Colton's Tubes

We woke Colton up bright and early on Tues morning to head to Primary Children's for what we consider a major step towards his implants. Colton needs to have tubes put in his ears. He had tubes placed last year, but over the year, has lost one and plugged up the other and has had issues with fluid in both ears. There can be no fluid in his ears at the time of surgery because of the risk of infection. So we took him down for his same day surgery.

Colton didn't love the pre-surgery exam. They checked his oxygen levels, took his blood pressure and his temperature. He was a little grumpy and clung to daddy a bit.
But when we moved to the waiting area, Colton quickly found things that didn't make him grumpy. He was all over that room. We waited for the surgeon and the anaesthesiologist to come talk to us. Then they took him in a wagon down to the OR.

We were very happy to have the surgery be so quick. They didn't even start an IV. They put him out with gas and he woke up very quickly and pretty happy. He drank his juice and wanted to get down and walk around. They did give him a narcotic in the OR, so we had to wait to be sure the did fine and didn't have any respiratory problems. And when he walked, he was a little bit wobbly from the drugs, but he did so great. This is by far the best experience that we have had in that recovery room. And we have had a few. Lets hope the next one goes well.

Here Colton was trying to put his ear drops in his ears all by himself. I just thought it was cute.

The Auction!

My dad told me that for there to be givers, there has to be receivers. I get this concept. Many times, I have been the giver. I think many people think of themselves as the givers. It is a very humbling thing to be the receiver.

There are no words to express the magnitude of what happened today. Our neighborhood got together for our annual party. A group of friends held a silent auction with all proceeds going to Colton's surgery. They have asked for donations for the auction. I can't really say what I expected to see. I knew of many things that were being donated. But to see the tables full of items donated by our friends, neighbors, family, family of friends and neighbors, and people I didn't even know was overwhelming. It brought me to tears. I am surrounded by many, many givers. And I don't know how to thank you enough for your support, prayers, and generosity.

Colton Goes Cochlear

Welcome to Colton goes Cochlear. You can learn more about Colton's journey by clicking on the links on the side of the page under Colton's Story. If you want some information about Cochlear Implants and being deaf, you can find that too. We appreciate you learning more about our story and we hope that you can help us give Colton the chance that he deserves to have sound and language in his life.

The Decision

Colton is fitted with hearing aids and we get them on September 2. Within minutes of getting them on, I called his name and he immediately turned to me. That was a tender moment. Over the next 6 months we watch him to see if he gets any benefit from them. When we can get him to keep them in his ears. It is a constant game that he plays. He pulls them out, we put them in, he pulls them out again. We are continuing physical therapy and we get him moving. Then it is even more fun because he pulls them out and then crawls away.

Colton's zebra striped hearing aids.

By January 2011 he is wearing them every waking moment and will actually leave them in most of the time. We don't see much benefit from them. On good hearing days he seems to respond to loud noises, like clapping and the boys running through the house. But he isn't trying to talk, or imitate sounds.

We start learning sign language. At first the other boys love it. They think it is pretty cool to learn a new language. After a while, they get bored and don’t care. Colton is just a baby who doesn’t talk. They don’t understand why we need to sign to him. They don’t care so much about it anymore. It adds a new stress trying to find the balance between Colton and his needs and the other boys.

Deciding to do cochlear implants is not an easy decision. Everyday we go back and forth. The idea of putting my still very small baby through yet another surgery just makes me sick to my stomach. We can learn sign language and he can still live a full life. But he has brothers. I don’t want him to feel left out. I don’t want him to be at family gatherings and not be able to talk to anyone. There is a chance of them not working for Colton because of the Auditory Neuropathy. Do we want to put him through a major surgery and have it not work? I wouldn’t wish this decision on anyone.

We talk to people. We meet many wonderful kids, with and without implants. We visit the deaf school and there is such a special feeling there. We see the implant working for many. We decide we want it all for Colton. We need to try everything that we can for him. So we will do the implants and continue to sign with Colton. It is the first time we get a sense of peace about the whole thing. We have made the decision.

