Bailey Caruthers

 

It was August 8,1997 when our lives changed. I was in labor with our third child, I had a 4 and 5 year old in the waiting room with family and friends all the plans of having a baby, and be home in a couple of days where about to change. I gave birth to a beautiful baby girl.  Immediately I knew something was wrong. "Why isn't she crying?" "What's wrong with her?" I said. The midwife laid her on top of me I held her while they tried to clean out her mouth and nose. Still no Sound. She was visibly crying and no sound was coming out, her chest was sinking in with each gasp for air, and I screamed "Oh God something's wrong!" They took her to the nursery, I don't know how much time lapsed, my husband went to tell the family and they all gathered at the nursery window to see a beautiful baby.  The nurses called our pediatrician Iris Snider and closed to nursery blinds, Everyone wondered why? When the doctor got there she went to the waiting room looking for my husband, he was back in the room with me at that time.  As soon as she walked in the door I knew it was going to be bad news, "The baby's alright 7lbs 1oz 21inchs, but I can't figure out what's wrong and I'd feel better sending her to Knoxville Children's Hospital".  I felt my heart break for our little baby and the pain and worry in my husbands teary eyes, he nodded at me to say it's gonna be alright. The children's transport unit was in route. All I started saying was "call the preacher, please call him," I figured immediate prayers would help. My father came to the room and when our eyes met we both started crying, My father-in-law came to the room and said the preacher was there. Once he got to the delivery room we all prayed and prayed hard. 

I finally got moved to my room. Once the transport unit got there they brought Bailey to me all bundled up.  The nurse handed her to me she was perfect calm, pink color she was awake and looking around. I held her so close and smelled her baby smell, tears fell. My room was full of people family, friends, nurses, and doctors and our preacher had one more prayer and the neonatologist said we have to go. They showed me the incubator/transport unit she'd be placed in, I handed her to her daddy he gave her over to them. I said to my husband "Kevin, go stay with her follow them up there." Bailey was on her way. 

Little by little everyone said their goodbyes and I found myself alone. I asked God why? What have I done? My preacher had said to me, "God didn't do this to your baby, but he's going to help you through it and she's gonna be fine." That night my mother-in-law stayed the night with me. I had taken a sleeping pill, but the 3:00am feedings the maternity wing was awake, babies where crying for their mommies. I remember hearing them and I raised up in bed. Then It hit me, my baby's not here, I felt so empty. 

The next morning my OB GYN came to my room and asked me if I felt like going to my baby, and I started to get ready. Bailey was born on Friday the ENT doctor saw her on Monday Bailey's stats stayed up she had a little sleep apnea all weekend. Dr. Joe Graves came out in the waiting room and told us what he was gonna do and in case of the worse case he would have to do a tracheostomy I didn't have any idea what that was. I couldn't imagine her breathing through her neck and he would have to cut her to do it. Newborns don't have much of a neck. Minutes passed and he came back out, "Well I have to do a tracheostomy."  He explained that her airway was severely stenosed at her vocal cords and below. I was devastated, so many things went through my mind. He said her airway was 98% shut and he compared it to the end of a ballpoint pen in size. Dr. Graves looked me straight in the eyes and said, "Just know that you didn't cause this to happen, nothing you did during your pregnancy caused this." He promised, "I'm totally committed to your daughter from this point," he reassured me.  And I knew he would do all he could to help fix her. 

On our way back to the NICU the OR doors opened and it was Bailey she was on her way down, so we road on the elevator with her. Dr. Graves tried to prepare us for what she was gonna look like, nothing prepared me to see that. I could feel myself start to shake as I stared down at this little baby in a isolation incubator with wires and tubes, the machine was breathing for her, lights, beeps and so much connected to her neck.  She was trembling with her eyes closed. I later found out she was coming out of the anesthetic. The elevator ride was one floor, but it seemed like for ever. Once I got off the elevator I fell apart and cried out "why?  She's so little, she doesn't deserve this." All of a sudden a calm came over me like a warm blanket.  And I knew in my heart that I wasn't alone and everything was gonna be alright.  

Bailey stayed at Children's Hospital in Knoxville, TN for one month exactly. During her stay she was well taken care of. We were well trained in all the equipment needed for her.  Dr. Graves had tried to laser her during her stay, her vocal cords stayed separated from that.  But, the tissue below grew back.

Over the past 2 years we've ended up at the hospital for upper respiratory viruses; infections. We were so cautious about staying clean and no visitors through cold and flu season. It seemed like every time we took her out she got sick and with two other kids in public schools they brought home a few things. Over the past 2 years, Dr Graves has checked her airway numerous times and in the past 6 months he started making plans for reconstructive surgery doing a rib graph. We prayed and was amazed from the support from the town we lived in Athens TN. 

