy needed to see him twice a week for ultrasounds and that she would have to deliver at his hospital in Indianapolis (Methodist Hospital), which is an hour’s drive from home. So, she did.
Mommy began having contractions from all of the pressure of the fluid and so she was put on bedrest...which is not easy when my sisters are 5 and 2! Mommy’s fluid level kept rising and rising, so the doctor said that he needed to drain some of it to keep me from arriving too soon! So, he did drain fluid.....mommy had 3 separate drainings for a total of 7 liters drained! WOW! They could have drained much more, but it was VERY VERY uncomfortable for mommy to go through, so she just stuck it out! She did have to go to the hospital 2 times, because she was in labor and they had to stop it. They also put her on medication at home to keep the contractions from coming.
Finally, at the beginning of September, the doctor began testing my lungs for maturity. He was afraid mommy would go into labor and since we lived a good distance from the hospital, then he wanted to do a scheduled delivery since I was arriving by C-section anyway. Well, each week my lungs were not mature...I was not due until October 12 anyway. I wanted to wait until then, ya know! But, then I became restless and decided I needed to see this world, so on September 24, my mommy’s water broke...she could not find my daddy at work...so my grandparents took her to the hospital. We made it there just in time for the “GREAT FLOOD” to arrive...and Daddy came there soon after!
I was born at 2:42 pm via C-section and in respiratory distress. I struggled to cry and breathe...mommy cried when she heard me and kept asking daddy if I was okay. A nurse brought me over to see her before taking me to the NICU. They put me on a ventilator and under a large warmer...then they did a test to see if my esophagus was attached to my stomach. It wasn’t. A neonatologist went to see my parents and told them they were not sure exactly what I had yet, and EA or TEF, but it was one of them...or both. She said that they were beginning tests on every organ...she said that since toes 4 and 5 on each foot were conjoined and that I had an undescended testicle, that they needed to do genetic testing. My mommy cried, but knew that I would be okay. God had brought this wonderful little boy into the world for a reason and mommy just knew that everything would be fine.
Finally, they wheeled mommy’s bed in to see me in the NICU. I weighed 6 pounds 14 ounces and was 21 inches long. They said I was born at 37 weeks and was “huge” compared to the other babies in the NICU. And from then until I left the NICU, everyone talked about my thick dark hair that stuck straight up in the air! Well, each test that they did on me kept showing that everything was fine, except for some minor hydrocephalus (water on the brain) and slightly enlarged kidneys. They determined that I had a “long gap” esophageal atresia...over 5 1/2 cm. We then met my WONDERFUL pediatric surgeon, Dr. Thomas Rouse. He was great at explaining everything to my parents by drawing diagrams. He said that he wanted to wait to see if my esophagus would grow closer to my stomach. They would do x-rays every 3 weeks to check to see how it looked. Dr. Rouse said that he would not doing a surgery to reconnect them until they were 2 cm apart...so I had a long way to go...or should I say GROW!
Since I could not swallow, I had a tube in my throat to continuously suction out the secretions. A g-tube was placed for my feedings. I was off of the vent by now and breathing great. So now, it was just a time of waiting...and waiting...and waiting. My mommy saw me everyday, unless she was sick. She loved to hold and rock me...and sing to me and bathe me. The NICU nurses spoiled me rotten too...I had lots of visitors and many from ministers who prayed with me weekly.
Well, after many months of waiting and only slight growth in my esophagus, Dr. Rouse felt like we had waited long enough to see if the gap would close. It was still about 4 1/2 cm when they did my surgery on January 13, 2000, Dr. Rouse had told my parents that more than likely, they would never be able to do the primary repair...they would need to use part of the stomach, colon, or pull up my stomach to meet the esophagus...Dr. Rouse never said that a primary repair was impossible, but he REALLY led mommy and daddy to believe that it was. But, mom and dad know that NOTHING is impossible with God, so it was up to Him to work through Dr. Rouse. The morning of my surgery, my family, Dr. Rouse, and my nurse...joined hands around me to pray. It was wonderful...everyone was crying through. Dr. Rouse put his arm around mommy and reassured her that he would take good care of me. I went to surgery at 8:30. Dr. Rouse told everyone to expect a 4 to 8 hour surgery. Imagine the shock, when they said they were done at 12:30! Everyone was rejoicing because we KNEW what that meant...Dr. Rouse came to see everyone at 1:20...prayers were answered...he was able to clip a muscle on the top part of the esophagus allowing it to distend down further and the bottom part of the esophagus on the stomach showed longer than it had ever appeared on x-ray...even from the day before! WOW...mommy is convinced that God granted us a miracle that day! They put me together just like it should be...mommy hugged Dr. Rouse!
