Kuyler’s ENT Apt.

Before I talk about the appointment, let me say that little Kuyler slept all night with no alarms and not wanting to eat. I was shocked and happy too!!! He was so hungry; I thought we would never get him to break loose from his bottle so that Rodger could burp him. He is a little piggy!

Well, I suspected that the ENT would put Kuyler back on the antibiotics (Zithromax) and the steroids (Prednisone) due to the fluid still being in that one ear. He got the results from the hearing test and said that his hearing is great and that we are hopeful that speech development will be right on schedule. We have to go back in a month for a check up and hopefully no more meds. At least this time, I remembered to have Rodger get the pharmacy to have the steroids (Prednisone) flavored so that he will take it better. The antibiotics taste like bubble gum and he takes it pretty good already. I just dread Kuyler being so hyperactive. Oh, well….thanks for listening to me ramble.

Cendy

Kuyler

The apnea monitor has gone off a couple more times since "the night that scared me half to death", so I called the Apria Medical Supply support line yesterday. And the respitory therapist told me that, yes, sometimes the apnea alarm can go off as a false alarm and as long as my baby is not turning blue and he is responsive, more than likely it is a true false alarm. Hearing this, made me more relieved that Kuyler is just tripping the alarm somehow. She even said that baby monitors and microwaves could trip it. The only way to tell if it is for sure is to come in and have the data from the machine downloaded. This information is then interpreted and the report is sent to all of his doctors. We will be taking the machine in soon for them to do this. I will let you know if these alarms were the real deal or not as soon as we get the reports from the doctor.

Kuyler has a follow-up appointment with his ENT today at noon. I am hopeful that Kuyler will not have to take any more meds because those steroids really wire him up, but since the audiologist said that Kuyler still had fluid in his left ear, he may have to be on more meds.

In the midst of all this breathing drama, Kuyler is laughing and smiling. I can actually tickle him now and get a response. I will have to record it and put a video on the blog as soon as I have a moment to do so. It is so funny!!!!
Cendy

Always remember that life can change in a split second…

Both Dathan and Ashton were snug in their beds watching cartoons, Wyatt was spending time with Nana in her room, Rodger was in Athens hanging out with some friends, and I and little Kuyler just finished watching Tinkerbelle when I had the experience that many families have, but do not have a happy outcome....

Kuyler quit breathing!!!!

Relaxing on my bed, Kuyler had fallen asleep in my arms after intensely watching the beautiful colors of the fairy animations. Needing to get Wyatt to bed, I got up with Kuyler, laid him in his bassinet, plugged in his lead wires into the apnea monitor, turned the machine on and headed to get Wyatt ready for bed.

I got to the fridge, took out the milk and I started to hear beep, beep, beep, beep!!! If it is the lead wire or some kind of connection problem, the machine just has a long loud beep, so my heart sank into my chest hearing separate beeps. The beeps could mean one of three things, 1) his heart rate could have dropped to under 70 beats per minute 2) his heart rate has gone over 230 beats per minute or 3) he has stopped breathing for over 20 seconds, so I ran as fast as I could to my room.

I got to his bassinet and looked quickly over to the machine thinking this could not be happening, but there is was the red light with the big X over the lung diagram beeping. My precious baby boy had stopped breathing!

I started to panic, but I remembered the woman who trained us on the apnea machine had told us not to pay attention to the alarm and focus on the baby. I quickly, put my hand on Kuyler’s chest and began to shake him. It took a few seconds, that seemed like a lifetime...but he started breathing and opened his eyes.

Oh, I was so scared that he would not wake up and I would have to do CPR. It is weird, but the past few days, I have been going over the CPR steps in my head, and I almost had to use them tonight.

This is the first time Kuyler made the alarm trip for real. The false alarms have gone off, but no real ones that say, "I am not breathing, my heart is beating to fast or too slow". This was the real deal. I just do not know how I could have handled losing my baby if by God’s grace; he had not started to breath again.

So, Lord from the inner depths of my heart and soul... thank you for watching over my son and cradling him in your arms....

Cendy

Kuyler Update

Oh, my goodness...where do I start. Last Friday, Kuyler had his CT scan and over the weekend, our entire family got the stomach flu. Being out sick from work on Monday, I called Kuyler's ENT to get the results of the CT scan. The ENT told me that Kuyler had some thickening, fluid behind his ears, and some development issues so he put Kuyler on antibiotics and steroids.

That night, I was up with Kuyler who I noticed was actually stopping breathing for a few seconds while he slept and then kind of coughing to take a breath. So I watched him sleep and I noticed that his trachea was sucking in like a sink hole when he breathed in. This scared me to death. Needless to say, I did not sleep.