July 7th was the day set for surgery. We got to the hospital at 5:00am. When we parked the car I started to cry, so scared, but so happy. It's been two years and we've never heard our baby's voice and the time was getting closer. She was in surgery for 7 1/2 hours. And the doctor put a stent in her airway to hold everything open and left her trach in. She stayed in the PICU for 7-8 days and came home then got real sick and had to go back that same week with a bad stomach virus, so we got put on the contagious floor for 3 days. She still had some vomiting due to the stent in her throat.  She had the stent for 32 days. Once it was out her coughs started sounding more normal. She had been checked once a week after the stent was out, watching progress and backsliding a little. But so far so good. I finally started hearing her voice when I'd cover her trach when she'd laugh or cry. Her brother and sister will play a yelling game with her and she copies them and will yell with a whispery voice.

The biggest question I get is "How do you know what she needs," and "How can you hear her at night?"  Bailey developed her own way of communicating through gestures and facial expressions.  She is Miss Personality!  And I wouldn't trade our situation for any.  We've had our scares and ups and downs.   We find the strength thanks to the good Lord above and there is a God!  I've been told that God chooses special people to take care of children with special needs. And their spirits are fine, the body is only temporary. 

And how can we thank a doctor for doing what he's done, a thank you seems to be so small in comparison.  His knowledge and his hands have given her a chance for a more normal life, an airway, a voice to speak with.  Bailey just recently said her first word thanks to her brother working with her on it (Bubba).  It's a horse sounding whispery voice, but it is beautiful.  She's began to babble like a baby that has just started out and now she has.  

May God bless all those who do good for children's lives.  I'd like to dedicate Bailey's section to Dr. Joe Graves Ped ENT With Children's Hospital in Knoxville TN. and to Dr. Little and the special heaven sent nurses and staff of Children's Hospital and a special pediatrician who knew who to send our baby to Dr. Iris Snider at Athens Pediatrics in Athens TN.  

It's Oct 1st 1999, and Bailey has the smallest size trach in that they make she's doing OK.  When we go back the 13th if she does well with it capped, he'll take out her trach.  Many Blessings to all of you out there.

  • Update October 1999: 

Its Oct.15th and we just got home. Bailey has her trach out. Dr. Graves did a laryngoscopy and didn't dilate anything, after she woke up out of her anesthetic and got active Dr. Graves had us put on the cap Bailey keeps a close eye on him! So, while she was watching him my husband put it on and she went on like she didn't even know it was there. When she laid down for her nap she had mild retraction the nurses called the doctor her stats stayed perfect, but it was that pulling in her lungs that worried me. But it must have been something her body had to go through to realize she didn't have a hole in her neck it just wasn't as easy as before. She got a breathing treatment and she did fine the rest of that night. The next morning we saw Dr. Graves and I held her in my lap and he walked up beside her and snipped her trach tie I could feel my heart pounding! He put a piece of gauze and taped it on over her stoma Bailey was crying she didn't know what we were doing! She cried like she does when another kid takes away one of her toys. She knew she was supposed to have something there her trach was gone! I cried a little, I think I spent most of that time praying silently and watching her breath. Later that day Doctor Graves came by her hospital room we were walking down the hall and Bailey looked and him and pointed at where her trach use to be and shook her head no as if to tell him it was gone. She just jabbered and yelled up and down the hallways. We didn't get much sleep at the hospital I constantly would wake up to check all the monitors to see what numbers they were showing she did real well she had to have a breathing treatment that night. She had just ran and ran all day, and Friday afternoon they let us come home. She'll be on a apnea monitor for a while at night until her hole is closed up its still open a little but we figured its like having your ears pierced it takes a while for the holes to close and she's had this one for 2 years. Bailey has to get a flu shot I guess we all will because a cold wouldn't be a good thing for her to get at all. So, we're gonna take precautions to keep her well. Its such a exciting time and I still cant believe it. Now we just pray that nothing happens to ruin this for her. Once more to Doctor Graves, May God Bless YOU!! I hope you realize the impact you have had on our lives. And Bailey will tell you some day, I promise! Thank You. And we will keep everyone out there updated on what's going on.

Bailey had a little problem Friday night when we got home she had some retraction in her sleep so we went back to the hospital there Dr Little had a sleep test done on her to find out what may be happening and if her stats stayed up during sleep she past the test with flying colors! We do have her on a pulse ox monitor and that is better because we can see the numbers for ourselves not blinking lights. So that was a little scare for us It may be mom is just watching her like a hawk also (smile) now we start speech therapy and heal. I think the strangest thing is that she snores now and I'm so use to hearing that trach needing suctioning now we cant do that.