Learning about implants and signing has been overwhelming. We have to accept that our whole life will change. Our whole life style. Colton will need therapy for years to help him learn how to listen with the implant. It may not work for him very well, or he might take off. We don’t know. He will start going to school at age 3. Learning sign language is hard. The boys pick it up faster than we do, when they want to. We are getting better and we are anxiously awaiting for Colton to start signing back to us. Everyday we pray that we have made the right decision for Colton and that things will fall into place. At this time, we are again in a waiting game. We hope that Colton will be healthy enough for his surgery and that the implant will work for him. We are trying to find the balance between his needs and our families needs. And we continue to celebrate the small victories.

Colton on his 2nd birthday. It is the day that he finally decided that he could walk!

Waiting to see the audiologist. We used the hat to help Colton keep his hearing aids on.

Discovering that Colton is Deaf

No brother will ever be loved as much as Colton is loved by his brothers. They never did get to visit him again in the NICU. We bring him home and they get to see him and hold him. It is a tough transition at home, but we survive. Colton is on oxygen and so we don’t go very far. The therapists start coming to visit and help with what they can. Colton never passed his newborn hearing screen, but that isn't unusual for a premature baby, so we don't worry about it much. The therapists all ring bells and try to get his attention and they notice he doesn't respond, but again, not unusual for a baby. Colton was only 3 lbs 15 oz when we brought him home from the NICU. He is so little and is pretty far behind on his development so we try not to stress out too much. We do have to go back to try his newborn hearing screen again. 6 hours later we come home with him still not passing, but no more info than that. I am overwhelmed. Colton is on 6 medications, RSV season is starting and Colton is a very hard baby. I don't really believe that Colton has a hearing loss. We decide that we will deal with the medical issues and worry about his hearing later.

Spring time 2010, Colton is 1. He is off all the medications. Still on oxygen, but we are used to it. It doesn’t intimidate us much. We try for our first hearing test. An ABR (Auditory Brainstem Response) is a test where electrodes are positioned on the head, and they record electrical activity in the nerve for hearing, and in the brain, in response to sounds. This test is capable of determining complications in the inner ear, the auditory nerve and the hearing center of the brain.We are unable to do the test because Colton has fluid in his ears. We try several rounds of antibiotics but they don’t help. So the ENT decides he needs tubes.

Almost exactly 1 year to the day from his heart surgery, we are sitting in the same waiting room while our son is in surgery for ear tubes. Since he is under anesthesia, they also do an ABR at the same time. We are told that Colton has a hearing loss that is moderate-severe. We go home feeling that we can handle this. Then we get the official report in the mail a few weeks later. It says that Colton has a profound hearing loss. We are shocked. This is so different than what we were told.

Colton also has booth tests. This is where we are in a booth and we have Colton on our lap. They pipe a sound in on one side of the other, then they will have a visual stimulus like a bear that lights up. The idea is to do the sound first, then the visual and see if they will start to look for the visual after hearing the sound. Our booth tests don't go well and the audiologist agrees that Colton has a profound hearing loss.

We have an MRI so we can see if the middle ear is formed correctly and since he will be sedated, they order another ABR. This is when we are told about the Auditory Neuropathy.
div>

Auditory Neuropathy in a nutshell is when there is some problem with some synchronization in the ear. Kind of like a faulty speaker wire, the sound will come and go. The ear works, it just can’t send the message to the brain. Some kids, when the sound comes in (we call them good hearing days) can hear pretty well. Colton does not, even on a good hearing day. He is profoundly deaf and the Auditory Neuropathy adds a little bit of a complication. It means that things might not work they same as they do for others.