When I went to work that morning, I called the ENT and told him what was going on. He told me that this was definitely a sign of the tracheamalasia and that I needed to get Kuyler to TC Thompson's Children's Hospital to have him checked out, because he did not want Kuyler or me to go through another night like the previous one.

Around noon, I got off work and we headed to Chattanooga. The ER doctor checked him head to toe agreed that he has the condition and called our pediatrician to discuss what was going on with Kuyler. The ER doctor told us to go see our pediatrician first thing the next morning so that she could check him and refer Kuyler to a pulmonologist.

Well, Rodger got the stomach flu and I took Kuyler to the doctor. She checked Kuyler and she admitted Kuyler to Skyridge Hospital to have Kuyler's breathing monitored overnight with an Apnea monitor. This monitor alarms when Kuyler stops breathing for more than 20 seconds or his heart rate goes over 230/under 70 beats per minute. It was really hard to be all alone at the hospital with a sick child. I got through it though.

The next day, our pediatrician would not discharge Kuyler until we had an Apnea machine to take home with us. We also had to take a Infant CPR class as well. My mom had to come to the class as well before we could leave with Kuyler. When we went home and it was not easy to get used to putting on the monitor, but I could sleep better knowing that if he quit breathing, an alarm would wake me. I have not slept soundly since he was born and knowing that he is really having trouble breathing, it is no wonder Kuyler has not been able to sleep through the night.

Kuyler finally passed his hearing test at TC Thompson's Children's Hospital Therapy Center. The audiologist said that Kuyler did still have fluid behind his left ear, but it was the clear kind, so the hearing test was done without any problems. We were worried that the fluid would interfere with the test, but since it was not the thick cloudy kind, the sounds were able to bounce off his eardrum easily. He has perfect hearing!!!!! More than likely he will need more antibiotics or even tubes in his ears, but as long as he can hear, that is fine with me.

The next step is to see the pulmonary specialist Feb 9 at TC Thompson's Children's Hospital. Please keep praying for my little guy. God is Good!!!!

This is the hospital's apnea machine. Ours it kind of different and I will post it as soon as I can get a picture of it.

I found a great website http://www.webmd.com/parenting/your-newborn-babys-breathing-noises for the breathing condition that Kuyler might have. The condition is called tracheomalacia and, according to this site, this condition happens when "the tissues of the trachea are soft and flexible and make noise when the infant breathes in and out". Depending on the severity of tracheomalacia, I think Kuyler could grow out of it. I will let you all know what the CT not CAT scan shows as soon as I have the results back.

Cendy

Kuyler Update

The hearing specialist wants Kuyler to have three tests done at TC Thompson's Children's Hospital, an MRI, CAT scan and a hearing test. As of 5:00 yesterday, the nurse called and the CAT scan is scheduled for this Friday at 2:00. I am hoping that the other two tests can be done that day too, and I should know today if they were able to get it scheduled.

In addition to the hearing issues, now there is breathing issues. Kuyler has not slept through the night since he has been born and he wakes like every 1-2 hours. He is having trouble breathing. He makes so much noise when he sleeps that I do not sleep for checking on him. I have him sleeping at a 45-degree angle and he still grunts and makes noises.

Well at the doctor's visit, Kuyler was sitting up making these same noises so he checked his ears, noise and mouth to see if he was congested, but he was not. So, the doctor thinks that there is a small chance that the flap in his nasal cavity that should have dissolved by now has not and it is causing him to have difficulty breathing.

I am scared out of my mind thinking that he is going to stop breathing at any moment! Now that I know the breathing noises he is making are not just normal baby noises, I feel bad for getting frustrated about losing so much sleep at night, when all along my little guy has been struggling to breathe.

Please think of Kuyler when you pray and ask Him to heal my little guy.

Cendy

Today is 3 months old and we have an appointment with the hearing specialist. I am praying that my baby can hear me clearly and nothing is wrong with him. Please think of us and our little one this afternoon. We need all the prayers and blessings we can get today. I will update the blog as soon as I can today.

Cendy

Caution: Cute Wyatt Ahead

A.K.A Little Superman !Join us next for another superhero...I believe we have also spotted Batman lingering around the house!

Look who was Naughty, oh, I mean Nice!

DNA on the glass and cookie confirm...

Santa's Arrival!!!!

Silly Christmas Eve pictures!

Christmas Eve

Making cookies for Santa!!!

Jayla looks like a little angel in this picture!

Can you see her Halo?

Kuyler had vision of sugarplum fairies dancing in his head while the cookies were being made. He had to sit this one out, but not next year!