  • Update May 2000: 

Bailey is talking up a storm.  We've actually had to tell her to quiet down a few times.  But we love to hear her.  She is in speech therapy once a week now and we're thinking about putting her in a head start program for 3 year olds, so she can have interaction with kids her own age.  I'm still thinking about it :o)  Anyway we saw her ENT this week and she still has her stoma, its never closed since October 14th when she was decannulated, so her wonderful doctor says he will close it and revise her scar before she starts Kindergarten in a couple of years he wants to watch her the next couple of winters to see how she does, He stated that children with as a severe case of stenosis 98% usually have to have more then one surgery to correct the airway.  She is doing very well, We had a few scares with respiratory viruses this past winter, but now Summer is here and we can all enjoy being well.  Bailey gets to go swimming we just have to put a waterproof bandage over her hole in her neck and she is good to go.  Now her speech is just wonderful and of course she has a horse voice and she doesn't pronounce her letters perfect yet,  but she will and we are now trying to potty train.  

  • New Photos added March 2001:


Bailey, with big brother Tyler and big sister Whitney

 

Bailey in the Shower

  • Update July 2001

June 27th everything went as scheduled, Bailey went in to have her stoma closed we were so excited and happy for her, all she had talked about was getting her hole closed so she could go swimming in the "big pool" she even asked Dr. Graves herself if he would close her hole up.

They gave her VERSED to make her sleepy, (she was goofy) and off to the O.R. we got to wheel her up in a little wagon she had been playing in, she smiled as the O.R. nurse took her into the hall she waved at us as the doors shut with a big grin on her face, at that time I teared up, just seeing her so happy and ready to do this.

It took a little over an hour which seemed like forever and Dr. Graves came out and said she did fine and she was in recovery, he told us that he had put ear tubes in both ears and explained that he had to stitch up her windpipe and then revise the area and sew it up, he said she would be back to the room in 45 minutes to an hour so then we went to the gift shop to get Bailey something special.  When we got back to Bailey’s room she was already back from recovery and awake and not too happy, we had planned on staying 23 hour observation.

When I saw Bailey I knew something was wrong, "her cheeks are swollen." I said to my husband, he said "its probably just from the operation itself, she’ll be fine."  Dr. Graves walked by and I mentioned to him that her cheeks are swollen he came in and checked her and said "she should be fine" then let us know that he would check in later and he would be on call.  Well after he left I was trying to calm Bailey and she was so upset and seemed to be in pain, as she cried her face began swelling even more, It was very hard for me to stay calm I started crying and called the nurse.  When they came in I begged them "something is really wrong with her, she has never swelled like this before."  They noticed the swelling in her eyelids and went to call Dr. Graves calmly walking out of the room then making a run for the phone as she was out of my site (my husband was right behind her) while Bailey was starting to swell she was crying and in a panic holding on to me one second in fear then thrashing around struggling to breath, I started to pet her chest to comfort her and felt swelling there also I lifted her up and took her gown off and she was deformed on her right side and back all the way up her neck and face, I felt so helpless.

Dr. Graves came in and examined her, he knew exactly what it was, so he wanted to get an X-ray and he called the resident surgeon with Children’s Hospital.  Dr. Graves had to cut away Bailey’s stitches on her neck and open up the hole again.  Somtime between recovery and her room she blew out the stitch on her windpipe and since her neck itself was closed shut there was nowhere for the excess air to go except for under her skin and that’s what was happening, Bailey was inflating herself--I didn’t know it was humanly possible--so with her neck open again her lung was in danger and being collapsed under the pressure of the air so up to the PICU she went.  The resident surgeon explained to me what was happening and that he would need to do a chest tube to let off the pressure of the air on her lung, I was devastated to say the least.  I looked to Dr. Graves for his opinion on the situation and he told me it was what he would do if it were his child.  I totally trust him and I knew he wouldn’t do anything to hurt Bailey in her 3 years and 11 months he has always been there.  I know he felt terrible for what happened. 

So, off to the PICU we went I held her hand the whole way she had a grip on me, when I had to let her go I heard her call me and that hurt so bad, but I knew I could see her in a few minutes when ever they were done.  As upset as I was in the waiting room a total stranger came up to me and hugged me, I thought that was so sweet and in the coming days I never saw that lady again she was just there at that moment I needed a hug.

Bailey spent Wednesday Thursday and Friday in the PICU and we were sent to the floor Saturday and came home Sunday.  She had the chest tube for 2 days and it was amazing it seemed like when she would sleep and wake up more swelling would be gone, I took pictures the 2nd day I couldn’t bare it the first day, but each day after that she felt better, the first words she said to us was "I want to go home" and "I can't open my eyes" they were so swollen… They had her on Demerol every few hours then a Versed drip in her IV…  She did so good. Even potty trained in those few days she didn’t want to use her diapers, so once we got home she just sleeps in pull-ups.

Her neck is healing it just closed on its own, it doesn’t look very nice but we know that it can be fixed and her airway itself never has to be touched again. She has had a few bad dreams and has slept with me since we’ve been home (dad gets the couch). 

In such a simple operation Bailey threw everyone a curve ball, full of surprises, she is.  But thanks to a wonderful doctor and great nurses caring for her she did fine and came home in good health.  We Thank God for keeping her safe we met some really nice families in the PICU and keep everyone in our prayers always.  

 

Tyler, Whitney and Bailey 
Summer 2001

 

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