I think I am still in denial. I don’ t want to admit that my son is deaf. I wake up in the morning thinking that somehow, things will be different today. My son will be able to hear my voice. I think that it really hit me one day when I was doing some house cleaning and I had some music on. I suddenly realized that my son couldn’t hear. Would never hear. All those times I had rocked him and sung to him, he couldn’t hear me. When I whispered to him that everything would be okay, that he was a fighter, that I loved him, he couldn’t hear me. My son is deaf.

Heart Surgery

Colton will have surgery on July 14. It has been almost exactly 2 months since he was born. The surgeon decided that 1180 grams is close enough. Those few extra grams didn’t matter to him. He comes to tell us about the surgery and what they are going to do. We already know. We have been through this surgery once before with our oldest child. Only he wasn’t premature. What they will do is make the incision in his back. They go between the ribs, deflate the lung and move it out of the way so they can get to the aorta. They need to cut out the part of the aorta that has the muscle tissue in it that is causing it to narrow. They will also cut out the PDA valve that is being kept open and close the whole thing off. We ask the surgeon if he has ever performed this surgery on a baby this small before and he tells us no. In a strange way, that makes me feel a little better. Like he will try even harder to make it successful because it is his first.

Colton’s brothers have never met him. It is the year of the swine flu and the NICU is on lockdown. No siblings. I can’t send my baby into heart surgery without his brothers getting a chance to meet him in person. Our nurse helps us arrange to have them meet us in the hall on the way down to the OR. They finally get to meet the reason that mom and dad are gone all the time. We have our first family picture. Then we pass our baby to the surgeon and it is time to wait.
Our very first family picture. July 14, 2009

The surgery takes a long time. It takes almost 2 hours just to put all the lines in place because he is so darn small. But it was a success. I was prepared for what Colton would look like after surgery because of our experience with our older son, but it is still hard. But the surgery is a turning point for Colton. With his heart fixed we can feed him more. And within days we go from 8 pumps to zero. Colton is officially just a feeder/grower. He just needs to learn how to eat, and then grow.

This is the piece of aorta that they cut out. The surgeon brought it out to show us.

Colton after heart surgery.

The hospital staff helps us get transferred back to the hospital where he was born. It is closer to home and has a smaller NICU. We spend the last month of our NICU stay there. We finally get to experience the things that we have watched others experience. Colton moves to a crib. He moves from a high flow oxygen to a regular oxygen tube. He is gaining weight very slowly, but that is normal for him. He is eating from a bottle and nursing. No more feeding tube in his nose! We celebrate 100 days there with a cake and a little party. Colton tried some frosting, but didn’t like it much. Finally on day 108, we get to go home.

Our 100 day celebration cake.

Finally we are home as a family. August 31, 2009

NICU Days

The first few weeks in the NICU (Neonatal Intensive Care Unit) are called the honeymoon period. Things go pretty well and stay stable, then the hard stuff hits.

It was a Sunday evening when we our honeymoon ended. We brought our oldest nephew in to see Colton and I was watching his monitor and noticed his sats going down. I called the nurse over and she tried a few things, but he didn’t look right. Soon the beeping started and they pulled out the bag. Another nurse came over, than another. I watched in shock as they bagged my son and tried to get him to breathe. They ushered us out of the room and we were able to watch through the glass. There is no word that can describe the feeling of watching them trying to resuscitate my son. They pulled out the ventilator tube and it was clogged. They put a new one down and he started to stabilize. We left the hospital with the assurance that it was a machine problem, not a baby problem.

But later that night it happened again. At 2 AM I called and spoke to the doctor and she told me that he was very sick. That he had an infection and he kept clogging up the tube with mucus and other gross stuff. He was being treated and was stable, but she again told me, “He is very sick.”