However, the next 7 days were the hardest for mommy. They had to keep me medically paralyzed so that I would be able to heal safely. I was on a vent and my face swelled over twice its size. I also developed a leak around my surgery site, so another chest tube had to be placed...then when they began my feedings, my lymph fluid began leaking into my chest cavity...it had been injured during surgery. They put me on a very special formula to help heal this.
FINALLY, on Feb. 6th, mom got to try to feed my first bottle. I only took about 3 cc's...I choked and coughed. It sure it HARD work learning how to swallow! Then on Feb. 14th, I went home from the NICU. I came home on 1/8th of a liter of oxygen when I slept and also had to be propped up to sleep. But, I was soooo happy to be home!
On the 18th, mom and dad had to take me back into the hospital for an emergency dilation of my esophagus. I was strictured (closed down) to 2 cm! Nothing could get through, well, only a drip at a time anyway! After my dilation, I refluxed my entire feeding and aspirated. So, off in an ambulance I went back to the hospital. I was very very sick and now was in the PICU. I was on a vent and just could not seem to want to be weaned from it...they did the Nissen fundo for my reflux and while they did that, they also did a bronchoscopy. They found that I had profound tracheomalacia...my trach completely collapses when I exhale. WOW...Dr. Rouse was just as surprised as my mom and dad, because I had done so well!
Finally, I could not be successfully weaned from the vent and my CO2 levels in my blood were rising, so Dr. Rouse had no choice but to do the tracheostomy. Mommy was devastated, she cried and cried for a few days following my surgery. This trach was VERY scary to her and she wondered how she could ever take care of me! But a very kind nurse took the time to teach mommy all about my trach care and suctioning...a nursing agency was found to help mommy at home too. (Even one of my NICU nurses helps take care of me one night at home).
So, I came home again on March 23, 2000. I did get a pseudomonas problem and went back into the hospital for few days...but have been doing great since! I continue to get stronger and stronger each day. I now can roll all over the place and am almost sitting up. I am the happiest boy you have ever seen...I can even make some vocal sounds which are music to mommy’s ears as she has never heard my voice before! Mommy is working on trying to feed my orally and I am making great progress with that. I lost my sucking reflex when I was intubated so much before my trach, so I can’t take bottle. So, you know what? I am going right to a sippy cup! I will even put it up to my lips and try to take a drink! I am such a big boy!
Everyone is THRILLED with the quick progress I am making. My therapists and Dr. Rouse say that I am doing wonderful. Mommy knows that getting the trach for me was the best decision...I am thriving and growing. She said that God REALLY blessed our family by placing me in it! And she knows that God has great plans for me!
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Noah with his sisters, Bethany and Chelsey
Update - October 2000: I am now crawling! I turned one on Sept 24th and started crawling about a week before that! I am working hard on trying to pull up to things, but can't seem to get the hang of it yet! I also have a PMV and I'm working on my wonderful voice!
Thank you for visiting my page...may God richly bless your family! Love, Noah Robert Kiger
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Update, January 2001
Noah is now nearly 15 months old...wow, where has the time gone? He does not say any words yet, but just to hear any sounds after not hearing anything for so much time....is music to our ears! He has a speech therapist who works with him weekly, we are teaching him some sign language and he has picked it up quickly....he knows "more", "play", "all done", "stop" and "my turn" and can shake his head for yes and no. We are hoping that within another year or so that Noah's trachea will have grown and gotten strong enough to have the tracheostomy removed. I believe Noah's pediatric surgeon will be doing some testing on that very soon so that we can see what progress he is making in that area. Noah also has made tremendous progress physically and is now walking! It is such a joy to see him so active after being in a hospital bed for 6 months! He had a physical therapist that worked with him weekly, but he has done so well, that she does not need to come anymore! YEAH! Our biggest challenge remains in getting Noah to eat orally....he has come a long way, but still has far to go. He now does not refuse food in his mouth and wants to feed himself, but just cannot get the hang of swallowing it. When you have never been able to use your swallow for many months, the process is forgotten. It is a hard, hard thing to re-learn and we were told by a feeding specialist at Riley Hospital for Children, that teaching a child how to eat is THE hardest thing a parent or therapist can do. And the fact that he has the tracheostomy makes learning to swallow even much more difficult. So, we just keep offering food and try to be very positive about it....we know one day he will be eating us out of house and home like any normal boy would do! : ) But, until then, he has his stomach tube so that we can keep him growing and maintain his weight. We are just so thankful that God blessed us with Noah in our family and it is a joy to see each milestone he overcomes!