I prayed all night long that he would survive for me to see him again. I again told him that he was a fighter and he could do this. He remained stable, but during a heart echo they found a problem. His aorta was narrowing when they tried to close his PDA valve. It is a condition called Aortic Coarchtation. The PDA is open when the baby is in utero. It closes naturally when babies are born. When babies are born prematurely, sometimes the PDA doesn't close on its own. A lot of babies have to have it surgically closed. They tried some medicine to close Coltons, and it was working. But some of the muscle tissue had grown up into the aorta. So as the PDA closed, it started to close off the aorta as well. They quickly reversed the closure and gave him medicine to keep it open and Colton got his first car ride and we were transferred to Primary Children’s Hospital. Colton was going to need heart surgery.
Colton was not even 2 pounds and was only 2 weeks old. He is way too little to survive heart surgery.

We are playing a waiting game. It is all about finding a balance. Feeding him just enough to keep him growing, but with his PDA being kept open constantly, we never know how much blood is going to his gut and the risk of an infection in his intestines is too great to feed him too much.

Time passes slowly. The hospital has its own time warp and the time there goes too quickly. We are splitting our time between Colton and our 3 other boys at home. Always trying to find time to be at the NICU and understand what is going on with Colton. He is finally taken off the vent and we are excited to see his face. He is still so small and is growing slowly. Everything that they do to keep him alive has a negative side affect. So we are treating him for those as they come up. Every week the cardiologists meet to discuss Colton and every week we are told they want him bigger. At least 1200 grams (which is just over 2 lbs). Every night they weigh him and our whole life seems based on those numbers. Up and down they go. Waiting.

Colton being transferred down to Primary Children's Hospital.
The first time we got to hold Colton. It was June 1, 2009.

June 11, 2009. They took Colton off of the ventilator and moved it to a high flow oxygen. The tube in his mouth is his feeding tube.

June 18, 2006. Just over 1 month old.

Cuddled up with mom for some Kangaroo Care.

Colton's Birth

During the 6 weeks of bed rest before Colton was born, I would have a lot of talks with him. I told him that he was a fighter. That the doctors who told us each week to prepare ourselves because he wasn’t going to survive were wrong. He would give me a little kick here, and a nudge there just to let me know that he was still okay.

The first time someone told us he had a chance of survival was a week before he was born. It was all going to depend on his size, they told us. Technology only allows so much. I was diagnosed with IUGR at 12 weeks of pregnancy. IUGR(Inter Uterine Growth Restriction) means that for reasons unknown, the baby doesn’t grow properly. We knew from an early ultrasound that Colton's growth started slowing down and his growth was behind about 4 weeks. As each week passed and he was measured, his growth continued to slow. I was put on bed rest to help keep my blood pressure down and give him the best blood flow possible.

When they finally admitted me in the hospital at 29 weeks, I was relieved. I knew it would be harder on my family with me gone, but after weeks of being told to prepare myself that he was going to die, it was nice to be in a place where I knew they could actually try to save my baby. I was able to get the steroid shots to help mature his lungs. After only 4 days in the hospital, they needed to take Colton by emergency c-section because my blood pressure was too high. He was born on May 15, 2009 at 29 weeks 6 days gestation. He weighed 1 lb 3 oz. (556 grams) and was 11 inches long. At 29 weeks he is the size of a 24 week baby. They held him up over the curtain to give me a peek and then they rushed him off. The NICU team yelled in the room with excitement that they were able to use the 2.5 ventilation tube instead of the 2.0 which is the smallest available. It seems a silly thing to be excited about, but we knew that if the tube didn’t fit because he was too small, there would be no chance at survival.

It wasn’t until the next day when I was able to see him. His size was a shock. He was so much smaller than I remembered at delivery. It was heartbreaking to see him crying, but hear no sound because of the ventilation tube in his throat. He had no fat. His skin was so thin we could almost see through it. And one of his eyes was still fused shut. I couldn’t believe that I had done this to my child. Why couldn’t I keep him inside longer, where he was safe and pain free. The guilt a mother feels when looking at her micro preemie is overwhelming. I tried to not blame myself, but it isn't easy to make a convincing argument when I am watching my baby fight for survival. However, I am grateful for the technology that allows us to save these precious babies. Without it, Colton wouldn't be here.