Update 1-3-02
Hi everyone....I am now 28 months old and guess what has happened since you last heard from me? Wow, this has been quite a year of blessings for me and our family! In April, I began eating orally on my own and I have not looked back since! It is so hard for mom and dad to refuse me anything to eat as just me being able to do so after my esophageal atresia is a miracle in itself! I LOVE peanut butter and will eat it any chance I get! : ) I do occasionally get food stuck in my esophagus and I have had to go to surgery a few times to have it removed....but I am actually very good at getting it up on my own...and Pepsi has been known to help too! : ) Whatever works to keep me out of the hospital, huh??? (Shhhh, don't tell mom, but I get it stuck on purpose so that I can sneak a few drinks of Pepsi...do you think she will eventually catch on to that? I hope not!)
I also had my tracheostomy removed in June. I had GREAT difficulty at first.....struggling to breathe so much and gasping for air. Yikes....I was scared! My mommy thought that my breathing treatments of albuterol and intal were making me breath worse as about an hour after them, I REALLY struggled. My doctor told mommy that this CAN NOT happen and would not take me off of the medication. So, he sent us home.....that night I REALLY had trouble and even scared my night nurse who is a neonatal nurse practioner! She agreed with mommy and told us to go back to the hospital. We did...and they watched me and after a horrible night and me needing oxygen.....my doctor told mom and dad that he had not choice but to re-insert my trach tube and scheduled surgery. This upset mommy so much because he would NOT listen to her! She talked to the nurses and another pediatric surgeon FINALLY listened and said that she has seen this happen before. Where in kids with tracheomalacia, it can cause a reverse reaction and actually close off the trachea, instead of opening it up! YES...someone finally listened to my mom! So, she told my surgeon that we were not going to allow him to put the trach back in until we TRIED to see what happened after they stopped the breathing medications. He was not happy, but he loves me and respects my mommy....so he said okay, we will give it one more day! Guess what.....mommy was right! : ) And I have been doing great since......
I also had my stomach tube removed in September. At that time, they re-cut my trach site as it did not close totally and had to cut me a bit larger at my g-tube site to re-stitch it better. My trach site looks awesome, but my stomach did not heal so well and I have quite a large nasty scar...but oh well.....these are my "rewards from battle" and I am proud of them! : )
Since my trach was removed, I have been working VERY VERY hard on speech. I am making very slow, but steady progress. WOW...this sure is hard work! But, just this week, I have learned to call my "mom" and "dad" by name! This makes them nearly cry each time I say it! I also can say: dog, eat, drink, hot, duck, water, cheese, papaw, mamaw, yuck, up, and down. Not all of them come out too clearly yet, but I am trying! And I have learned to say all of these things just in one month! WOW.....I also try to say anything that anyone asks me too......again, not always can I say it....but I TRY HARD! Mom and Dad are just so proud of me and know that we are truly blessed by all of the progress I have made! Thank you for visiting my page and if we can pray for you in any way, please email us! God bless you! Love, Noah
Update 10-4-02
Well, I am now 3 years old! YIPPEE! I have been doing very well since my last update except I was very sick last fall, winter, and part of spring. I did better in the summer though........I just had to go one time this summer in July to have food removed from my esophagus and have it dilated. While mom was out of the room, my sister gave me a whole hot dog to eat---and well, I was so hungry I just took a big bite and forgot to chew! I also got pneumonia from the surgery and was REALLY sick, but they got me better with IV antibiotics really fast! I really do quite well with eating when I have small bites and chew my food! I will do better with this as I get older, but for now, mom & dad have to watch me closely all of the time! : )
I am still taking speech therapy and have made great progress. I say lots of words now and can put about 3-4 words together at a time when I want to. My articulation is very good, but I struggle with the language part. But, mom and dad are just so happy to hear me talk! :)
I went to see my pulmonologist this week because I have been battling pneumonia off and on for about 5 weeks. I get better and then worse again-----I am on my second round of antibiotics since the first part of September......my doctor is going to do a bronchoscopy (scope of my trachea) on the 15th. He is afraid I might be aspirating my food. Mom does not think so as I did just fine in the summer---but we will see. He also wants to see what my tracheomalacia looks like and he also thinks I may have asthma. So, I have to do nebulizer treatments each day. But, he wants too look in there to see how we need to proceed with my treatment to help keep me well!
I have only gained 1 pound in nearly 2 years, so I need to be able to gain some weight so I can stay well. But, I am also VERY active too! : )
I love tractors and my cowboy boots......and love to help Daddy work around the house. He needs LOTS of help with our remodeling project, so I lend a hand when I can! : ) I can name all of the tools....so I am a big help in giving Dad something!
Well, thank you for visiting and I pray all is well with your family! God bless you!
Love, Noah
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Update 11-23-03: Well, it has sure been a long time since mom sent an update, hasn't it? Guess my sisters and I have been keeping her awfully busy! I am now 4 and am doing great! I am eating well and have not needed any esophageal dilations in over a year! YIPPEE! I do occasionally get food lodged in my esophagus, but mom and dad have found that Pepsi (or another carbonated drink) has worked wonders in helping to get the food back up or down. They really think me and some other EA/TEF kids need to do a commercial for them! Who knew Pepsi had medicinal purposes too? I really just think it tastes great----but don't tell mom and dad!
I am in the developmental pre-school through our school system and go 5 days a week in the mornings. I LOVE it and am doing great with speech therapy! My speech therapist cannot believe the progress I have made-----but mom & dad believe it because I talk NON-STOP!
I also have been staying MUCH healthier-----I had aspiration pneumonia a couple of months ago, but only had to miss one week of school. My tracheomalacia is still very present and I really get quite winded if I get too active, but overall we can still see more and more improvement as I get older.
I LOVE anything "cowboy" and my favorite thing to do is play my guitar and sing songs I make up for my family! They think I may have a future career as a song writer------but really I just want to be a calf roper in the rodeo. I would really love to ride bulls, but mom says NO WAY! I made up quite a song about that ------
Thank you for seeing my page-----may God richly bless you! Love, Noah
Update 9-24-04: IT'S MY BIRTHDAY! It is so hard to believe I am five, isn't it mom and dad? Wow---where did the time go?
I am in the developmental pre-school again this year and I just love it. I still receive speech therapy but mostly just for some certain sounds and also because I do not always have enough breath support when I try to talk a lot. Physically, I am doing just excellent! I have stayed pretty healthy and hope I can fight off those nasty pre-school germs this fall/winter. I am doing well with eating and eat everything I can get my hands on. (well, almost) In March, I got a grape lodged in my esophagus and off we went to the hospital. But, between the time they did my x-ray showing the grape lodged and then went in for surgery---the grape had already passed. Mom said that sure was one expensive grape! : ) But, I have not had any food lodged since then. I also have not needed an esophageal dilation in nearly 2 1/2 years! WOW---that is amazing! Mom thinks it truly is because my Nissen fundo has worked so great for me. What a blessing!
I still believe I was born to be a cowboy. A day does not go by that I do not wear my boots or Wranglers. Mom and Dad go me a plastic calf head for my birthday so I can practice my roping skills. It sure is harder than it looks in the rodeo, but I will keep practicing! One day, I want to do it for REAL-----of course, since mom still won't let me ride bulls! Not sure I can talk her into that one or not!
Thanks for visiting my page and I hope all is well with you and your family! Love, Noah
Update, March, 2006
Hi everyone! I am
now 6 1/2 and I am in Kindergarten. My mom and dad can hardly believe it! I am
doing very well in school and love being with my friends. I talk
non-stop-----and I am still a cowboy! My mom says I am "all boy" which means I
like to play and have fun, I guess! I am doing very well and have not needed to
see my surgeon for over a year and a half. WOW! I do get food stuck sometimes,
but Pepsi sure works great to help me get it back up or down. Thankfully this
has not happened at school yet, but mom did tell them that it might. My teacher
said she is pretty scared about this, but I told her it would be okay! In the
past couple of months, I have woke up twice struggling to breathe. Mom and Dad
thought I might need to go to the hospital, but were able to get me through it
with breathing treatments. We are not sure what caused that, but hopefully it
won't happen again cuz it sure scared me! (and mom too!) I still cannot run much
or I get very winded. Mom said I may never play sports that I need to run a lot
in, But that is okay, because I can still be a cowboy! Thanks for stopping by!
Love, Noah
Email: kiger5@tds.net (Jeff & Michelle
Kiger)
